There is so much to blog about, including the big Fishing for Tucker tournament. Despite the rain, it was a huge success!! 96 boats entered the tournament, there were bands playing all afternoon, jambalaya and cokes being sold, the raffle tickets, a bake sale, face painting, and tons of people and donations!!
My cousin and uncle came in from Kentucky, and Tucker was so excited that “Jon Micah” was there with him, he went right to bossing him around, as if no time had passed since he last saw him. Molli loves him, too, but she calls him “Michael Jackson”….still haven’t figured that one out, haha. This year they added a Kids Fishing Derby, and lots of kids came out to fish in the Cabela’s pond. The kids loved it, and some of the fish they caught were huge.
You can friend “Fishing for Tucker” on facebook or go to fishingfortucker.com to learn more about the event. It is amazing that our family and the local community put this on to help us pay for Tucker’s medical and therapy expenses.
The tournament was Saturday, and then we left for Houston on Monday. If anyone is thinking: that was a horrible idea, well you are right! I don’t know why I didn’t foresee the scheduling as an issue. We schedule the appointments so far in advance that I just take whatever date they give me, then by the time I knew when the tournament was, it would have been very hard to move the appointments for two drs. Anyways….Mom, Tucker, and I were exhausted before we even began the trip.
So we left Monday afternoon, and of course as soon as we’re on the road Tucker was asking to see Morgan and Grace. We met them at Taco Bell for dinner in LC, they were so impressed to watch him eat applesauce by mouth! That was the first time that he ate for us that wasn’t at home or at school. He did great, even with the distractions all around him. He ended up eating very well for the whole trip-pudding and yogurt when we were away from the hotel room, and then sweet potatoes and beans when we were in the hotel room because we needed the microwave. He is doing great with the eating!
I scheduled the appointments very early in the day to reduce wait time (we usually wait on the drs at least 2 hours!), so we didn’t spend the night in LC. We said good-bye and headed on to Houston. I hadn’t made hotel reservations, as I knew there was a chance we’d give up and not be able to make the whole drive. So while I drove, mom was trying to make reservations on my IPhone, which was almost dead and therefore stuck to the very short charging cord. Well, my cup full of ice and water was open, and the phone fell into it! So there went my phone, luckily mom made the reservations first, we just weren’t sure how to find the hotel after that…… but anyways, we’d been there so many times that we found it very easily.
Tucker was of course thrilled to be at the hotel, so we got ready for bed and were asleep by 1130. The next morning we were up by 6 and we headed to see Dr. K at 745. The wait was very short (yay!) as we had an 830am appointment. We found out last week that Dr. K is expecting a baby, so we had to tell her congrats, of course. She looked so excited when she came in to see us, I thought she was excited because we told her congrats…..it turned out she had some pretty great news for us.
Now, at first this doesn’t sound good. We (as in Tucker’s parents, grandparents, caregivers, teachers, etc.) have known for a long time that Tucker’s sleep and his brain activity are not quite right. We have never actually seen him have a seizure, I don’t know anything about seizure meds or dealing with seizures…but we knew that proving that he had seizures would make sense. In 2008, Tucker’s lung dr in BR ordered a sleep study, and the sleep study showed abnormal brain activity. Because he is not a neurologist, he referred us to the BR neurologist, who ordered a 15 minute EEG, and then a 23 hour EEG. Both of these came back normal. Tucker continued to have abnormal sleep studies, but the neurologist said the EEG was normal, so that was the final word, not the sleep study.
Fast forward to 2011. Dr. K saw the sleep study results, and she ordered a 23 hour EEG in Houston. We went for this test in December, I posted about it a while ago. It takes 4 weeks to get results. So we timed it perfectly to go back to see Dr. K, although that was not on purpose.
Dr. K said that Tucker’s EEG was abnormal. He did not have any seizures for the 23 hours; however, he has epileptic activity, or spikes, or charges. The way she explained it to think of Tucker’s brain as a campfire that has been put out. You shouldn’t really have any sparks. For a regular person, every once in a while there will be a spark, and it shoots out and dies off. For Tucker, the sparks are often, and at night they are continuous. And with that, there is a risk that one or more of the sparks will fly off and start a forest fire. Luckily, as far as we know, that hasn’t happened. So then why did she seem so happy to be telling me this?? Because this type of brain activity is associated with language delay and autistic characteristics, and it has been treatable in other kids with a seizure med Lamictal. When the Lamictal works to control the brain waves, it also improves the language and behavior issues….wow!! This could be huge for Tucker.
So then I asked about his sleep-of course this brain activity makes him get poor sleep, correct? She explained that yes, it affects his sleep, so if the Lamictal works, he will get more productive sleep. This would literally change our lives. Tucker sleeps a lot…and on the weekends sometimes takes two naps. We have an almost 6 year old kid, but we schedule our lives like parents of a baby, never wanting to interrupt Tucker’s nap time or possible naps, or really even his bedtime because of the fear of him losing sleep. If we have an afternoon event scheduled, like a birthday party, I make sure Tucker sleeps late and takes a morning nap that day. Not exactly normal, but we are used to it. For Tucker to actually get 8-10 hours of sleep at night, and have that be all he needs?? I’m not sure Chris and I would know what to do with him, hahaha.
We will start the Lamictal next weekend at a small dose, then increase the does little by little for 8 weeks. Then he will repeat the 23 hour EEG to see if the meds are working. We will follow up with Dr K in June, since she is due in August. So that’s good for us, as August is a bad time for both Chris and me to take time off of work. As we were leaving, once again I showed my lack of scheduling abilities, by agreeing to an EEG date and return appointment that was right in the middle of the week when Matthew and Jon Michael are coming from Kentucky to visit. Oh yes, I’m sure Tucker would love to be in Houston while the boys are in Gonzales….. So mom pointed that out, and I went back and changed the appointments.
We got to visit with Missy (Samuel and Lauren’s mom) for a bit, as she now works in the clinic. I can’t say how great it is to see her, we enjoyed chatting with her for a bit, even though Tucker was bossing us “go to da hotel!” “get out!” the whole time. Tucker learned a huge skill on the Monday before the appointments, he learned to say NO, or “mo!” as he says it. And he is NOT afraid to use it! He told me no about 50 times a day on that trip, and I have only heard him tell Chris “mo!” once so far. After the appointment, we grabbed lunch at the hospital cafeteria, then we went to the hotel and took a 3 hour nap….seriously needed that!
That night we went to Olive Garden and Tucker licked all of the salad and breadsticks, and his own pepperoni pizza. He also demanded to see “Baby Kin” all through dinner, as if I had her hidden somewhere. I told him “we are in Texas, Kinley is in Louisiana”; he just stared at me.
We went back to the hotel, all had baths, and still went to bed early. The next morning we packed up and headed to see Dr. P at 815. We barely waited to see her, the early appointments are definitely a good idea. She came in with okay news. Tucker’s Feratin level is pretty low, this is a level that leads to Restless Leg Syndrome which Tucker has while asleep. She is going to discuss this with the sleep dr and hopefully treat it. So Tucker’s sleep should be improving soon. Tucker’s IgG levels are low, these are levels that show immunity. Last time they were checked (6 months before), his levels were normal, now they are on the lower end of normal. Dr. P said that as long as he isn’t sick often, she isn’t too worried about the numbers right now. Well, he isn’t sick that often, so we aren’t worried either. Dr. P had also checked Tucker’s blood 6 months earlier to see if his vaccines were effective. One of the vaccines that babies get, Prevnar, helps to fight against bacterial infections. Well Tucker had no immunity to that, because his vaccine did not work. So her suggestion was to give him the vaccine again, and then re-test his blood in 6 weeks to see if his body had the immune response for it. She asked us how Tucker has been doing in the last 6 months, and we said great. He had a few minor ear infections since his tubes fell out, but nothing big. I think he only missed one half-day of school so far due to illness, and that was a sinus infection. She asked us “anything else?” I said “well he is potty trained now.” Dr. P said that made her day! So mom mentioned that he eats by mouth. Dr. P and the social worker were obviously very impressed, so they had to hear all about ABA and how Tucker has changed over the past 6 months. Then the nurse came in and gave Tucker the vaccine, he was such a big kid about it. He was just happy about the band aid, he loves Band Aids! Santa Claus brought him some band aids in his stocking, they were all used up on fake “bo bos” by New Years.
We left the doctor’s office and headed home. We didn’t stop in LC as Aunt Kim was home sick and the girls were at school. We made pretty good time and got home before Chris came home from work. We did stop at Whole Foods on the way home, as Tucker was out of his Soy yogurt and pudding. I bought $50 worth…seriously…that way I don’t have to go back for a long time….and knowing that my son was going to eat every single bite made me not even care about the price. That evening was pretty low-key, as we were all very tired.
The next morning, I got up and got ready work. Chris started getting Tucker ready for school (Chris was off for two days), and he realized Tucker was very warm. Then Tucker really couldn’t put any weight on his leg that he got the shot in. His temperature was 101, and he never runs fever. Even when he has strep throat or an ear infection, his temperature doesn’t go up. So Tucker stayed home with Chris, and they both slept a lot. He still had ABA therapy with Amy in the afternoon, and he did great with that. On Friday morning, I got up and got ready for work, and Chris started getting Tucker’s medicine ready. I went in to wake Tucker up, and he yelled “light off! Blanket on!” I told him no, he had to go to school. He said “Mo! Stay home wit Daddy!” Well, excuse me! Luckily for him, that was an option, hahaha. We did take his temperature and make him try to walk a little, and he did not look good. Chris realized that we had been giving Tucker the Ibuprofen and Tylenol dosage for a 4 year old, and Tucker really needed an extra 2.5 ml to keep up with his weight. So once he figured that out, Tucker’s fever and pain were much better controlled. I did not realize that he had gotten big enough to increase the dose, good thing that Chris checks those kinds of things!
So I went to work again, leaving them home together. That day was a little better and more active, so by Saturday Tucker was bored.
By Sunday, Tucker had a cold and a scary sounding hacking cough. Chris went to the camp with his dad, and I pushed cold meds and pain meds all day. That afternoon Chris got home and took Tucker to the after hours doctor. They came home with meds for an ear infection and cough meds. I thought that maybe the ear infection and cough were related?? But unfortunately after 4 days of antibiotics, the cough is still very much there. It’s awful :( Tucker has coughing fits as long as he’s awake. He doesn’t have a fever or anything else, though, so he spent most of the week at school. He was especially excited on Tuesday when he got to bring his “vawentines” to school for his friends. On Thursday morning, the cough seemed to be much worse, and he asked to “stay home wit mama”. I called the pediatrician, and she suggested a different cough medicine. Because he had no other symptoms, she suggested I give him the new meds and watch him at home until Monday. So on Thursday Tucker watched about 8 straight hours of Mickey Mouse Clubhouse, and didn’t move around, but the only time he really had coughing relief was during his nap. We started the Delsym, along with Mucinex and the regular cold meds Thursday evening, and Tucker didn’t cough from 630pm up until 2am. Oh, and Chris lathered up Tucker’s chest with Vick’s vaporub about 5 times, and every time he woke up coughing, Chris woke up to put more on. At 2am I gave Tucker more night time cold meds, which put him back to sleep, so no more coughing until this morning.
I guess we’ll see how the weekend goes, I am hoping he has some relief soon. He is certainly a very good patient, no complaining or whining. If I was coughing like that, I would have had several meltdowns by now. Even with the hurt leg last week, he just hobbled around, no whining from him. He is such a sweet boy, thanks for checking in on us.
Showing posts with label Houston. Show all posts
Showing posts with label Houston. Show all posts
Friday, February 17, 2012
Thursday, January 12, 2012
EEG in Houston
Tucker had an EEG (test to see if he has seizures) scheduled for Dec 27-28. The test takes 23 hours, and he had to be hooked up to many leads for the test. His mito dr ordered it, so we went to Houston for the test.
On the day after Christmas, Mom, Gina, her best friend, Jene'e, and I left for LC. Our plan was to spend the evening and night with the Poche's, then leave for Houston early on the 27th. Well, we didn't get on the road until about 630pm ;) so from about 2pm until 930 when we got to their house, all we heard was "Go to Aunt Kim's! Go to Unca David's! Go see Mogan and Gace!!!" over and over.... :/ Then by the time we got there Tucker definitely needed to go to sleep, so I felt awful. We stopped for dinner on the way, and Tucker got his own kid-sized burger and fries. He still doesn't eat any of it, but his feelings get hurt if he doesn't have his own food. He took my ranch dressing and dipped his fries in it, then licked the ranch sauce off....yes, he is a Townsend! haha
We stopped once more to use the potty, even though Tucker just wanted to drive straight to LC. I told him I was going to be mad if he pee peed in his carseat!
Tucker had about 15 minutes with his cousins, then it was time for him to go to bed. Mom, Gina, and Jene'e stayed up with the girls watching Soul Surfer while we went to sleep....well, after about 30 minutes of Tucker trying to sneak out of the bed to go see Unca David! lol
The next morning we woke up, rushed out by 730, even though we needed to leave for 7. Our trip to Houston was quick and painless, as Tucker, Gina, and Jene'e slept most of the way. When the city skyline came into view, the girls were so excited! It is obvious that we live out in the country, they loved every building and park. They had to take pictures of themselves next to every neat looking window, door, etc. Having them along made us more excited to be there, as they found everything to be so interesting. The hospital really is in a nice part of town, right next to a big park, so I totally understand why they like it.
We checked in at admissions, then within 10 minutes we were up at the EMU (Epilepsy Monitoring Unit). The admissions clerk asked if we needed a guide, I told her we could handle it. (haha) So when we got up to the EMU, there wasn't anyone waiting for us. We found the room he was in, and we just sat around for a while. There was a twin bed for Tucker, an arm chair that folded out to a small bed, and a couch that folded out into a bed. So there was plenty of room for all of us, luckily. I went to find a nurse, and I also found a big playroom. The nurse came in to take Tucker's vitals and I went to the playroom to pick out a few trucks for Tucker. Gina also picked out Guess Who and Life for them to play.
The tech came in to put the leads on Tucker's head. There were about 40 sticky leads that needed to be attached to Tucker's head and face to monitor his brain wave activity. It took the tech more than 30 minutes to attach them all, and Tucker behaved perfectly while this was done.....I was in awe. Mom and I had to sing "night night, Teddy Bear" about 100 times, but that was expected! Tucker is extremely tender headed (he cries in the morning when I brush his hair, even with soft brush), and he likes to rub his hair when he is stressed out. Of course this was not an option as the leads were on his head, so I lay next to him and he rubbed my hair instead. After the leads were on, the tech wrapped Tucker's head with several gauze-like towels, then wrapped his chin as well. He looked like a Sock Monkey, Rapunzel (he had a long gauze ponytail), and a nun. So we of course made fun of him for the next 23 hours ;)
The leads were long enough that Tucker could go to the bathroom, and move between the couch, bed, and rocking chair. But he couldn't leave the room. The rest of us could leave, of course, and we took turn leaving when it was time to eat. Tucker caught on to this quickly, and he started going to the door saying "it's time to eat" trying to get his turn to leave! We checked in around 1030am, and by 1pm it was time for Tucker's nap. Mom took the teenagers to go stretch their legs and get lunch (they ended up at Smashburger-yum!), while I settled in to rock Tucker and eat my complimentary hospital lunch. I am so proud of mom! She drove around Houston without me, haha. It was only a few streets over, but still, she hadn't done that before. Jene'e doesn't usually eat hamburgers, but she loved Smashburger (so does everyone). Tucker took a good nap, after asking me about 2343098430 times "they comin' back?" "they go to Aunt Kim's?" Poor kid thought they had dropped us off and went back to LC!
They came back around 3, and we just spent a lazy afternoon together, reading and playing board games. Tucker loved being in the middle of Jene'e and Gina's games, taking all of the pieces from them! Around 5, I decided to take a break, so I took the girls out to get dinner and to unpack at the nearby hotel. That way when mom and the girls left the hospital at 9pm they wouldn't have to bring in all their luggage in the dark. So anyways, G and J loved the room, they were just sad that Tucker couldn't stay too (staying over at hotels is one of his favorite things). We went and picked up dinner, then headed back to the hospital. That hospital is truly a maze, and it was pretty scary in the dark. So I thought I had a good solution when I parked in the hospital parking garage instead of the physician's tower garage. We parked there, and we brought the food in to Tucker's room. He and Nana had a good time rocking while we were gone, and Tucker was so excited to have his own little pizza to lick while we ate pasta and breadsticks. The night nurse came in to check Tucker's vitals, and he was more than eager to help out. He held out his arm and held the thermometer for his temperature, then he held out his arm for the blood pressure monitor (he usually fights us on this), and he put the pulse ox monitor right on his toe, then stared at the screen, like he was going to interpret the numbers for the nurse. When she was done and ready to leave, he wouldn't let her! So she left the pulse ox with us for about 5 more minutes before she finally had to take it.
Mom, Gina, and Jene'e left at 9pm. Of course my great plan was not so great, so about 5 minutes later they called me because they were lost in the hospital. They ended up finding a doctor that told them how to get out, then they made it to the hotel and were ok. They didn't come back until 11am the next morning, which was fine, because Tucker pretty much slept from 9pm that night until 10am the next day. I packed everything up, and at 10am the tech came back to take all of the leads off. It was pretty painful. He had to use acetone to get the sticky stuff to come off, which Tucker did not like. Then even after the leads were off, most of the glue was still there, so I had to put him in the shower and scrub his head. Even after that, he looked like he had the worst case of dandruff ever! But I knew at that point I couldn't push it, so I just left him like that.
We had plans to meet another family, the Pohlas, at the Houston Children's Museum at 1 (a friend of mine Casey had sent me free passes, and the Houston museum is rated #1 in the US). So we packed all of our luggage and went to find some lunch. Tucker was so happy to be out of the hospital, even though he was just there for less than a day. He wanted pizza again, and the only pizza place we could find was a carry-out only place. So we ordered a large pizza and walked across the street to a small park. It was so nice to eat outdoors and enjoy the scenery after being inside for 24 hours. The weather really was perfect. We went to the museum for 1, and it looked like everyone else in Houston had the same ideas as us. We met up with Pohlas, and it was nice to see them and their 3 boys. It was very crowded in the museum, so we all lost touch with eachother a lot, but Tucker loved it. There was this huge climbing apparatus, but Tucker was too scared to go in there with the bigger kids. We found an area that was set up like a kids' town, it had a grocery store, restaurant, news studio, and also a police department. Tucker spent the rest of his time going from the police car to the ambulance. He loved it, and even Christmas bear got to drive the ambulance. G and J went around the whole museum and I hope learned a lot from the different exhibits. Jene'e actually told me at one point "Leigh, you are the coolest mom ever" since I took the time to bring them to the museum. That made me so happy, because most of the time I don't feel very cool! hahaha
After about an hour of being in the crowded museum, Tucker had enough and I was sensing a huge meltdown coming. So we said our good-byes and got in the car, headed back to LC for a longer stay. We met Aunt Kim and the girls at their local McD's which was just remodeled to put in a huge playplace. Tucker loved it. He was very unsure of the steps at first, so Grace and Morgan went up with him once, and that was all that it took. He was going up and down, over and over, even when the bigger kids went up the steps and couldn't find their way back out.
When we got their house, we stayed up for a while before going to bed. Tucker got to see Uncle David for a little while before bed, so he was happy. I got to talk to Morgan for a while, the girls are getting too old! The next morning we slept in and took our time getting ready to leave. Well, everyone except Tucker, of course. He woke up early and went to all of the girls saying "get up! get up! play wit me!" This started a fight between him and G:
Tucker: "get up!"
Gina: "no, you get out!"
Tucker: "no, you get up!"
and this went on.....hahaha
Of course, as soon as everyone gave in and woke up, Tucker was ready for a "map". He slept for about an hour while we all waited for him to wake up so we could finally play.
At some point I decided that Tucker's dandruff look was really too much. So I sat him down in the bathroom to brush the glue out of his hair. I knew it would be painful, but that stuff had to come out! Grace came in, gave Tucker his bear, and held his hand while I brushed his hair. It was so incrediblly sweet, and Tucker sat through the whole thing. With Tucker looking much better, the kids played outside for about an hour before we left at lunchtime. We were sad to leave them, as always, but we will see them soon.
We should get the results from the EEG in the next few weeks. Tucker's last EEG was run over 3 years ago, and that one came back normal. Tucker sometimes has staring spells, and the dr. wants to make sure he is ok.
When I got home and told Chris all about the trip, he said "Wow, that sounds like pure hell." Hahahaha, and I thought it was the most fun I'd had in a while! I guess I don't get out much ;) No housework, cooking, running errands, or going to work for a few days? Sounds great, right?
Having the teenagers and mom along with us for this trip made it really feel like more of a vacation than a medical trip, even though poor Tucker didn't to "go to da hotayal!" Maybe next time!
On the day after Christmas, Mom, Gina, her best friend, Jene'e, and I left for LC. Our plan was to spend the evening and night with the Poche's, then leave for Houston early on the 27th. Well, we didn't get on the road until about 630pm ;) so from about 2pm until 930 when we got to their house, all we heard was "Go to Aunt Kim's! Go to Unca David's! Go see Mogan and Gace!!!" over and over.... :/ Then by the time we got there Tucker definitely needed to go to sleep, so I felt awful. We stopped for dinner on the way, and Tucker got his own kid-sized burger and fries. He still doesn't eat any of it, but his feelings get hurt if he doesn't have his own food. He took my ranch dressing and dipped his fries in it, then licked the ranch sauce off....yes, he is a Townsend! haha
We stopped once more to use the potty, even though Tucker just wanted to drive straight to LC. I told him I was going to be mad if he pee peed in his carseat!
Tucker had about 15 minutes with his cousins, then it was time for him to go to bed. Mom, Gina, and Jene'e stayed up with the girls watching Soul Surfer while we went to sleep....well, after about 30 minutes of Tucker trying to sneak out of the bed to go see Unca David! lol
The next morning we woke up, rushed out by 730, even though we needed to leave for 7. Our trip to Houston was quick and painless, as Tucker, Gina, and Jene'e slept most of the way. When the city skyline came into view, the girls were so excited! It is obvious that we live out in the country, they loved every building and park. They had to take pictures of themselves next to every neat looking window, door, etc. Having them along made us more excited to be there, as they found everything to be so interesting. The hospital really is in a nice part of town, right next to a big park, so I totally understand why they like it.
We checked in at admissions, then within 10 minutes we were up at the EMU (Epilepsy Monitoring Unit). The admissions clerk asked if we needed a guide, I told her we could handle it. (haha) So when we got up to the EMU, there wasn't anyone waiting for us. We found the room he was in, and we just sat around for a while. There was a twin bed for Tucker, an arm chair that folded out to a small bed, and a couch that folded out into a bed. So there was plenty of room for all of us, luckily. I went to find a nurse, and I also found a big playroom. The nurse came in to take Tucker's vitals and I went to the playroom to pick out a few trucks for Tucker. Gina also picked out Guess Who and Life for them to play.
The tech came in to put the leads on Tucker's head. There were about 40 sticky leads that needed to be attached to Tucker's head and face to monitor his brain wave activity. It took the tech more than 30 minutes to attach them all, and Tucker behaved perfectly while this was done.....I was in awe. Mom and I had to sing "night night, Teddy Bear" about 100 times, but that was expected! Tucker is extremely tender headed (he cries in the morning when I brush his hair, even with soft brush), and he likes to rub his hair when he is stressed out. Of course this was not an option as the leads were on his head, so I lay next to him and he rubbed my hair instead. After the leads were on, the tech wrapped Tucker's head with several gauze-like towels, then wrapped his chin as well. He looked like a Sock Monkey, Rapunzel (he had a long gauze ponytail), and a nun. So we of course made fun of him for the next 23 hours ;)
The leads were long enough that Tucker could go to the bathroom, and move between the couch, bed, and rocking chair. But he couldn't leave the room. The rest of us could leave, of course, and we took turn leaving when it was time to eat. Tucker caught on to this quickly, and he started going to the door saying "it's time to eat" trying to get his turn to leave! We checked in around 1030am, and by 1pm it was time for Tucker's nap. Mom took the teenagers to go stretch their legs and get lunch (they ended up at Smashburger-yum!), while I settled in to rock Tucker and eat my complimentary hospital lunch. I am so proud of mom! She drove around Houston without me, haha. It was only a few streets over, but still, she hadn't done that before. Jene'e doesn't usually eat hamburgers, but she loved Smashburger (so does everyone). Tucker took a good nap, after asking me about 2343098430 times "they comin' back?" "they go to Aunt Kim's?" Poor kid thought they had dropped us off and went back to LC!
They came back around 3, and we just spent a lazy afternoon together, reading and playing board games. Tucker loved being in the middle of Jene'e and Gina's games, taking all of the pieces from them! Around 5, I decided to take a break, so I took the girls out to get dinner and to unpack at the nearby hotel. That way when mom and the girls left the hospital at 9pm they wouldn't have to bring in all their luggage in the dark. So anyways, G and J loved the room, they were just sad that Tucker couldn't stay too (staying over at hotels is one of his favorite things). We went and picked up dinner, then headed back to the hospital. That hospital is truly a maze, and it was pretty scary in the dark. So I thought I had a good solution when I parked in the hospital parking garage instead of the physician's tower garage. We parked there, and we brought the food in to Tucker's room. He and Nana had a good time rocking while we were gone, and Tucker was so excited to have his own little pizza to lick while we ate pasta and breadsticks. The night nurse came in to check Tucker's vitals, and he was more than eager to help out. He held out his arm and held the thermometer for his temperature, then he held out his arm for the blood pressure monitor (he usually fights us on this), and he put the pulse ox monitor right on his toe, then stared at the screen, like he was going to interpret the numbers for the nurse. When she was done and ready to leave, he wouldn't let her! So she left the pulse ox with us for about 5 more minutes before she finally had to take it.
Mom, Gina, and Jene'e left at 9pm. Of course my great plan was not so great, so about 5 minutes later they called me because they were lost in the hospital. They ended up finding a doctor that told them how to get out, then they made it to the hotel and were ok. They didn't come back until 11am the next morning, which was fine, because Tucker pretty much slept from 9pm that night until 10am the next day. I packed everything up, and at 10am the tech came back to take all of the leads off. It was pretty painful. He had to use acetone to get the sticky stuff to come off, which Tucker did not like. Then even after the leads were off, most of the glue was still there, so I had to put him in the shower and scrub his head. Even after that, he looked like he had the worst case of dandruff ever! But I knew at that point I couldn't push it, so I just left him like that.
We had plans to meet another family, the Pohlas, at the Houston Children's Museum at 1 (a friend of mine Casey had sent me free passes, and the Houston museum is rated #1 in the US). So we packed all of our luggage and went to find some lunch. Tucker was so happy to be out of the hospital, even though he was just there for less than a day. He wanted pizza again, and the only pizza place we could find was a carry-out only place. So we ordered a large pizza and walked across the street to a small park. It was so nice to eat outdoors and enjoy the scenery after being inside for 24 hours. The weather really was perfect. We went to the museum for 1, and it looked like everyone else in Houston had the same ideas as us. We met up with Pohlas, and it was nice to see them and their 3 boys. It was very crowded in the museum, so we all lost touch with eachother a lot, but Tucker loved it. There was this huge climbing apparatus, but Tucker was too scared to go in there with the bigger kids. We found an area that was set up like a kids' town, it had a grocery store, restaurant, news studio, and also a police department. Tucker spent the rest of his time going from the police car to the ambulance. He loved it, and even Christmas bear got to drive the ambulance. G and J went around the whole museum and I hope learned a lot from the different exhibits. Jene'e actually told me at one point "Leigh, you are the coolest mom ever" since I took the time to bring them to the museum. That made me so happy, because most of the time I don't feel very cool! hahaha
After about an hour of being in the crowded museum, Tucker had enough and I was sensing a huge meltdown coming. So we said our good-byes and got in the car, headed back to LC for a longer stay. We met Aunt Kim and the girls at their local McD's which was just remodeled to put in a huge playplace. Tucker loved it. He was very unsure of the steps at first, so Grace and Morgan went up with him once, and that was all that it took. He was going up and down, over and over, even when the bigger kids went up the steps and couldn't find their way back out.
When we got their house, we stayed up for a while before going to bed. Tucker got to see Uncle David for a little while before bed, so he was happy. I got to talk to Morgan for a while, the girls are getting too old! The next morning we slept in and took our time getting ready to leave. Well, everyone except Tucker, of course. He woke up early and went to all of the girls saying "get up! get up! play wit me!" This started a fight between him and G:
Tucker: "get up!"
Gina: "no, you get out!"
Tucker: "no, you get up!"
and this went on.....hahaha
Of course, as soon as everyone gave in and woke up, Tucker was ready for a "map". He slept for about an hour while we all waited for him to wake up so we could finally play.
At some point I decided that Tucker's dandruff look was really too much. So I sat him down in the bathroom to brush the glue out of his hair. I knew it would be painful, but that stuff had to come out! Grace came in, gave Tucker his bear, and held his hand while I brushed his hair. It was so incrediblly sweet, and Tucker sat through the whole thing. With Tucker looking much better, the kids played outside for about an hour before we left at lunchtime. We were sad to leave them, as always, but we will see them soon.
We should get the results from the EEG in the next few weeks. Tucker's last EEG was run over 3 years ago, and that one came back normal. Tucker sometimes has staring spells, and the dr. wants to make sure he is ok.
When I got home and told Chris all about the trip, he said "Wow, that sounds like pure hell." Hahahaha, and I thought it was the most fun I'd had in a while! I guess I don't get out much ;) No housework, cooking, running errands, or going to work for a few days? Sounds great, right?
Having the teenagers and mom along with us for this trip made it really feel like more of a vacation than a medical trip, even though poor Tucker didn't to "go to da hotayal!" Maybe next time!
Thursday, September 15, 2011
So Many Doctors....
Tucker has been seeing all of his doctors lately. About every 6 months or so, we have check-ups scheduled with each of them.
Having them all scheduled together is good because we have months of "free" time, but when the appointments are due, it makes us all so busy. So far Tucker has had at least one appointment per week since the first week of August, and he has one a week scheduled until late October. Then, hopefully, we have another few months off.
I have a calendar at work for appointments, and the other day I realized there are way more Tucker appointments on there than any work appointments. We added the two OT evaluations this month, and then Tucker's g-button kept leaking, so he had two surprise appointments with the surgeon; they ordered a new size for him, and his button is much better. Tucker had follow-ups with his mito dr, new pulm/immunology dr, surgeon, geneticist, and now an appointment with a new pulmonologist/sleep doctor in Houston. This week is the eye dr, then pulmonology in BR (hopefully he will discharge us as Tucker is now followed in Houston), and then the next week Chris and Tucker are back in Houston for a 24 inpatient EEG. Add to this the daily ABA therapy, and the every other week OT visit. He is a busy busy guy!
I also need to schedule a follow up with the GI, and then I think we're done! Hopefully we keep him healthy this winter, all three of us are due to get our flu shots soon.
Good news-the geneticist thought Tucker looked fantastic. He attended the UMDF mito conference in Chicago in June, and he learned a lot more about mitochondrial medicine. He is actually giving a lecture in a few weeks in New Orleans, we are all attending. I think he called us out of the blue to tell us about the new genetic testing available from Transgenomics. Well Dr K had already told us about it, and Tucker has bloodwork done for it already. He also checked the levels of vitamins in Tucker's blood to see if all of the supplements are being absorbed into his body. He said he does not want to overstep or duplicate anything Dr K does, but he wants to help us in the in-between times since he is so much closer, and we only see Dr K every 6 months. He made several good suggestions, such as for Tucker's nap time and energy conservation.
Tucker was very good for the two times he had labs drawn in Houston. Well, he was terrible in New Orleans! I don't know if it's because it was the end of the day, if he was tired, or if Chris was there and he was just being dramatic. He fought all four of us (Chris, me, two lab techs) to hold him down, then once he was stuck, he was fine! He just didn't want to sit still. He is hilarious.
So after this, we went to the nearby mall and let Tucker pick a prize at the Disney Store (it's the closest one because all of the ones in BR closed down). He was SO excited to look around, he ended up choosing a small Tow Mater truck, and a small Winnie the Pooh Bear. So as with all bears, he needed a name to distinguish him; this one is "Pooh Bear," of course. So he is added to "teddy bear", "black bear", "big bear", "little bear", and of course, just plain "bear."
We saw the geneticist that Thursday evening, then we relaxed that Friday night, then of course the potty training weekend was next. On the next Friday morning, we packed up the car and left for Houston at 5am. We drove straight to the doctor's office, but we stopped every hour so that Tucker could use the potty. And he did!! He did such a great job using only the potty, he never asked us to stop, but we scheduled potty breaks so I guess that worked. I think the ride was way too much on him, though, because he was in an awful mood at the dr's office...I mean, like made us want to leave him in Houston kind of a mood! He cried the whole time we were in the waiting room, nothing made him happy. Then he threw a fit when the nurse tech came with the pulse ox sticky reader (don't you love my terminology?). I told him to sit down and let the nurse read his sats, so then he cried real tears! The tech gave him two stickers, then he smiled so big. So we know he was just being overly dramatic, he is such a mess. She took his temperature, which was fine, and we didn't even attempt the blood pressure cuff; he totally freaked when he saw that.
The doctor came in soon after, and Tucker loved her. He was like a different child, playing with her hair and acting like he was reading his chart. The dr. is not really too concerned about Tucker's sleep; she said that the dr. in Baton Rouge is concerned by the last sleep study (from Aug 2010) because of two indicators-Tucker is not getting enough REM sleep, which is the type of sleep that helps the brain to rest. He also has a lot of limb movement; it is small and you can't usually see it, but he moves so often that he wakes himself up all night. The central apnea and obstructive apneas were in normal range, so she is not in a hurry to do another sleep study. We already had one scheduled for that night, but Tucker has a cold. Right when the weather got nice and cool, of course he got a cold. I didn't think it was a bad cold, and it's not, really. But the dr. said that any type of stuffiness can make the test come back abnormal, which means we'd have to repeat it to make sure it wasn't the cold that caused the odd results. So we said NO thank you! to the double sleep study. If you have never seen a picture of Tucker at a sleep study, ask me to show you one time. He is hooked up to what looks like spaghetti wires, they are hooked to his head, face, neck, chest, tummy, and legs, he has a cannula in his nose, a sensor in his mouth.....I don't know how anyone sleeps like that. So we would rather wait until he is 100% cold-free to give him that test.
When the appointment was over, we still had a very cranky 5 year old on our hands. We were also exhausted from the drive, so we decided to stay in Texas and maybe enjoy ourselves instead of rushing home. We drove the 20 miles south to Kemah, TX, got a hotel room, and took a rest. Tucker did not actually fall asleep, he was too excited to be in a "hot-ayal", but after an hour of resting he was in a much better mood. We drove to the nearby Kemah boardwalk. I have wanted to bring Tucker here for a long time, I thought he'd love it. There were several kiddie rides, and some that were a little wilder. There was barely anyone there, so Tucker and Chris didn't have to wait in any lines. They rode the double decker carousel twice, the train, the aviator, which is a spinning ride, and the bouncer, which is one of those crazy up and down up and down rides. Of course Tucker loved all of it.
Then Chris needed a break! So Tucker rode two kiddie rides on his own. We put him in his stroller and took him to walk around the bay area, and to look for some place to eat. We passed a candy/toy store, and the windows were lined with bears. Tucker pointed and said "bear, bear, bear!" so we went in. I told him he could pick a small bear, well the walls were lined with bears of all shapes and sizes. There was even a bear that cost $500! After about 15 minutes, Tucker chose a small white bear, which is now named "white bear." He held onto that bear for the rest of the night, he was so happy :)
We went to sleep early that night, Tucker was fascinated by the telephone with a cord in the hotel room. Chris posted a picture of Tucker ordering room service on facebook (just kidding! we unplugged the phone so he could play with it). The next morning Tucker woke us up around 7am, but then after we were completely awake, he fell back asleep for two more hours. Typical Tucker, we wouldn't expect anything different. So Chris and I ordered room service breakfast, and ate way too much yummy food :) We waited until about 10am to wake Tucker up, then we packed up and headed home. We had a pretty boring rest of the weekend, just cleaning up around the house and visiting family.
Tucker is still doing great with ABA, hopefully once the doctor visits are over he can get into more of a routine. Thanks for checking in on us.
Also, happy birthday to Tucker's Daddy, Chris :)
Having them all scheduled together is good because we have months of "free" time, but when the appointments are due, it makes us all so busy. So far Tucker has had at least one appointment per week since the first week of August, and he has one a week scheduled until late October. Then, hopefully, we have another few months off.
I have a calendar at work for appointments, and the other day I realized there are way more Tucker appointments on there than any work appointments. We added the two OT evaluations this month, and then Tucker's g-button kept leaking, so he had two surprise appointments with the surgeon; they ordered a new size for him, and his button is much better. Tucker had follow-ups with his mito dr, new pulm/immunology dr, surgeon, geneticist, and now an appointment with a new pulmonologist/sleep doctor in Houston. This week is the eye dr, then pulmonology in BR (hopefully he will discharge us as Tucker is now followed in Houston), and then the next week Chris and Tucker are back in Houston for a 24 inpatient EEG. Add to this the daily ABA therapy, and the every other week OT visit. He is a busy busy guy!
I also need to schedule a follow up with the GI, and then I think we're done! Hopefully we keep him healthy this winter, all three of us are due to get our flu shots soon.
Good news-the geneticist thought Tucker looked fantastic. He attended the UMDF mito conference in Chicago in June, and he learned a lot more about mitochondrial medicine. He is actually giving a lecture in a few weeks in New Orleans, we are all attending. I think he called us out of the blue to tell us about the new genetic testing available from Transgenomics. Well Dr K had already told us about it, and Tucker has bloodwork done for it already. He also checked the levels of vitamins in Tucker's blood to see if all of the supplements are being absorbed into his body. He said he does not want to overstep or duplicate anything Dr K does, but he wants to help us in the in-between times since he is so much closer, and we only see Dr K every 6 months. He made several good suggestions, such as for Tucker's nap time and energy conservation.
Tucker was very good for the two times he had labs drawn in Houston. Well, he was terrible in New Orleans! I don't know if it's because it was the end of the day, if he was tired, or if Chris was there and he was just being dramatic. He fought all four of us (Chris, me, two lab techs) to hold him down, then once he was stuck, he was fine! He just didn't want to sit still. He is hilarious.
So after this, we went to the nearby mall and let Tucker pick a prize at the Disney Store (it's the closest one because all of the ones in BR closed down). He was SO excited to look around, he ended up choosing a small Tow Mater truck, and a small Winnie the Pooh Bear. So as with all bears, he needed a name to distinguish him; this one is "Pooh Bear," of course. So he is added to "teddy bear", "black bear", "big bear", "little bear", and of course, just plain "bear."
We saw the geneticist that Thursday evening, then we relaxed that Friday night, then of course the potty training weekend was next. On the next Friday morning, we packed up the car and left for Houston at 5am. We drove straight to the doctor's office, but we stopped every hour so that Tucker could use the potty. And he did!! He did such a great job using only the potty, he never asked us to stop, but we scheduled potty breaks so I guess that worked. I think the ride was way too much on him, though, because he was in an awful mood at the dr's office...I mean, like made us want to leave him in Houston kind of a mood! He cried the whole time we were in the waiting room, nothing made him happy. Then he threw a fit when the nurse tech came with the pulse ox sticky reader (don't you love my terminology?). I told him to sit down and let the nurse read his sats, so then he cried real tears! The tech gave him two stickers, then he smiled so big. So we know he was just being overly dramatic, he is such a mess. She took his temperature, which was fine, and we didn't even attempt the blood pressure cuff; he totally freaked when he saw that.
The doctor came in soon after, and Tucker loved her. He was like a different child, playing with her hair and acting like he was reading his chart. The dr. is not really too concerned about Tucker's sleep; she said that the dr. in Baton Rouge is concerned by the last sleep study (from Aug 2010) because of two indicators-Tucker is not getting enough REM sleep, which is the type of sleep that helps the brain to rest. He also has a lot of limb movement; it is small and you can't usually see it, but he moves so often that he wakes himself up all night. The central apnea and obstructive apneas were in normal range, so she is not in a hurry to do another sleep study. We already had one scheduled for that night, but Tucker has a cold. Right when the weather got nice and cool, of course he got a cold. I didn't think it was a bad cold, and it's not, really. But the dr. said that any type of stuffiness can make the test come back abnormal, which means we'd have to repeat it to make sure it wasn't the cold that caused the odd results. So we said NO thank you! to the double sleep study. If you have never seen a picture of Tucker at a sleep study, ask me to show you one time. He is hooked up to what looks like spaghetti wires, they are hooked to his head, face, neck, chest, tummy, and legs, he has a cannula in his nose, a sensor in his mouth.....I don't know how anyone sleeps like that. So we would rather wait until he is 100% cold-free to give him that test.
When the appointment was over, we still had a very cranky 5 year old on our hands. We were also exhausted from the drive, so we decided to stay in Texas and maybe enjoy ourselves instead of rushing home. We drove the 20 miles south to Kemah, TX, got a hotel room, and took a rest. Tucker did not actually fall asleep, he was too excited to be in a "hot-ayal", but after an hour of resting he was in a much better mood. We drove to the nearby Kemah boardwalk. I have wanted to bring Tucker here for a long time, I thought he'd love it. There were several kiddie rides, and some that were a little wilder. There was barely anyone there, so Tucker and Chris didn't have to wait in any lines. They rode the double decker carousel twice, the train, the aviator, which is a spinning ride, and the bouncer, which is one of those crazy up and down up and down rides. Of course Tucker loved all of it.
Then Chris needed a break! So Tucker rode two kiddie rides on his own. We put him in his stroller and took him to walk around the bay area, and to look for some place to eat. We passed a candy/toy store, and the windows were lined with bears. Tucker pointed and said "bear, bear, bear!" so we went in. I told him he could pick a small bear, well the walls were lined with bears of all shapes and sizes. There was even a bear that cost $500! After about 15 minutes, Tucker chose a small white bear, which is now named "white bear." He held onto that bear for the rest of the night, he was so happy :)
We went to sleep early that night, Tucker was fascinated by the telephone with a cord in the hotel room. Chris posted a picture of Tucker ordering room service on facebook (just kidding! we unplugged the phone so he could play with it). The next morning Tucker woke us up around 7am, but then after we were completely awake, he fell back asleep for two more hours. Typical Tucker, we wouldn't expect anything different. So Chris and I ordered room service breakfast, and ate way too much yummy food :) We waited until about 10am to wake Tucker up, then we packed up and headed home. We had a pretty boring rest of the weekend, just cleaning up around the house and visiting family.
Tucker is still doing great with ABA, hopefully once the doctor visits are over he can get into more of a routine. Thanks for checking in on us.
Also, happy birthday to Tucker's Daddy, Chris :)
Friday, August 19, 2011
Day Two of the Trip
On the second day of the Houston trip, we got up pretty early. We got dressed and packed up, then we went downstairs for the free hotel breakfast. It was pretty good, the best part is they had boiled eggs. Tucker got an egg in a bowl, and he was so excited!
Once we ate and loaded up the car, we headed over to the doctor's office. It was about a 5 minute drive, and we were quickly in the office. We signed in and then settled in for the wait, it ended up being over 2 hours!! Every ten minutes or so I would go to the desk and ask for an update, they were just running very behind. Tucker was SOOO good, poor kid. He listened to Jason Aldean on the IPhone, watched Kipper on his little DVD player, and looked for bears in all of the magazines in the waiting room. We took him for a few little walks around the office, but he mainly just sat and was very still.
Then we went in and they didn't need to get his vitals since Dr. K had just seen him the day before. Dr. P came in pretty quickly and apologized for the long wait. She asked us to tell her all about Tucker's lungs, from the beginning. Well, that is a long story! When I told her that he was born at 27 weeks and spent 8 1/2 months in the NICU because he couldn't get off of the ventilator, she asked, "wow, and you all are still functioning?" Well.....that is up for interpretation! It is always an odd experience to have to meet a new doctor, and even though they have the chart, they like to ask the parents to tell the kid's story. It brings back bad memories and reminds us of how far Tucker has come, so it is very emotional.
The dr. is double certified, meaning she is a lung doctor and an immunology doctor. So she ordered labwork for Tucker to get all of his blood levels and immune levels to be checked, to check to see if his vaccines worked to make him immune to those illnesses he was vaccinated for, and to run a lab panel to see what he is allergic to (he is on 2 allergy meds each day, plus over the counter cold meds almost every day). She also ordered a chest X Ray because she said his lungs sounded coarse. I told her that Tucker's doctors at home say his lungs sound great, she said they probably sound great compared to where they used to be, but they were still coarse. So she wanted a baseline Chest XRay while he is healthy, so that she will have a baseline to compare it to if he comes back in with some type of lung problem. I thought she was going to give us some answers on Tucker's sleep issues, but she is not a sleep specialist. So she referred us to her colleague, and we will be seeing her in September.
By the time we were done with the appointment, it was noon. We went to the lab (right next door, not across the street! haha), and they were just closing for lunch. So we had an hour to wait, so we went downstairs to eat lunch. Again, Tucker was so good. At this point, I was tired, frustrated, and I think coming out of the nice little denial I have been in for the past few months....the summer has been very busy at work, and very busy for Tucker, and he is just doing great with his therapy and health. He sees about 10 specialists, but he hasn't had any appointments this summer except for his regular 5 year old checkup until these 2 days. So I had kind of let my guard down and let him be a "normal" kid, well normal with autism, I guess.
So to be back at the doctor's office, and to know we had to come back soon for another appointment with a new doctor, and also come in soon for a 24 hour EEG to check for seizures....it kind of just knocked me out of my comfortable denial place that I had been in all summer.
So Tucker ate his chips, then we went over to the imaging center to get his chest X Ray. Once again, he did a fantastic job, he stood very still so that the XRay tech got a good picture of his chest. Then we went to the lab to get blood drawn. This lab is a lot smaller since it's only for the pediatric clinic. There were two older boys sitting outside the lab, I guess around 7 or 8 years old. They each had to get blood drawn, well the first brother was fine and it only took a minute. The second brother was crying before he even went, and then he was pretty hysterical when the lab tech pulled out the needle. The mom was talking to him like he had gotten labs drawn many times, and he knew that it would be over very quickly if he just stopped yelling. I told mom "get Tucker out of here!" lol, because if that big kid was screaming and in hysterics, Tucker was going to think the lab tech was beating him up or something! Mom took Tucker for a walk down the hall until the boy was done. Then it was Tucker's turn, and we went in. He did really well, I put his Teddy Bear song on the IPhone, and he sat very still while the tech drew a few vials of blood. After this, we left the office, and drove away into Houston traffic.
We were ready to go home, by then it was about 3pm. Tucker fell asleep pretty quickly, and about an hour later he woke up "Morgan! Grace!" We hadn't planned on stopping in Lake Charles because we were tired and ready to go home, but we had to stop to eat anyways, so we changed our minds :) Aunt Kim and the girls met us at Logan's, and Tucker was so happy to see them. He licked all of the peanuts and the girls fought over who got to sit next to him. Then Grace had to go to the bathroom, so of course Tucker and I followed. Tucker pee peed on the potty, well mainly the floor, but some of it made it in! He was so proud of himself again, so we made a very big deal out of it.
So now it has been two weeks since the Houston visits. Dr. K called to let us know that Tucker had glucose in his urine, meaning that his blood sugars are too high, so it is spilling over. I was pretty adamant with the nurse that her results had to be wrong, as Tucker's blood sugar readings at home have been low. She told me that the test was right, and I needed to follow up with the endocrinologist. So that night Chris bought a new battery for the glucose test meter we have, and the reading was 253....so wow, maybe we have been taking the blood checks at the wrong times, or maybe we have been using a near-dead meter. I don't know. So we have gone back to monitoring his blood sugar a lot more often, and luckily we haven't had a reading over 200 again, and nothing near the readings in the 400s that we had last October when we learned about this problem.
I have gotten in touch with the sleep specialist, and we are scheduled to go to Houston to see her, and maybe stay overnight for a sleep study. It is a Friday so I took off of work and Chris and I will go together. Then in October, Tucker will have his 24 hour EEG. I did not take off of work, and Chris will be going to Houston with Tucker for 2 days for that. So we will have been to Houston in August, September, and October of this year. Hopefully after that we don't go back until February for follow up appointments, we are hoping that everything looks good on the tests.
I haven't heard anything back about any of the other lab work, so I think everything must be fine :)
Tucker's button has also been leaking a lot lately, which in the old days used to mean that he was sick. Well it hasn't leaked like this in years, and we keep changing the buttons out (we usually change them about every 3 months, it's not hard at all to do). So the other day Jackie was watching him and she changed his button out because his food was pouring out all over the place! So I called the surgeon, whom we hadn't seen in over 2 years (!! wow, that is embarassing), and they said of course his button is leaking, he is wearing the same size as he has for 3 years. Chris took him in to the see the surgeon last week and they ordered a new longer button. We just changed insurance over to my work insurance so we get to move back to our former DME company (yay!) to supply all of Tucker's food, so I got the orders faxed over to them. We got a new button on Saturday, and Chris and I switched it out on Sunday. He is still leaking a lot, but by next week he should be doing much better.
I hope to update soon about the AMAZING progress Tucker is making with speech and behavior, and the new feeding protocol we will be working on, I promise you, Tucker is the hardest working 5 year old around! :)
Once we ate and loaded up the car, we headed over to the doctor's office. It was about a 5 minute drive, and we were quickly in the office. We signed in and then settled in for the wait, it ended up being over 2 hours!! Every ten minutes or so I would go to the desk and ask for an update, they were just running very behind. Tucker was SOOO good, poor kid. He listened to Jason Aldean on the IPhone, watched Kipper on his little DVD player, and looked for bears in all of the magazines in the waiting room. We took him for a few little walks around the office, but he mainly just sat and was very still.
Then we went in and they didn't need to get his vitals since Dr. K had just seen him the day before. Dr. P came in pretty quickly and apologized for the long wait. She asked us to tell her all about Tucker's lungs, from the beginning. Well, that is a long story! When I told her that he was born at 27 weeks and spent 8 1/2 months in the NICU because he couldn't get off of the ventilator, she asked, "wow, and you all are still functioning?" Well.....that is up for interpretation! It is always an odd experience to have to meet a new doctor, and even though they have the chart, they like to ask the parents to tell the kid's story. It brings back bad memories and reminds us of how far Tucker has come, so it is very emotional.
The dr. is double certified, meaning she is a lung doctor and an immunology doctor. So she ordered labwork for Tucker to get all of his blood levels and immune levels to be checked, to check to see if his vaccines worked to make him immune to those illnesses he was vaccinated for, and to run a lab panel to see what he is allergic to (he is on 2 allergy meds each day, plus over the counter cold meds almost every day). She also ordered a chest X Ray because she said his lungs sounded coarse. I told her that Tucker's doctors at home say his lungs sound great, she said they probably sound great compared to where they used to be, but they were still coarse. So she wanted a baseline Chest XRay while he is healthy, so that she will have a baseline to compare it to if he comes back in with some type of lung problem. I thought she was going to give us some answers on Tucker's sleep issues, but she is not a sleep specialist. So she referred us to her colleague, and we will be seeing her in September.
By the time we were done with the appointment, it was noon. We went to the lab (right next door, not across the street! haha), and they were just closing for lunch. So we had an hour to wait, so we went downstairs to eat lunch. Again, Tucker was so good. At this point, I was tired, frustrated, and I think coming out of the nice little denial I have been in for the past few months....the summer has been very busy at work, and very busy for Tucker, and he is just doing great with his therapy and health. He sees about 10 specialists, but he hasn't had any appointments this summer except for his regular 5 year old checkup until these 2 days. So I had kind of let my guard down and let him be a "normal" kid, well normal with autism, I guess.
So to be back at the doctor's office, and to know we had to come back soon for another appointment with a new doctor, and also come in soon for a 24 hour EEG to check for seizures....it kind of just knocked me out of my comfortable denial place that I had been in all summer.
So Tucker ate his chips, then we went over to the imaging center to get his chest X Ray. Once again, he did a fantastic job, he stood very still so that the XRay tech got a good picture of his chest. Then we went to the lab to get blood drawn. This lab is a lot smaller since it's only for the pediatric clinic. There were two older boys sitting outside the lab, I guess around 7 or 8 years old. They each had to get blood drawn, well the first brother was fine and it only took a minute. The second brother was crying before he even went, and then he was pretty hysterical when the lab tech pulled out the needle. The mom was talking to him like he had gotten labs drawn many times, and he knew that it would be over very quickly if he just stopped yelling. I told mom "get Tucker out of here!" lol, because if that big kid was screaming and in hysterics, Tucker was going to think the lab tech was beating him up or something! Mom took Tucker for a walk down the hall until the boy was done. Then it was Tucker's turn, and we went in. He did really well, I put his Teddy Bear song on the IPhone, and he sat very still while the tech drew a few vials of blood. After this, we left the office, and drove away into Houston traffic.
We were ready to go home, by then it was about 3pm. Tucker fell asleep pretty quickly, and about an hour later he woke up "Morgan! Grace!" We hadn't planned on stopping in Lake Charles because we were tired and ready to go home, but we had to stop to eat anyways, so we changed our minds :) Aunt Kim and the girls met us at Logan's, and Tucker was so happy to see them. He licked all of the peanuts and the girls fought over who got to sit next to him. Then Grace had to go to the bathroom, so of course Tucker and I followed. Tucker pee peed on the potty, well mainly the floor, but some of it made it in! He was so proud of himself again, so we made a very big deal out of it.
So now it has been two weeks since the Houston visits. Dr. K called to let us know that Tucker had glucose in his urine, meaning that his blood sugars are too high, so it is spilling over. I was pretty adamant with the nurse that her results had to be wrong, as Tucker's blood sugar readings at home have been low. She told me that the test was right, and I needed to follow up with the endocrinologist. So that night Chris bought a new battery for the glucose test meter we have, and the reading was 253....so wow, maybe we have been taking the blood checks at the wrong times, or maybe we have been using a near-dead meter. I don't know. So we have gone back to monitoring his blood sugar a lot more often, and luckily we haven't had a reading over 200 again, and nothing near the readings in the 400s that we had last October when we learned about this problem.
I have gotten in touch with the sleep specialist, and we are scheduled to go to Houston to see her, and maybe stay overnight for a sleep study. It is a Friday so I took off of work and Chris and I will go together. Then in October, Tucker will have his 24 hour EEG. I did not take off of work, and Chris will be going to Houston with Tucker for 2 days for that. So we will have been to Houston in August, September, and October of this year. Hopefully after that we don't go back until February for follow up appointments, we are hoping that everything looks good on the tests.
I haven't heard anything back about any of the other lab work, so I think everything must be fine :)
Tucker's button has also been leaking a lot lately, which in the old days used to mean that he was sick. Well it hasn't leaked like this in years, and we keep changing the buttons out (we usually change them about every 3 months, it's not hard at all to do). So the other day Jackie was watching him and she changed his button out because his food was pouring out all over the place! So I called the surgeon, whom we hadn't seen in over 2 years (!! wow, that is embarassing), and they said of course his button is leaking, he is wearing the same size as he has for 3 years. Chris took him in to the see the surgeon last week and they ordered a new longer button. We just changed insurance over to my work insurance so we get to move back to our former DME company (yay!) to supply all of Tucker's food, so I got the orders faxed over to them. We got a new button on Saturday, and Chris and I switched it out on Sunday. He is still leaking a lot, but by next week he should be doing much better.
I hope to update soon about the AMAZING progress Tucker is making with speech and behavior, and the new feeding protocol we will be working on, I promise you, Tucker is the hardest working 5 year old around! :)
Thursday, August 11, 2011
Trip to Houston
It has been way too long since I updated, more than a month. My job has been crazy busy this summer, but things are finally starting to calm down.
Tucker started school on Wednesday, and he will continue with ABA therapy in the afternoons after school. Hopefully he adjusts to the change well. Last year he was pretty tired in the first few weeks of school, but by November he was fine in the evenings.
He was SO ready to go back to school! He asks me to sing the school song all the time, and I still have to name all of his classmates. Of course, he is repeating the 4 year old class, so he will have all new friends, but I'm sure he'll like them, too. So far his teacher is totally amazed by how he has been in class, he has two "excellent" days in a row!!
So just an update:
The 4th member of our family, Buck, got very sick a few weeks ago, and we thought we would have to put him to sleep. We were very sad and stressed out for a couple of days, and Chris is now getting used to Buck's medicine schedule. Buck has been feeling much much better, and the vet's strict orders of having him inside in the air conditioning all day has made him quite happy! He really is a very good dog, but he is a Catahoula hunting dog, not really meant for an inside dog. So far it is okay, but he is just too big and too wild to be out of his cage too much. Of course, when he is out of his cage, Tucker gets in! I think he wishes he was a dog.
I took two days off from work last week, and Mom and I took Tucker to Houston. Tucker saw Dr. K, the mito doctor, for a 6 month check up and to get annual labs drawn. He also saw Dr. P for the first time, she is also a doctor in the mitochondrial clinic, she is both a pulmonologist and an immunologist, so she covered lots of issues.
Tucker has been very well-behaved lately, as well as less anxious and happier. He was so very good during this trip, much better than we could have expected any 5 year old to be. First of all, the ride is about 6 hours long. Then there is the waiting for the doctor (one doctor ran over 2 hours late!), waiting for the nurse, waiting for lab paperwork, waiting for lab techs, getting blood drawn (ouch!), and navigating our way out of the doctors office, through the parking garage, and out on the streets to our hotel. So there are obviously many times during the two days where Tucker could have had a meltdown, and we were expecting one. But he watched his videos and listened to my IPhone for Jason Aldean songs, as well as looking in magazines for pictures of bears.
We slept in Lake Charles Monday night, and Tucker had an absolute blast playing with Morgan and Grace. He was VERY upset when we left Tuesday morning without them! He wanted them to come with him :(
On Tuesday morning we headed to see Dr. K. Dr. K was very pleased with how Tucker looks, and how he has been doing. She said this is exactly where she'd like him to stay, or improve of course. She also commented that he was doing better with speech and eye contact, although he did not really show off like he could have. His blood pressure was high at first when they took it in his leg, but when they re-checked in his arm, it was fine. Missy (Samuel and Lauren's mom) works for the clinic, so she came and talked to us for awhile. It was so great to see her, I had lost her cell phone number, so I hadn't talked to her in a long time.
There was a very exciting part to the appointment-all of the research into mitochondrial disease has yielded a new genetic test. Before this test, Tucker was tested for 8 known genetic causes of mitochondrial disease, and they all came back negative. The new blood test can check for over 400 nuclear DNA causes of mitochondrial disorder. This can provide much more information about mitochondrial disease and the cause of the disease and each type of disease. Once a gene is isolated, then it will be much easier for other family members to get tested to see if they are affected, carriers, etc. The test just became available 5 weeks ago, so Tucker is towards the beginning of the testing. There is a long waiting period for the results, so I am not sure when we will hear back. Dr. K also ordered all of the regular blood and urine tests, so we headed over to the lab.
First, we tried to get Tucker to pee pee in the cup. Tucker has been really into using the potty lately. He likes to stand up by the potty and pee pee near the potty, not in it! I have cleaned pee off the floor and wall many times in the last few weeks, and he is SO proud of himself! He says "pee pee on the toilet." Then he flushes, even though there is no reason to. So anyways, he does pee on demand sometimes, so I tried to get him to put some urine in the cup for about 10 minutes. It did not work, so we had to put the baggie on him to collect it. He was very uncomfortable with that, but it had to be done.
Then we went to sign in at the hospital lab, which took awhile, then we went to the lab, then Tucker started freaking out because he knew he had to get blood drawn. The last two times we went to Houston, Chris has come with us to hold Tucker down for the blood draws. Both times Tucker just held his arm out and acted like it was no big deal. So this time Chris did not come, and of course he freaked out! He actually picked Mom to hold him, so Mom had to hold one arm and hold down both legs while the tech took the blood and I sang! The weird part was that Tucker was freaking out and screaming "Go see Samuel! Go see Samuel!" Mom and I looked at eachother, and I asked him "you want to see Samuel?" He repeated "Go see Samuel," I told him that he can't, that Samuel is in heaven. (He is a little boy that we all love that had mitochondrial disease.) I told him we could go see Samuel's mommy back at the clinic after he gave his blood (we had to bring some of the blood back to be Fed Exed out of state). The very odd thing is that Tucker only met Samuel three times in his life, and all of them were at least a year ago. In October we stayed at their home while we were in Houston (Samuel passed away last September) and Tucker really enjoyed being there. Later when we saw Missy again, she said that Samuel visits people often; so maybe it wasn't so strange that Tucker was asking for him. We thought it was sweet.
So anyways, once the tech took the first vial of blood (there were about 10 in all), Tucker just stared at her, and we started naming the colors of the tubes! Tucker really is hilarious. We checked the urine baggy, it was dry. We then headed back across the street to bring the blood vial to Missy. She called me when we were in the elevator, wondering what took us so long. I told her we went as fast as we could, and she said "it's the next office over." I looked at mom and said WHAT??? So all of this time, we have been navigating the maze that is the physician's tower and hospital, getting Tucker admitted to the actual hospital, then going through that maze to get to the hospital lab, when there was a lab literally next door to Dr. K.'s office??? Turning a 20 minute process into a 2 hour process?? Now that is dumb, for real! lol We felt like idiots!
We dropped the sample off, then we went downstairs for lunch. There is a sandwich shop, the food was delicious, and we were all starving after our hospital trip. Tucker ate his Cheetos, and he was content. So our last task was to turn in some urine for the sample. We went to the restroom near the hospital lab (they already had all of the paperwork so we went back there) to check Tucker's pee pee bag. Well it was full, so that was good. While I was trying to change Tucker, he walked over to the toilet and started peeing on the floor! He was way too short for the actual potty, but he was trying :)
I sort of held him up while also cheering him on, yelling "Nana, Tucker is peeing on the potty!!" when really his aim is horrible and he was peeing on the back of the toilet. Mom is saying "good job" and the lady in the next stall is cracking up laughing at me. So then I sent Tucker out with no bottoms on so that Mom could change him, and I had to clean the pee pee from all over. Tucker had the biggest grin, like he had just ran a marathon or something, he was so proud of himself for peeing on the potty.
We got him dressed, we turned in the urine cup, and we headed out. Tucker was so happy to be finally leaving and going to the hotel. Mom and I drove around for awhile, then we picked a hotel and checked in. We took a two hour nap, (which we all needed), but of course Tucker had to turn all of the lamps on and then off first. He also got to press the elevator buttons many times, as we were on the 4th floor. We had packed our swimsuits, but in the 108 degree heat index, it was even too hot to swim! We spent the evening at Target and ate dinner at Olive Garden. Tucker got his own kid-sized pizza, and he was so happy to lick every last bit.
I need to update about the next day, when Tucker had his first appointment with Dr. P. Hopefully I get to that sometime soon!
Tucker started school on Wednesday, and he will continue with ABA therapy in the afternoons after school. Hopefully he adjusts to the change well. Last year he was pretty tired in the first few weeks of school, but by November he was fine in the evenings.
He was SO ready to go back to school! He asks me to sing the school song all the time, and I still have to name all of his classmates. Of course, he is repeating the 4 year old class, so he will have all new friends, but I'm sure he'll like them, too. So far his teacher is totally amazed by how he has been in class, he has two "excellent" days in a row!!
So just an update:
The 4th member of our family, Buck, got very sick a few weeks ago, and we thought we would have to put him to sleep. We were very sad and stressed out for a couple of days, and Chris is now getting used to Buck's medicine schedule. Buck has been feeling much much better, and the vet's strict orders of having him inside in the air conditioning all day has made him quite happy! He really is a very good dog, but he is a Catahoula hunting dog, not really meant for an inside dog. So far it is okay, but he is just too big and too wild to be out of his cage too much. Of course, when he is out of his cage, Tucker gets in! I think he wishes he was a dog.
I took two days off from work last week, and Mom and I took Tucker to Houston. Tucker saw Dr. K, the mito doctor, for a 6 month check up and to get annual labs drawn. He also saw Dr. P for the first time, she is also a doctor in the mitochondrial clinic, she is both a pulmonologist and an immunologist, so she covered lots of issues.
Tucker has been very well-behaved lately, as well as less anxious and happier. He was so very good during this trip, much better than we could have expected any 5 year old to be. First of all, the ride is about 6 hours long. Then there is the waiting for the doctor (one doctor ran over 2 hours late!), waiting for the nurse, waiting for lab paperwork, waiting for lab techs, getting blood drawn (ouch!), and navigating our way out of the doctors office, through the parking garage, and out on the streets to our hotel. So there are obviously many times during the two days where Tucker could have had a meltdown, and we were expecting one. But he watched his videos and listened to my IPhone for Jason Aldean songs, as well as looking in magazines for pictures of bears.
We slept in Lake Charles Monday night, and Tucker had an absolute blast playing with Morgan and Grace. He was VERY upset when we left Tuesday morning without them! He wanted them to come with him :(
On Tuesday morning we headed to see Dr. K. Dr. K was very pleased with how Tucker looks, and how he has been doing. She said this is exactly where she'd like him to stay, or improve of course. She also commented that he was doing better with speech and eye contact, although he did not really show off like he could have. His blood pressure was high at first when they took it in his leg, but when they re-checked in his arm, it was fine. Missy (Samuel and Lauren's mom) works for the clinic, so she came and talked to us for awhile. It was so great to see her, I had lost her cell phone number, so I hadn't talked to her in a long time.
There was a very exciting part to the appointment-all of the research into mitochondrial disease has yielded a new genetic test. Before this test, Tucker was tested for 8 known genetic causes of mitochondrial disease, and they all came back negative. The new blood test can check for over 400 nuclear DNA causes of mitochondrial disorder. This can provide much more information about mitochondrial disease and the cause of the disease and each type of disease. Once a gene is isolated, then it will be much easier for other family members to get tested to see if they are affected, carriers, etc. The test just became available 5 weeks ago, so Tucker is towards the beginning of the testing. There is a long waiting period for the results, so I am not sure when we will hear back. Dr. K also ordered all of the regular blood and urine tests, so we headed over to the lab.
First, we tried to get Tucker to pee pee in the cup. Tucker has been really into using the potty lately. He likes to stand up by the potty and pee pee near the potty, not in it! I have cleaned pee off the floor and wall many times in the last few weeks, and he is SO proud of himself! He says "pee pee on the toilet." Then he flushes, even though there is no reason to. So anyways, he does pee on demand sometimes, so I tried to get him to put some urine in the cup for about 10 minutes. It did not work, so we had to put the baggie on him to collect it. He was very uncomfortable with that, but it had to be done.
Then we went to sign in at the hospital lab, which took awhile, then we went to the lab, then Tucker started freaking out because he knew he had to get blood drawn. The last two times we went to Houston, Chris has come with us to hold Tucker down for the blood draws. Both times Tucker just held his arm out and acted like it was no big deal. So this time Chris did not come, and of course he freaked out! He actually picked Mom to hold him, so Mom had to hold one arm and hold down both legs while the tech took the blood and I sang! The weird part was that Tucker was freaking out and screaming "Go see Samuel! Go see Samuel!" Mom and I looked at eachother, and I asked him "you want to see Samuel?" He repeated "Go see Samuel," I told him that he can't, that Samuel is in heaven. (He is a little boy that we all love that had mitochondrial disease.) I told him we could go see Samuel's mommy back at the clinic after he gave his blood (we had to bring some of the blood back to be Fed Exed out of state). The very odd thing is that Tucker only met Samuel three times in his life, and all of them were at least a year ago. In October we stayed at their home while we were in Houston (Samuel passed away last September) and Tucker really enjoyed being there. Later when we saw Missy again, she said that Samuel visits people often; so maybe it wasn't so strange that Tucker was asking for him. We thought it was sweet.
So anyways, once the tech took the first vial of blood (there were about 10 in all), Tucker just stared at her, and we started naming the colors of the tubes! Tucker really is hilarious. We checked the urine baggy, it was dry. We then headed back across the street to bring the blood vial to Missy. She called me when we were in the elevator, wondering what took us so long. I told her we went as fast as we could, and she said "it's the next office over." I looked at mom and said WHAT??? So all of this time, we have been navigating the maze that is the physician's tower and hospital, getting Tucker admitted to the actual hospital, then going through that maze to get to the hospital lab, when there was a lab literally next door to Dr. K.'s office??? Turning a 20 minute process into a 2 hour process?? Now that is dumb, for real! lol We felt like idiots!
We dropped the sample off, then we went downstairs for lunch. There is a sandwich shop, the food was delicious, and we were all starving after our hospital trip. Tucker ate his Cheetos, and he was content. So our last task was to turn in some urine for the sample. We went to the restroom near the hospital lab (they already had all of the paperwork so we went back there) to check Tucker's pee pee bag. Well it was full, so that was good. While I was trying to change Tucker, he walked over to the toilet and started peeing on the floor! He was way too short for the actual potty, but he was trying :)
I sort of held him up while also cheering him on, yelling "Nana, Tucker is peeing on the potty!!" when really his aim is horrible and he was peeing on the back of the toilet. Mom is saying "good job" and the lady in the next stall is cracking up laughing at me. So then I sent Tucker out with no bottoms on so that Mom could change him, and I had to clean the pee pee from all over. Tucker had the biggest grin, like he had just ran a marathon or something, he was so proud of himself for peeing on the potty.
We got him dressed, we turned in the urine cup, and we headed out. Tucker was so happy to be finally leaving and going to the hotel. Mom and I drove around for awhile, then we picked a hotel and checked in. We took a two hour nap, (which we all needed), but of course Tucker had to turn all of the lamps on and then off first. He also got to press the elevator buttons many times, as we were on the 4th floor. We had packed our swimsuits, but in the 108 degree heat index, it was even too hot to swim! We spent the evening at Target and ate dinner at Olive Garden. Tucker got his own kid-sized pizza, and he was so happy to lick every last bit.
I need to update about the next day, when Tucker had his first appointment with Dr. P. Hopefully I get to that sometime soon!
Wednesday, February 9, 2011
Two "Snow" Days and a trip to Houston
Tucker was out of school for two days last week due to wintry weather conditions. It was pretty cold, but no snow or sleet, so I'm not completely sure why the schools were shut. On Wednesday night, I got a phone call at 11pm saying that schools were closed the next day. I figured that meant that Gina would be home, too, and wouldn't she love to sleep late? Not going to happen with Tucker going over! ;)
So on Thursday morning, I got him up and ready, and he went over to GiGi's house (he pronouces it "g" like girl, not giraffe), he wakes up in the mornings asking to go to Gee Gee's house, forget Nana, Poppy, or anyone else who lives there! Haha, they aren't the main attraction! He was happy to go over there, but not too happy that Gee Gee was still in bed. He likes riding to bring her to high school every morning, she ended up locking him out of the room because he wouldn't leave her alone. He had a nice quiet day with my mom and sisters, and then on Friday, LSU was closed, so Chris and I were home with Tucker.
On Thursday night Chris, Tucker, Sarah, and I rode over to Amy's house to get the money from the fishing tournament. It was amazing, it was all in a huge envelope. So on Friday morning we went to the bank to deposit it into Tucker's savings account. Then we ran a few errands, and Tucker enjoyed some crackers and licked a hamburger for lunch. He was very well-behaved and enjoyed the day out, then we all took a long nap. It was a nice day off of work and school.
Friday night Tucker went to Sissy and Pops's house, and Chris and I went to Outback with Sarah and Brad. It has been months since we have been able to get out like that, and we had a very nice time. On Saturday and Sunday Chris and I both didn't feel too well, so we mainly stayed at home. It's cold season, it seems that everyone is just getting over being sick or just starting to get sick. I can't seem to kick this cold, and it is wearing me out. Tucker has been doing very well, he is talking a lot, and using a bigger vocabulary.
We were supposed to go to the Mito Walk last Saturday to raise money and awareness for Mitochondrial Disease. Unfortunately, the weather in Houston was bad also, so it got cancelled. We left Monday afternoon for Tucker's Tuesday morning appointment with Dr. K. Tucker was very good for the ride, he watched Kipper on his DVD player and looked out the window for the hotel. He was very excited to be staying in a hotel again, even though it wasn't as nice as Give Kids the World. He laid right between me and Chris and had the biggest grin:)
Dr. K said Tucker looks great, and we don't have to go back for 6 months. That is really good news. Ever since he has been on the mito supplements and we have been watching his sugars and changed his food, his whole body is healthier. He was not too interested in seeing Dr. K or her residents; he was much more interested in her spinning chair and the Metro train that was outside the window.
When we go back in August, we will see Dr K, Dr P (the lung doctor and immunologist who specializes in mito kids) and the autism specialist who specializes in behavior. So it was pretty much a boring appointment, which is of course the best kind.
We got to see Missy, who now works for Dr K, it was so nice to see her and talk to her for a bit. We also saw Ali and Alex for a short time in the waiting room; Alex had a very bad infection over Christmas, and the quick action of the mito doctors and PICU doctors saved his life. He was all smiles, telling me about Pokemon characters I had never heard of, haha.
After the appointment, we rode the train in the park a few times, ate a burger at Smashburger (Chris actually liked a place that I picked for once!), then headed home. Tucker was good for the whole ride, until we got home. We told him we were going home, but he cried so hard for the hotel! The next time he goes to a hotel will be in May (for Jackie & Justin's beach wedding) or maybe in April (for the Mito family get together that we hope to attend), so he will have to wait a while.
I started a new job on January 3, and it is going well. It has been a major life change, and we are all still adjusting to it. January was such a very busy month, and it doesn't seem like anything is slowing down soon, but we are trying to get setteld into a routine. It is so nice to have Chris at home, now that hunting season is over and he does not have the pressure to work overtime every weekend, he is starting to run more errands and do more with Tucker and the housework. We still haven't figured out how to get everything done....the house is a wreck! But Tucker is doing well and hasn't been sick for all of January (knock on wood! I almost hate to type those words, that usually jinxes us.), so we are counting this new job as a blessing and a very positive change.
We will be working on potty training (again) and setting up summer therapy plans over the next few months. Thanks for checking in on us and for all of your prayers.
Tuesday, October 26, 2010
The Last Few Days
A lot has been going on over the last week or so; Tucker attended a full week of school last week, yay! I didn't want to post about his first day back, and brag that it was a success only to jinx us. So I waited until we were done, including a great field trip. Tucker started feeling better on a Wednesday, then that Thursday I kept him home to monitor him, and he was much better. That Friday, school was out for parent/teacher conferences, so Tucker didn't go back to school until Monday; he was out for a total of 8 school days, and 13 calendar days. We were quite nervous about how we would get back into the school routine, especially when his speech therapist came to our house and said she could tell he was out of his work routine.
So that Monday morning I woke him up and told him he was going to school. He was SO excited, and rushed to get ready. He had a hard time letting go of Spiderman, but I promised that he would wait on the couch until Tucker came home. We ended up outside a full ten minutes before we usually are, and he kept looking down the road, waiting for the bus to appear. When the bus arrived, he ran on! The bus driver said they missed him, I replied that obviously Tucker missed them, too. That day was pretty hard for me, I missed Tucker:( I stayed home, just in case the teacher called me and needed me to pick him up. It was so odd to have "me" time again, even though most of the day was spent on neglected housework. At least I could control the TV and/or radio, I had watched Elmo Firetruck and listened to Chamillionare rap songs for a whole week!
When Tucker got off the bus, he ran past me into the house. He said two words when he got home: "Peye-da-man", then he found him, then "Huck" meaning the Incredible Hulk. He held both of them and was so happy! No "Mommy", haha! He did not miss me so much as his stuff.
He did pretty well at OT that day; he had missed the previous week from being sick. According to his notes, he had a good day at school, so by Monday night he was very tired. He made it through the rest of the week just fine, and he got a good behavior note on Thursday.
Tucker missed school on Monday and Tuesday because he made a trip to Houston. Tucker had his echo/EKG on his heart on Monday, then an appointment with the mito dr, Dr K, Tuesday.
The trip was not as easy as usual; Tucker almost never sleeps in the car, he really never has. So when we take a 5 hour car trip, you would think he would at least sleep a little, but he doesn't. He is very good in the car and usually enjoys trips, but after about an hour he started asking to "get out the car" and "home". So we stopped a few times for gasoline and breakfast, and he was not happy to get back in the car each time. I was worried that he would be even more upset when we got to the hospital, but he was fine. I think he was just happy to run around. We signed in, and Tucker got his orange patient bracelet. Chris took Tucker for escalator rides for about 10 minutes, (he really loves that!), then we went into the imaging center. Tucker looked around the waiting room, then looked down at his bracelet, and burst into tears! He said "home, home" and tried to escape out of the door. We had already told him that it wouldn't hurt, so he decided to believe us. He sat down and watched Mickey Mouse on the laptop. He was happy when the techs came to get us, and he was very compliant with the EKG. The tech told him the leads were stickers, so Tucker liked that. For the echo, Tucker had to lie down for at least 20 minutes while the tech moved the wand around and took pictures of his heart. We thought that was going to be hard; they had even offered to sedate him, which we declined. They had on cartoons for Tucker to watch; well, he put his hands behind his head, propped his leg up, and watched the monitor with the pictures of his heart. He was totally at ease, like he watches echos all day long. He even "helped" the tech move the wand around. It was dark, and Chris and I both almost nodded off. When the tech said she was done, we were surprised; we thought it was going to be much longer.
We left and headed to the Knights. Lauren was sick, and her pedi wasn't sure if she was contagious, so she spent the night at her grandparents' house so Tucker wouldn't get sick. So that left the whole house of toys for Tucker, he loved running around getting into all kinds of trouble! Pictures and signs of Samuel were everywhere; Tucker didn't understand that Samuel wasn't there, but he appreciated playing with all of his toys and bossing his Mommy:) I got to talk to Missy a little bit while Tucker napped; I miss her so much, I wish we could have talked more. We ate dinner with Ben and Missy, then we got ready for bed. Tucker was running around like a crazy person, and by 10pm he was not even tired. Missy gave Tucker his first dose of Melatonin, which helped him sleep. Within 10 minutes he was out, and he really needed to sleep after his long day. We will be using Melatonin from now on. We are not trying to knock Tucker out, it's just that sometimes he literally can not slow his body down to go to sleep, and his sleep is necessary for his health. Dr. K said it was fine to use Melatonin.
The next morning we headed out early for our appointment with Dr. K. We had to wait for about 20 minutes in the waiting room, which is very short for this doctor. The room got crowded, though, so we had to buckle Tucker into his stroller; he does not know how to keep his hands to himself! We took out the laptop and put on his Mickey movie with his headphones. I have said this before: thank goodness for technology! I don't know how else we would occupy Tucker for such long waiting times. Tucker was so compliant for the weight and height check, and even the blood pressure check, which he usually HATES and fights against. The resident came into the room and examined Tucker and talked to us. Going to a teaching hospital is such a different experience for us. We have been in doctors' offices where one or maybe two residents observe a doctor's appointment, but at this office the doctor comes in with a whole team of students. Tucker was pretty rude to them, he wouldn't even look at Dr. K until she touched his purse! Then he was pretty mad at her.
Dr K thinks Tucker looks great, she said that he looks much different than when she first met him. It was funny because Missy said the same thing to me that morning. They both said he looks much more proportional, something that I had noticed also. He used to be all belly with little stick arms and legs, and he is much more solid now and more proportional. Missy asked what we had changed, and the only real answer is that we added his mito supplements. So they are doing something positive!
Dr K even suggested that we increase his dose of CoQ10, but if he seems to have too much energy, we could drop it back down. It's funny, because we give Tucker the supplements to increase his energy chain at the cellular level; while at the same time, he seems to have a ridiculous amount of energy! He bounces off the walls sometimes, and has attention problems because he can't slow down.
One of our main concerns was Tucker's high blood sugar. Tucker has random high blood sugar readings, and lately they are almost to 300. This is very alarming, but for the most part his blood sugar is normal. So the endocrinologist in BR decided to just monitor him, and Dr. K agrees. She said it would be hard to decide how much insulin to give Tucker because we might give him too much and his sugar could get too low. She wants us to see the Endo in Houston, along with the Pulmonologist/Immunologist (one doctor who takes care of both specialties) that specialize in Mito the next time we come in. We are slowly moving Tucker's specialties over to Houston, while also keeping the ones in BR for regular monitoring.
Dr K ordered the second round of genetic tests for Depletion Syndromes. The first round was taken in July, and they all came back negative. The hope is that we find the exact gene that caused Tucker's mito, that way the family and our future kids could get tested for that gene to see if we are carriers and/or affected. It would also help mito research to know what genes cause which types of mito. We know that we may never find that gene, but we will still take all the tests to see. Dr. K also ordered another A1C to test Tucker's blood sugar over the long-term, and an IgG level to check his immunity level. The last few times that Tucker had blood drawn, it was easy for the techs to find a vein and get the blood; the problem was that Tucker flipped out and had to be physically held down by at least two people to get the blood drawn. This is the main reason that I made Chris come with me to Houston; Mom and I had a hard time forcing him to lie down last time. This time, we told him that we had to get blood drawn so that we could go home. Tucker went into the basement lab and sat on Chris's lap, held out his arm, and watched as the tech set up. Once she stuck him, he held her hand and sat very patiently! Chris and I exchanged glances, and wondered where our feisty Tucker was! The tech said she was reading her Bible, waiting for next patient, so she must have gotten blessed by having a good little boy to take labs for. I looked at her desk, and sure enough, an open Bible was sitting there. I told her we should always ask our techs to read the Bible, because that was the best experience we'd ever had, lol.
Tucker went back to school today, and we hope to have an uneventful few days. Then on Saturday we have our annual Halloween party (it's only the second one) for the kids. We started this last year, and it was a big hit! We have games, trick-or-treat, crafts, and Halloween-themed snacks. The theme is usually "fun, not scary", and the kids love that. Chris tries to sneak scary elements in, but so far I haven't let him! I like to give the kids a chance to get together in their costumes, and it's a fun reason to get together. Most of us go our own ways for the actual Halloween night, so it's nice to see all of the kids together in their costumes. I hope this party is as fun as last year's, but I have quite a bit to do before then.
Friday, July 30, 2010
The Last Few Days
Sorry I have not gotten around to posting the specific medical details....once we got home from Houston we resumed our usual business!! I have to remind myself to breathe some days, I swear we are so busy.
My two cousins Morgan and Grace are staying at my grandparents' house this week, so we have taking every chance to see them. The other day we all watched Billy the Exterminator (on TV) try to catch a raccoon....well that's something I never thought I would watch!
We also ate with the Townsends Wednesday night for Justin's birthday (he is 25....we are all getting so old!!).
Yesterday I had two visits with "old" friends. I met my friend Meredith in college, and we have stayed in touch ever since. Talking to her is like getting a breath of fresh air...she is funny and so blunt...she has been teaching in Memphis public schools for 4 years, so she always has some interesting stories to share! Then I ate dinner with three friends....Lacy, Melissa, and Lauren....it is so weird, I have to say! We all were best friends in middle school, then lost touch over various times in our lives, and now we all have at least one child, all around the same age, and we all needed a night out. It felt so natural to change topics, bringing up Tucker and different facets of his diagnosis, right along with every other topic under the sun. Tucker's issues and delays are often the "elephant in the room." People don't know how to approach the subject until I do, and I often don't or can't approach it because I don't want to kill the conversation or cry at the dinner table.....so last night was perfect for me in so many ways....we even made jokes about Tucker, because, well, he is pretty funny!!
On Wednesday Tucker's new teacher Mrs. Amy emailed me, saying that it was okay for us to drop by the new classroom any afternoon this week. Well Wednesday was the only good day for us, so we went over. Tucker was SO excited to go to "big school." He walked in like he had been there for years....of course holding his Daddy's hand gives him confidence:) The teacher let him explore everything in the classroom while Chris and I talked about Tucker and his new diagnosis, along with his "old" problems, like eating and potty training, as well as his complete lack of an attention span. I have to say, Mrs. Amy already knew everything we told her! Mrs. Mary must have given her some good notes on Tucker! My cousin Amanda teaches at the school, and she had even stopped by and told her about the mito diagnosis, although I explained it in more detail. It really won't affect the way Mrs. Amy teaches Tucker, but I do want her to watch for any symptoms of overtiredness. I also have to file some paperwork with the school nurse, but that's about it unless his symptoms show up this year....praying that they don't!!
Tucker spoke several three word sentences to Mrs. Amy, but she didn't understand any of them!! We had to translate, but I figure after a few weeks she will understand him, or maybe he will start talking more clearly! I love the way the class will be set up, because there are supposed to be 6 kids with special needs, and 6 typical kids....they structure the day like a "typical" preschool, and take lots of time and extra effort with the special needs kids. So I think this will really push Tucker, which I love. Also we hope his friend Wes gets to be in his class, because Tucker likes to follow Wes around and do what he does....except eat!!
Today we are getting ready to go back to Houston. I mentioned in my last blog that the lab had a mess-up, so we are bringing Tucker back to give more blood....fun fun!
I wanted to get all the details of the last few days out, because they are all important.
But as for the emotions of the last few days....they have been hard to handle.
One of the hardest things I heard from the doctor was that Tucker is going to get worse, and we don't know how.
The other hard thing she said was that most of his problems can not be explained by mito, but by his prematurity....such as his sensory issues and refusal to eat. For those who don't know, since I may act like it doesn't bother me, these feeding issues are my true nemesis!! Eating factors into almost every routine and every part of the day, so when your kid doesn't like to eat, it affects every part of your life. I was SO hoping that his feeding issues were a "mito" thing, that way I could at least have something to blame! That might sound horrible, but Tucker has had such great therapists and feeding plans for years, with way too slow progress....
So to hear that so much of what Tucker has been through has been due to prematurity, over 4 years later....and now we have so much ahead of us due to mito....it really makes me want to scream!!! Like "this is not fair!!!! we got hit from the beginning, got a little better, only to be hit with all of the neurologic issues?" With prematurity, as bad as it was, we always had the hope that each day we were moving in a positive direction...every day his lungs got bigger and stronger....every day we got closer to getting the trach out.....we have no experience going the other way...
Today I am just thankful for our support system, there are so many people praying for us and Tucker, and that just has to be enough for us right now.
Tuesday, July 27, 2010
"We wait for peace, to no avail; for a time of healing, but terror comes instead." Jeremiah 14:19
From the title, maybe you can guess how our appointment went today.
I was hoping against hope that Tucker did not have Mitochondrial disorder. After waiting for over an hour to see the doctor, she walked in and got Tucker his very own Mito Mike...a turtle they give to kids with Mitochondrial Disorder. Its shirt says "slow and steady wins the race", which if any of you know my mother, that comes out of her mouth every 3rd sentence. So anyways....
Tucker's lumbar puncture came back normal, which is great news in and of itself, but a lumbar puncture doesn't test for mito-it tests for other things, and can indicate the severity of mito.
The muscle biopsy is what they look at for mito. So it is about a 30 minute conversation (which I will reproduce here when I'm up to it, graphics included or your head will spin), but the basic point is Tucker has mitochondrial disorder. The mitochondrioa throughout his body do not produce enough energy to make his body run properly, and in Tucker's case it manifests in neurologic symptoms (developmental delay, speech problems, autistic features, microcephaly). Tucker's body produces double the amount of mitochondria it needs to get the same amount of work done.
Over time, a normal person's mitochondria copies itself to other cells so that the body can grow and live as old cells die. Well as Tucker's mito copies itself, there is some kind of mistake going on. Theoretically, he was born with normal mito in his body, but over time, the mito gets worse and worse as the copying mistake repeats itself. This is called a Mitochondrial Depletion syndrome. There are many of these syndromes, so the Dr took more blood and urine today to try to isolate the actual gene so that she can give us a more acurate prognosis.
Bottom line...Tucker has Mito, and it will get worse as time goes on. Some mito patients die before their first birthday, many die at a very old age....the problem as a parent is the "wait and see" game, because you never know which organ will be affected next or how severely. The Dr is pretty certain that Tucker's lung issues were caused only by prematurity and not mito, because if it was mito then his lungs wouldn't have gotten better.
All mito patients are monitored closely for problems with their heart, liver, and kidneys because these are typically problem areas. We have been blessed with the fact that all of these seem fine on Tucker...it is just his neurologic symptoms that are very concerning. Bad part-it could all change at any time. No peace of mind on the way.
There is also a 25% chance that this could occur in future children...just throwing that out there, as that of course is a big concern of ours.
I will update much more in detail in the near future. But right now Chris and my heads are still spinning...I have to get it out there tonight, but it is not nearly as detailed as it needs to be, and I'm sure you will all have questions that I left unanswered.
So many people have emailed, texted, called, and facebooked us. Thank you all so much for caring about our family! We will need that support even more in the future, trust me.
Tucker's lumbar puncture came back normal, which is great news in and of itself, but a lumbar puncture doesn't test for mito-it tests for other things, and can indicate the severity of mito.
The muscle biopsy is what they look at for mito. So it is about a 30 minute conversation (which I will reproduce here when I'm up to it, graphics included or your head will spin), but the basic point is Tucker has mitochondrial disorder. The mitochondrioa throughout his body do not produce enough energy to make his body run properly, and in Tucker's case it manifests in neurologic symptoms (developmental delay, speech problems, autistic features, microcephaly). Tucker's body produces double the amount of mitochondria it needs to get the same amount of work done.
Over time, a normal person's mitochondria copies itself to other cells so that the body can grow and live as old cells die. Well as Tucker's mito copies itself, there is some kind of mistake going on. Theoretically, he was born with normal mito in his body, but over time, the mito gets worse and worse as the copying mistake repeats itself. This is called a Mitochondrial Depletion syndrome. There are many of these syndromes, so the Dr took more blood and urine today to try to isolate the actual gene so that she can give us a more acurate prognosis.
Bottom line...Tucker has Mito, and it will get worse as time goes on. Some mito patients die before their first birthday, many die at a very old age....the problem as a parent is the "wait and see" game, because you never know which organ will be affected next or how severely. The Dr is pretty certain that Tucker's lung issues were caused only by prematurity and not mito, because if it was mito then his lungs wouldn't have gotten better.
All mito patients are monitored closely for problems with their heart, liver, and kidneys because these are typically problem areas. We have been blessed with the fact that all of these seem fine on Tucker...it is just his neurologic symptoms that are very concerning. Bad part-it could all change at any time. No peace of mind on the way.
There is also a 25% chance that this could occur in future children...just throwing that out there, as that of course is a big concern of ours.
I will update much more in detail in the near future. But right now Chris and my heads are still spinning...I have to get it out there tonight, but it is not nearly as detailed as it needs to be, and I'm sure you will all have questions that I left unanswered.
So many people have emailed, texted, called, and facebooked us. Thank you all so much for caring about our family! We will need that support even more in the future, trust me.
Monday, July 26, 2010
A Little More Fun, and a trip to Houston
I am posting twice in two days, crazy I know!
Yesterday was a little rough....Chris was pretty sore, but I think he feels even worse today. He had to go to work for a half-day, though, I hope it's not too bad. Chris is coming home at lunchtime, we are going to finish packing, then Chris, Mom, Tucker, and I are leaving for Texas. We are spending the night in a hotel about an hour outside of Houston, then tomorrow we will leave early to get to Tucker's 830 am appointment with the Mito specialist. Some people have asked me "what are you hoping to find out?" or "what is the best/worst case scenario for Tuesday?" Hmmmm....I have no idea! I think I have focused on the party, and the happiness surrounding that, and now we are switching gears back to reality....back to the future and the diagnosis, or non-diagnosis, if that makes any sense.
As Mom told me last week, and Chris told me last night..."Whatever is going on with Tucker has always been going on...we will just have a name for it now." "Whatever happens on Tuesday...Tucker is still our little boy, and our love for him is still as strong as ever."
So, we will see what happens on Tuesday, we will deal with it, and I will update about it! We hope to at least get some news, though...we have been living with the "no news is okay" for a long time....maybe we'll have a change in that situation.
Yesterday was supposed to be a restful recovery day...well it was for the most part.
I had to ride to WalMart for a few necessities for the trip, and Chris had to do a little more clean-up from the party, but we mainly sat around all day.
Around 3, my sister Sarah called to invite us to go swimming. Our neighbors and cousins are out of town for the week, so they told my sisters they could go swimming in their pool. Brad got a new crossbow, so he wanted Chris to come shoot with him while we all swam. Well, all of a sudden the tiredness and soreness went away!! Haha, nothing would keep Chris from shooting his bow, let alone a new one.
So I packed all of the swimming paraphenalia, fresh out of the dryer from yesterday, and we headed over. Sarah, Gina, Tyler, Susan, Molli, Tucker, and I ended up swimming, and Chris and Brad joined us later.
I told Tucker we were going swimming, so he had to get his swimsuit on. He started yelling "Fim" and "poo" which I hope means pool, haha!
He got into the water and acted like he had been swimming his whole life! The pool had a large shallow section where both he and Molli could walk around, and he floated around on his floaties in the deep end. His head went underwater several times, and he came up laughing each time. Gina played a game with him, where he would get on a raft, and she would count to 3, then dump him off of the raft. He would splash down and then float right back up, and scream "again" or "get on". Molli tried it once, but she didn't care for it! When Tucker had his floaties off, he clung to us at first, then ventured out more and more as time went on. He could reach in about half the pool, so once he realized that he walked all over and cried to have his floaties off. He tried the whole "in the pool, out of the pool, in the pool, etc." game, but I told him he had to stay in the whole time, because I wasn't chasing him around. Chris and Brad came in and threw him around, as well as helping him to "jump" from the side (really just falling).
This is Molli showing us how she can swim underwater! She did this about 100 times:)
Some dark clouds were out, and when we thought the lightning was going to start, we all got out. Molli threw a fit, but we promised her we would come back later. We went back to Mom's for awhile, then Molli was really angry when she had to go home. Chris offered to help Susan carry her swimming stuff and Molli to the car, but she said she had it under control. A few minutes later, we saw Susan chasing Molli down the driveway! Haha, she really didn't want to leave!
Tucker went to bed around 9 last night, like usual, but it was so hard to get him up and ready today. He slept the whole way to preschool. I think he will sleep for most of the drive today, which is good...he needs to rest. If we get to the hotel early enough tonight, we may take him swimming in the hotel pool. Past experience tells us that Tucker goes stir crazy in a hotel room, so that would be a good distraction. Tomorrow we have our appointment, then we plan to take Tucker on the train ride in the park a few dozen times (he LOVED it last time), then either meet my friend Missy for lunch or bring some lunch to her. Her little boy Samuel has mito, and he is having a tough time right now in the hospital. It will be nice to see her and give her a hug in person, although it stinks that the kids won't be able to play together:( Please pray for them as well as us!
Thursday, June 3, 2010
Long Overdue Update!
Oh, I have so much to update on, it has been way too long! (Warning, this is a superlong update!!)
Chris and I are probably going to buy a new computer Saturday, Yay! Hopefully it all works out, then I can update daily like I need to.
Two weeks ago Tucker had his muscle biopsy and lumbar puncture. For the past few years (but not since Tuck's birth), I have major anxiety the night before big appointments and/or any procedure. Big appointments can come with good or bad news, and they usually mean big changes for us. You would think minor procedures would be a breeze for us, but my anxiety actually gets worse each time!
The other day I came across this mom's blog, while I have never met her, I think this post sums up my feelings very well:
"It is surreal to be dealing with all of this again.I can certainly tell you it is far tougher this time around.When Presley was struggling the first 7 months of her life in the hospital, she was never truly ours.We had always shared her with doctors and nurses and surgeons.She didn't have a toy box full of her own toys at home,or a bedroom she shared with her sister,I didn't know what silly face to make to get a huge belly laugh out of her,I hadn't seen her and Mikah sitting together in the 'big' chair, while Mikah pretends to read to her,she hadn't crawl around the house with naughty intentions,pulled on Gus' ear,or frustrated her big brother by knocking over his carefully constructed blocks.I didn't know the annoying little stinker that would crawl into the kitchen every morning, yelling and screaming for her breakfast,We hadn't played 'Pat a cake' or 'Where's your nose?' or 'Peek a boo!' with that little love we shared with an entire PICU.But we have done all of those things this past year and a half, and we have had to share her with no one...she has been all ours,and our house is not 'home' until she comes back."
http://gilesfamilyof5.blogspot.com/
I totally understand this....when Tucker was born, he was "our" baby, we told ourselves that constantly...but he never really felt like ours until the day we brought him home 8 1/2 months later. Thankfully, we have not had another inpatient stay that lasted longer than 2 days since Tucker left the NICU...and that is a pretty HUGE deal when you consider all of his past medical issues. But as Tucker gets older, we know his little personality better, and the docs don't just take back our baby to put under and cut open, they take our bossy little fighter!
So...because I knew the anxiety would be with me Thursday night, we had tons of fun Thursday before Tucker's appointment with anesthesia. The drive to Houston takes about 5 hours (at least when Chris drives!) so we like to stop halfway in Lake Charles. That is where my aunt and uncle, along with two cousins, live, so we usually meet up with them. This time we got to Lake Charles in the middle of the day, so they were at work and school. We stopped off at the Lake Charles "beach" so that Tucker could stretch his legs. Wow, he loved it!! We were the only people there, and he had the kiddie playground all to himself.
Of course, by beach standards, it is not much of a beach! But this was the first time Tucker had ever stepped onto a beach, and he LOVED it! He walked in the waves and threw sticks in the water. We had a beach trip planned to Gulf Shores in July, but with the whole oil spill, we are pretty positive we are not going. So we will just have to come back to Lake Charles to get our beach fix!
I wrote Tucker's name in the sand...the little grooves around his name were his work.
And I got a few pics of him throwing the sticks.
After awhile we got back in the car and headed to Houston. We got to the hospital about 2 hours early. There is a huge zoo right across the street, but we decided 2 hours was not long enough for a zoo trip. So we opted for a train ride. This is all in Hermann Park, which is a huge park with tons of stuff to do. Chris thought Tucker would try to standup the whole time, since the train goes kind of slow. Wow, was he wrong!! (But I am not rubbing it in...right!) Tucker said, "ayne" when he saw the train, and could barely contain himself! We got on the train and rode all around the park, we even went through the tunnel. It was the cutest thing to watch. So we will definitely ride it again next time we go to Houston.
Of course, by beach standards, it is not much of a beach! But this was the first time Tucker had ever stepped onto a beach, and he LOVED it! He walked in the waves and threw sticks in the water. We had a beach trip planned to Gulf Shores in July, but with the whole oil spill, we are pretty positive we are not going. So we will just have to come back to Lake Charles to get our beach fix!
I wrote Tucker's name in the sand...the little grooves around his name were his work.
And I got a few pics of him throwing the sticks.
After awhile we got back in the car and headed to Houston. We got to the hospital about 2 hours early. There is a huge zoo right across the street, but we decided 2 hours was not long enough for a zoo trip. So we opted for a train ride. This is all in Hermann Park, which is a huge park with tons of stuff to do. Chris thought Tucker would try to standup the whole time, since the train goes kind of slow. Wow, was he wrong!! (But I am not rubbing it in...right!) Tucker said, "ayne" when he saw the train, and could barely contain himself! We got on the train and rode all around the park, we even went through the tunnel. It was the cutest thing to watch. So we will definitely ride it again next time we go to Houston.
The appointment with anesthesiology was pretty uneventful, except that we had to pass the swings at the park to get to the office!! Tucker screamed for the swings, and we had to promise that we would go back. We went over Tucker's entire medical history, and the doctor was a little shocked that his lungs improved so quickly. We didn't think it was so quick, lol!
The high point was when the doctor asked us if we speak Cajun at home....you could have heard a pin drop! Chris looked at the doc like he was insane! The doctor was obviously from a foreign country, and he was a young resident...so all he probably knew of Louisiana was pictures of crazy Cajuns with their alligators! Which actually is a pretty good description of my father....just not us!!
So then we went to check in at the hotel. We usually stay with Missy, and of course I would have LOVED for Chris to meet that great family and their precious kids! Missy's sister got married that weekend, so they were super busy. She still took time to text me and make sure we were doing okay, though. Her son and daughter were the flower girl and ringbearer, and she said they had a blast at the wedding...although the weekend ended with an ER trip for Samuel and he is still inpatient:( Please send prayers to them, they have been so great to our family!
So anyways, Tucker was very tired from his long day! And when we brought all of the bags into the hotel room, he burst into tears! I guess he thought we were going home! We fought the whining for awhile, and eventually got out to pick up a pizza. We got a little lost, but ended up back at the hotel with our big pizza (hey, we were on vacation, right??). We fed Tucker at 8pm and he fell fast asleep. So Chris and I settled in to watch the season finale of Grey's Anatomy. Oh My Gosh!!! if there was ever anything to take my mind off of Tucker, this was it! Chris is not a Grey's fan, but we both had our hearts racing watching the whole thing! So by the end, we were ready for bed....although Chris kept joking, saying he hoped the hospital did not go into lockdown the next day...not funny!
We got to the hospital the next day...Tucker did amazingly well in the pre-op room. Really amazing, way too professional at this! We had some paperwork problems...for some reason they had the biopsy scheduled but not the lumbar puncture...the LP is super important, and he needed to be put under for it. I told them I was NOT coming back to Houston for an LP, and that Dr K would not want him under again, so figure it out....I told Chris, "Tucker missed his class water day for this!! He is getting this stuff done!" So after about an hour they had all the orders in place. We had already been briefed on the biopsy, but when they described the LP I got kind of queasy...the LP actually took over 1 1/2 hours because they had to get enough fluid...yuck.
Chris and I entertained ourselves with our IPhones (Thank goodness for those!) and by eating both breakfast and lunch. BTW, that hospital has some delicious food! I definitely recommend getting sick while you are in Houston:)
When the doctors came out, they said everything went great, but they wanted him to lay down still for about 5 hours. 5 hours??!! we thought. I texted to many people, "please pray that Tucker sleeps!!" because that was the only way we would get him to lay down. I found out later that many people forwarded on those texts.
So let me just stop here....over the last 4 years, Tucker has been through some "crap" (that's my nice word for it), but we have found many blessings in the weirdest places....meeting certain people in the right place at the right time....having certain things happen exactly the way we needed....that day all I needed was for him to sleep for 5 hours...his procedure ended at 130. At exactly 630, Tucker woke up! And as soon as he woke up, he was saying "out! out!" He was not supposed to walk, he had about a 4 inch cut in his thigh. He was very unsteady, but we could not keep him down! We took him for a walk to the indoor playground on the 10th floor (seriously! an indoor playground, he loved it!), and then a trip to the cafeteria for yet another meal. Chris and I are serious stress eaters, I think we gained 5 pounds each in those 2 days! I always say, "I lost the baby weight in one week....it's the NICU weight I have left to lose!" Ugh, and it's the truth!
So we knew Tucker was completely back to himself when we saw the chips! He jumped out of the stroller and Chris had to catch him! Ugh, Mrs. Mary, if you are reading this, pretend that you don't see the PullUp! We let him hold one as long as we were in the hospital...as soon as we left, we took them away! He did very well with it.
So we left the next morning and drove straight home. We should get the results of all of the tests by the end of July....did I mention the stress eating?? I hope I can fit in the seatbelt for the ride to Houston by the end of July!! Because the next few weeks will be pretty stressful for me, waiting on the results.
I wanted to post a pic that is totally unrelated to Tucker. Last weekend I spent two days at the largest Country Music concert in the South, the Bayou Country Superfest! It was in Tiger Stadium (yay!) and featured Taylor Swift, Keith Urban, Kelly Pickler, Kenny Chesney, Brooks and Dunn, Jason Aldean, and several more! My sister Meagan, her husband Chris (yes, another Chris), and I purchased our tickets last fall, and we have been patiently waiting!
It was great, I love music! And so many of the songs I heard brought me back to my childhood (in the case of Brooks and Dunn) and my teenage and college days...it was a lot of fun. The weather was supposed to be pretty bad, so Meagan told me to pack a poncho. It poured down for about 15 minutes....Chris warned me that he was NOT leaving if it rained, he paid to see Keith Urban, and he planned to stay! I told him I am not a sissy! (which is not really the truth...) and I put on my poncho as well. Well, Meagan is a genius, almost no one else had ponchos! People kept asking us where we got them, as they ran for cover.
So here is a pic of Meagan and Chris....just a little reminder that there is life outside of Tucker...at least every once in a while!!
Thanks for keeping up with this blog, the whole 4 people who read it! It really helps me to get Tucker's story out, and it helps me to remember all of the events in our lives.
Thursday, April 29, 2010
Unexpected Trip
So when I titled the last post "Busy Week," I must have had a psychic moment:) We had several appointments lined up this week, but yesterday we made an unexpected trip to Houston.
We had an appointment with the mito doc in March. At this appointment we discussed scheduling a muscle biopsy and lumbar puncture. We thought it would be several months before they put him on the schedule, since they only perform a few per month. So I got a call yesterday from Dr K's nurse, telling us Tucker could be on the biopsy schedule for May 21st, the only catch was that we had to be in Houston the next afternoon to meet the surgeon for a pre-op appointment. I had to decide right then, so I said "ummm...we'll be there!" then I called Chris and told him to come home early and take Thursday off because we were headed to Houston.
We packed up and headed to Aunt Kim's in Lake Charles first. Tucker does very well on car trips, but around the 2 hour mark he gets a little crazy! Luckily Aunt Kim, Uncle David, Morgan, and Grace live about 2 1/2 hours away, so we have stopped there on every Houston trip so far. Tucker knew we were going there, but around Siegen lane we realized we forgot his feeding supplies. These are not something you can just pick up at Wal Mart, so we had to turn around to get them from home. He screamed and pulled his hair on the way home, even though we promised him we would turn right around after we got his stuff! Once we pulled out of the driveway, he was grinning like a JackOLantern, saying "Gogan", which we consider a combination of Grace and Morgan!
We had fun with them, as usual. Chris and I jumped on the trampoline with Tucker and Morgan while Grace had baseball practice. Grace came home and was so excited to play with my new IPhone....until she realized I was so lame, and I have no apps or music! I only use it to call, text, and check facebook, so it was no fun to her at all. This morning we left Lake Charles and made it to Houston pretty quickly. I have only been to Memorial Hermann twice, but I knew much more about it than Chris, so I showed him all around before the appointment.
Tucker had an appointment with the pediatric surgeon who will be performing the muscle biopsy. The doctor wanted to meet Tucker to go over his case, and today was his only free day before May 21st. We showed up early for the appointment, just in case, then we waited over an hour to see the doctor. It was a very crowded room, and the little kids were kind of stir crazy! Some of the highlights included: Tucker rubbing some strange woman's leg before I could catch him (he LOVES legs), Tucker trying to turn the lights off 500 times, then screaming "light op!" when I blocked him, and Tucker and a little girl trying to dig old crackers out of the trash can with the whole room telling them "no!" Tucker spent about 20 minutes listening to Mickey on Chris's Iphone with headphones, but we could not pull out our secret weapon (the laptop with the Mickey DVD) because the kids would have swarmed all over it!
So the actual appointment lasted only about 15 minutes. The resident explained the procedure to us. They will make a 1-2 inch incision, then cut out three pieces of muscle from Tuck's thigh muscle. They will put each piece on a slide, and two slides get sent for different tests, and the third slide gets saved for future testing. Mitochondrial disorder is a new field of study, and there may be new tests available later that don't exist now. So once they send the tissue out, their part is done, and we wait for 6-8 weeks for the results. The neurologists will also perform a lumbar puncture at this time to test Tuck's spinal fluid for many things as well. Tucker will be asleep for all of this, so he will not feel any pain. Once he wakes up he will have pain medicine, and we should go home the next day. Because of all of Tucker's past issues, and his possible mito diagnosis, the anesthesiologists want to meet Tucker before the surgery. So we will be up at the hospital a day early to meet with them. At Memorial Hermann, they use different anesthesia protocol for kids with mito to make them safer while asleep. So even though Tucker has been put to sleep many times, this will be a new experience for Tucker and us.
For the last two trips to Houston, Mom and Gina have rode with us. We all had fun on the road trips, and they are a great help to me. This trip was also very nice, I enjoyed spending time with Tucker and Chris, and letting Chris spend a little time in my medical day-to-day world! After waiting for the doctor for an hour, Chris said he would rather my mom come with me next time, not him! We often joke about how Chris has the "easy" job since he spends 40 hours each week at work while I am at home and on-the-go with Tuck. I think after this trip he appreciates his job even more.
One random story to end the post.....
For those who don't know how Tucker got his name-When we found out I was pregnant, Chris said the baby would be a boy, and his name would be Tucker. I laughed, and I asked "what if it's a girl?" He said it was definitely a boy, but if it was a girl, I could pick the name. But I didn't get any say if it was a boy, his name would be Tucker.
Once he was born, I made nametags and decorations with Tucker's name and put them all over his NICU room. He had tons of monogrammed blankets and keepsakes, letting the whole world know this kid was Tucker Ray! Tucker has had strangers in his life since day one, so we are always introducing him to people. So many people have told us what a great name "Tucker Townsend" is, how it sounds like a baseball name, or a famous name.
When the resident walked in today, he said, "Tucker Townsend-that's a great name!" and he said it a few more times. Chris looked at me, as if to say, "Yes, I am amazing."
So tomorrow Tucker is going back to school (which he loves!), and then we are all going to the eye doctor. This is never fun, so we will see how amazing we all feel by tomorrow evening!
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