High Blood Sugar

Yesterday afternoon Tucker's pediatrician called me. When I saw the number on the caller ID I assumed it was the peds psyhchology department calling to confirm our appointment for today. I was surprised to hear the voice of the ped's nurse. And yes, we are on a first-name basis (sad, I know!), but she still rarely calls me. She explained that Tucker's labs in Houston showed that he has high blood sugar (224, normal is under 120 I think, and 200 and above indicates Diabetes). She said we needed to come in and take care of it. I explained that Tucker has school and therapy on Wednesday, and we're pretty much booked up this week, so could he come in next week? She said no, that we have to come in as soon as possible! So I asked her what a high blood sugar reading could mean exactly? She was taken aback by that question, I think, and she said it could mean he has diabetes. I know a lot about medical conditions, but not really diabetes, and I wasn't sure if high blood sugar or low blood sugar indicated diabetes! I looked at a few diabetes websites and realized that this could definitely be associated with his mito. I don't think it's something he has had for too long, though, because I am fairly sure that he has this tested every few months and this is the first high reading. It could be the start of a new problem, or the reading could have just been a fluke. So today Mom and I took Tucker to the ped's office. They took 4 vials of blood and another urine sample. Wow was that unpleasant!! Last Tuesday Tucker sat so quietly to give blood, then on Friday when we went back he totally flipped. Today was at a different lab, but he lost it when he saw the chair and the needles. I had to lay on top of him and hold down his lower body and head, and three lab people held his arm so they could get the 4 vials off of one spot and not have to re-stick him. He tried to claw my face off, but luckily I had cut his nails last night! One of the lab techs remarked, "wow, you're a great mom to hold him down for us, we need more moms like you,"....well I didn't really take that as a compliment! I'm sure Tucker wished I was not holding him down! He also kicked the nurse when she laid him down to get his urine sample. Very unpleasant for all of us! The urine came back with glucose in it, which is not a good sign; the bloodwork is not back yet, but I should hear something by tomorrow morning. If the tests are still high then we will go to see the Endicronologist, likely tomorrow. In my last blog post I mentioned that we keep adding specialists instead of losing them....well we may be adding Endo to the list....not exactly what I had in mind! I don't know much about diabetes, but I know that options to control it include injections, diet, and checking blood sugars. Because Tucker is tube-fed, the Endo could make the decision to put Tucker on continuous feeds to regulate his blood sugar. I would rather not go with this option for the sake of mobility and feeding issues, but I guess we will cross that bridge when we get there. In other news, my sister Jessica is going into the hospital tomorrow for a kidney surgery. It may be considered just a "procedure", I don't know all of the details. She has large kidney stones, too large to pass, so they are going in to remove them tomorrow. I will be praying for her, please everyone else pray for her, too! I called her tonight, she was in bed watching the Cooking Channel (her favorite!) and we all told her good luck. Tucker even told her "hi" on the phone, which made her so happy:) Tucker has 6 days left until he gets on the school bus and goes off to preschool. We are very excited, and also nervous. I am meeting with the school nurse Tuesday afternoon to discuss everything, hopefully we are not discussing diabetes.

Conversation with Dr. K

I think I am ready to explain the entire Mito appointment, trying to repeat the conversation with Dr. K as closely as possible. Of course you won't be able to hear my heart actually fall out of my body and hit the ground....but you can imagine it. I have had a lot of conversations with doctors in Tucker's 4 years....but I have never actually cried at one. This is not something that I am bragging about, it's just the truth. I think with all we have been through, my first reaction is always "Okay, so what do we do?" or "Tell me the plan, let's get started." So my reaction shows two things: 1. the level of sadness and emotion I felt at this appointment, 2. the empathy and compassion Dr K offered us. Dr. K walked in and took Tucker to get his Mito Mike, the stuffed turtle. She came back and sat down with us. She said that she could see that Tucker's muscle tissue was abnormal as soon as she had it under the microscope. This could point to a muscular problem or a mito problem, but the main point is that it was obvious. So she cut up the muscle fibers and looked at the cells. The first thing she noticed is that Tucker's mitochondria look funny. The mitochondria usually have squiggly DNA and Tucker's DNA float around in circles. Tucker also has double the mitochondria in each cell than a normal person. We thought maybe that was okay, like his body was making up for his mito looking funny by producing more of them...Dr K said no, his body is working way too hard to make the same amount of mito. So the next step is to test the 5 Complexes in the Energy chain. A regular person takes in sugars (food) and the body takes it through a chain to make energy. A person with mito could have a problem in any part of the chain. Tucker actually had increased enzymes in most of the complexes, and he had 87% of normal in one of them. For example, a person with a complex II deficiency might only have 15% of enzymes at the Complex II part. At Complex V Tucker had almost 400%, which is obviously way too much. So up to this point, I thought it wasn't THAT bad....so his mito is not doing its job, but his body figured out some way to make up for that, by making tons more. So then Dr K said she actually "counts" the mito DNA (I'm sure that's not what she really said), because the mitoDNA tells every new cell how its mito should work. Tucker's mitoDNA is only 56% of what it should be. This means that as each new cell is formed, the mitoDNA is copied wrong. In theory, Tucker started out with each mitochondrion in his body having 100% DNA, and over time it copies worse and worse, making new cells function worse. As time goes on, the mitoDNA continues to deplete, and things get more messed up. This is the point where I cried and asked "you mean he's going to get worse?" She said "yes, that's exactly what this means, but I can't tell you how long that will take or how it will happen." Technically a person with 50% or less mitoDNA has a Depletion Syndrome, so Tucker does not meet the actual criteria, but Dr K really believes that if we were to re-test Tucker in a few years, he would have less than 50%. I know that I typed most of this information in last week, but I think as time goes on the conversation and the information gets more real. I have noticed many things this week with Tucker....things that I have been blaming on his prematurity, things that I have been dismissing as "quirks", but they now clearly relate to his mito....each one of these symptoms is like a kick to the stomach, a knife in the heart, making it harder to breathe.... I have suspected for some time that Tucker has autonomic problems, which are a whole other ball of wax that comes with mitochondrial dysfunction. This explains so many of his issues, like not sweating even in extreme heat, extreme light sensitivity (Tucker screams "light off" any time a light is on!), and some other sensory things. I do not really know how to deal with these emotions or the feeling of anticipation of the worst....Chris usually calls me the pessimist, but really I think I have always been the realist. And now I am too scared to be the realist, I don't want to deal with this new reality. I don't have the fight or energy in me that I need....that Tucker needs. Later this week we should receive a packet of materials from Dr K's office, it will have a list of vitamins and/or meds he should start to boost mitochondria function (Tucker already takes 7 meds each day, and I know that there are many other kids out there on many more), and every time we add meds to the list...it is again a new reality and a reminder that none of these meds are ever going away. We also have to schedule an echo for Tucker' heart with the cardiologist...the ONE specialist we actually ever got discharged from! When you leave the NICU, you have appointments with a million specialists, and over time, you get discharged and cross them off the list....except not Tucker. 8 specialists still follow him, and we actually add more each year instead of taking them away....so to add the cardiologist back is completely necessary but also a big let-down for me. I used to look at Tucker's prematurity and NICU stay as a "wake up" call, as a reason for us to cherish every moment and advancement with Tucker, that we were somehow luckier than other families because we truly appreciated every second with Tucker and every milestone we thought he would never reach...well now I feel like we are still very appreciative of every moment, and we did not need to add another diagnosis to just really cement our feelings that every moment is precious, and that we are not guaranteed anything in this life, not even things that most people take for granted. I am kind of sick of wake up calls and reminders at this point. Thanks everyone for reading as I adjust to this new reality...I have a feeling it will take awhile.

Busy Weekend

I think "Busy Weekend" should be the title for almost all of our weekends! This summer has been crazy, we keep grabbing every opportunity for Tucker to swim and have fun, since now he can get wet:) Well Friday was not a "fun" day, we made the trip to Houston and back in one day. Mrs. Mia and Mr. Ricky drove us, so it was nice to spend time with them and have a few stops along the way. But Tucker was NOT happy to be in his carseat that long! He slept for the trip there, but on the way back he was wide awake. He talks a lot now, but about 70% of the time we don't understand him! So he was screaming "hotoa, hotoa" for a long time, and we all laughed, guessing what he was saying....over halfway home, I realized he was crying for a hotel! He wanted to stop and get out, poor baby. I told him "we're not going to a hotel, we are going home." He was not pleased. We also hit roadwork twice on the way home, he kept screaming "go! go!" and "get out truck!". For those of you who don't know, Tucker has NEVER asked to get out of a truck before, haha! So we knew he was tired of traveling. The reason for two trips in one week: a screw-up at the lab. They did not get the orders from me on Tuesday, but in my defense-they did not ask me for the orders on Tuesday! So we went to admitting on Friday, and they informed me that the lab was likely closed....I said "okay, we'll go to the ER. We are not coming back another day!". So it turns out the lab was still open, but we had to wait awhile for someone to be called upfront for us. Tucker was pretty happy to be there, but once Chris and I took him to the back, he freaked out! The lab people had to call around to see if they had any of the blood from Tuesday...apparently not! On Tuesday they took 5 vials, so we were hoping they would only take the other 4 they needed....but the guy re-took all 9 vials, along with a urine test....which brought out Tucker's best friend, the "pee bag." Yes, it is pretty gross! On Tuesday the blood draw was super easy and quick, but since that blood was nowhere to be found....of course the stick on Friday was rough. The blood came out so slowly that the guy asked us if Tucker had a clotting disorder. Um....no, unless there is something going on that I've never heard of. Tucker cried big tears and screamed "ow" the whole time, so Chris promised him a new toy and a bag of chips afterwards. Missy met us in the lab (her son Samuel is still inpatient) and took us up to Samuel's room. The lab guy didn't have a urine collection kit, so Missy got one from one of the nurses upstairs. Chris and I attached that to Tucker, and he played with Samuel's toys for awhile...Samuel was too tired to get out of bed. After awhile we collected Tucker's urine, which was a task in itself! Then Chris called the lab guy, and met him out in the hall to give it to him. The guy had to call us back to let us know if it was enough, luckily it was! We said our good-byes, then we headed home. We stopped at Red Lobster for dinner...the one in Baton Rouge closed years ago, so it was a treat to eat there! It really was yummy, although Tucker did not appreciate it one bit! He did like looking at the live lobsters, though:) The Red Lobster was right next to a ToysRUs, so we took Tucker over to stretch his legs and pick out a prize. Chris kept disappearing and coming back with 3 or 4 toys at a time!! Mrs. Mia and I told him "it is not Christmas!", but Chris can not help himself! This is why I do the Christmas shopping, haha:) Chris has such a big heart....he would buy out the whole store if we let him. We ended up with two toys; we bought one and Mrs. Mia bought the other, and we left the store. We got home around midnight. Saturday was my brother Dylan's 18th birthday. Our family waited for a little brother for a long time, and I will never forget the day Dylan was born! I was 8 years old, and we didn't know if the baby was going to be a boy or girl. My Daddy came out to a full waiting room and announced "It's a Boy!" and no one believed him! My Aunt Wendy asked to see him personally to confirm, haha! That really was one of the best days in our family's collective history. We celebrated Dylan's birthday at Maw Maw and Paw Paw's house. Morgan and Grace had spent the week there, and it was time for them to go home. Tucker played with his cousins, he always loves that! On Saturday night my mom took me to see the Baton Rouge Little Theater's production of the Sound of Music. I had been wanting to go all summer, but I was always busy! So we ate at Zea's (yummy!!) and then saw the show. It was great, and I will be singing the songs in my head for awhile:) Chris stayed home with Tucker, and Justin and Jackie came over to watch horror films with them....yes I am serious, but luckily Tucker did not watch the movies, he just made huge messes in the kitchen while the movies were on. So after spending the evening with Tucker, here are Jackie's and Justin's thoughts: Jackie: "Tucker is like a little tornado." Justin: "It must be hard to keep things cleaned with him around." Yes, it is! That is why sometimes the house looks like it does....some days I just pretty much give up! On Sunday Brad and Sarah's friend Kyle took us all out on his boat. Tucker was very excited to go, but he was not excited that we made several stops on the way. He cried at WalMart, the gas station, and the Ice place (because no, we could not get ice at the gas station, it was too expensive), but he grinned from ear to ear as soon as he was sitting on the boat. We rode around Blind River, I don't know the area very well, but we spent several hours there. Kyle drove us to the Sand Bar, which is a shallow area where even I could touch. We got out there and floated around, and once again, Tucker amazed both Chris and me with his swimming! He just floated all around with his little floaties, kicking so hard like he was actually going somewhere:) He did not like it when Chris or I would try to pull him around and carry him. We got back on the boat and rode away, but then we passed my Uncle Joey and Aunt Susan in their boat, with Gina, Addi, and Molli on board. So they turned the boat around and we all went back to the sand bar to swim with them. I told Tucker we could swim with Molli, and he jumped up, then said "Mohi, pool." He calls any water a pool! I told him it is a lake, but he still called it that. We all swam for a little while, but then we were ready to call it a day. Being out in the heat all day was pretty exhausting, and we all got kind of sunburnt. Tucker rarely shows sun on his skin...as pale as he is, you think he would burn easily. Of course we put sunscreen on him! But I also put sunscreen on us, and the sun just comes through. With him, it's like his skin literally can not hold pigment, we have always joked that he is albino, but yesterday for once his cheeks were a little red. When we got home I put Aloe gel on myself and Chris, so Tucker requested "lotion" and put his arms out for me to apply it. Then he put his face up to me, so I put the aloe on his cheeks....about 10 times later, I finally told him it was over! So after this weekend I have decided Tucker needs more rest! The new issue of Complex Child Magazine came out today, and as timing would have it....this month's edition is about Mito, just days after Tucker was diagnosed. So one of the articles is all about Mito kids seeming to be okay, then getting run down and having something minor set them way back.....well, hmmm, that is NOT something we want to happen! We really do run on all cylinders, almost too much for any kid, let alone a kid with energy problems. I think Chris and I just want Tucker to experience so much, and he just loves so many activities, so we never say "no" to any ideas. Our fall calendar is already jam-packed, but luckily many of those activities are "adult" activities, so maybe Tucker can spend some quiet time with his baby-sitters:) Tucker is going to be attending school 8 hours on the weekdays, and I'm sure that will be enough activities for him. My mom told me the other night that Tucker has experienced more in his 4 years than any of her kids did by age 10....and he spent the first 9 months of his life in the hospital, and the next 3 years on a vent!! So I guess we could dial it down a bit, it would do us all some good:)