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.

Yesterday...Aside from the Appointment

So yesterday was bad...we are all agreed on that.

But the weird thing about us....we actually had two very important visit to make in Houston before we left. We know two kiddos in the hospital there, one 3 year old boy Samuel, and one year-old baby girl Gaby. So we decided to still make both visits, and I am so glad we did.

I found this quote years ago, and I know am mutilating it, but here goes: "experiencing suffering is like learning a foreign language...it allows you the opportunity to talk to people you otherwise would have no access to, and to discuss your lives in a common language."

So that is what yesterday afternoon did for me, and my mom, too....as for Chris...well he was in his own world, poor Daddy, but Tucker sure did enjoy lots of hugs from him.

Samuel was born at 33 weeks gestation (I think I'm right about that) and has had many medical problems since then. He was diagnosed with mito in January 2009 while he was literally fighting for his life on ECMO-they gave him a 10% survival rate at that point. I knew his mom through the March of Dimes; although obviously Samuel's medical issues were not all related to prematurity, at that time that is all I thought I shared in common with her.

Tucker and Samuel's mito affects them in completely different ways, which shows how very hard it is to compare any two mito kids.

But still, Missy has been an absolute lifesaver to me over the past few months.

Some direct quotes from her last night:

"All forms of mitochondrial disease are a 'death sentence'. Some forms outlive others, but there is no hard and fast rule. Some kids with a mito complex disease will live to be 40 and others won't turn 1. Even in the same family, there are no clear cut paths. It depends on what 'systems' are affected. So, yes, it may end his life earlier than we would like, BUT, it may not be until he is 75 years old with grandkids. Plus, they are coming up with treatments right now and in 10 years, depletion (what Tucker has) may have a cure. That's why mito sucks, you get to live life without a percentage to hope to beat and always waiting for the other shoe to drop that delivers devastating news."

"But with time, you will see that you are all still living and Tucker has a life to live and a story to tell. The grief cycle never ends though....you keep spinning circles. You think you have a handle on things only to fall apart again. You have to remind yourself that you have one of the best doctors in the world fighting for him and he 'fits' somewhere. For me, that restores some of the hope that is lost in my kids diagnosis."

So wow, you can see why seeing her and talking to her really helped me!!

We went up to Samuel's hospital room, and Tucker immediately freaked out:( He refused to go in, even though we told him we were only visiting, not going to put him in the bed!! Chris stood in the hall with him until he was ready to come in with us. Samuel was still asleep from anesthesia (he had a procedure yesterday), but when Tucker started screaming he woke up! Finally we coaxed him inside with the promise that he could play with any of Samuel's toys:) He was much more interested in all of Samuel's medical paraphenalia, though, in true Tucker style.

Once he got really comfortable, he went and closed the door to the room....which is Tucker's way of saying "okay, I like this, let's stay awhile." So we were trapped, haha! He climbed up on the bed next to Samuel, and patted his head, and said "night night baby." I told him that Samuel wanted to wake up, and that Samuel is NOT a baby, haha, he is probably bigger than Tucker! So then Tucker climbed down and inspected the toys. He chose a Buzz Lightyear notebook, he is really into notebooks and paper lately.

After our visit Missy directed us down the road to the other children's hospital to visit Gaby. We rode the metro train to get there, which of course Tucker loved! It was a super short trip, though, because it was only one stop away.

We got out at that stop and Mom and I went into visit Gaby. Tucker was too young to visit her, so Chris took him for a walk for about 20 minutes. We were all exhausted so we agreed to keep the visit short. We met Gaby and her parents last fall. Gaby was born in June 2009 at 24 weeks gestation, and she was at Woman's Hospital, the same NICU as Tucker. We met her parents to discuss Gaby's getting a trach. Her parents wanted to see an actual trach, and see all that came with it, so of course we obliged. We would have loved to have this opportunity ourselves 4 years ago....there were several moms that I talked to lots over the internet, but seeing a trach kiddo in person would have been great. So anyways, we talked to them for a long time last fall, and about a month later Gaby got her trach. Her mom became a trach pro very quickly, and got used to everything as well as she could. But in April 2010, Gaby got transferred to Houston because her lungs were so bad that they said she needed a transplant. She was way too small for that, though, so they waited for months. By the time she was big enough, her lungs had gotten strong enough to not need the transplant.

So I hadn't seen this mom since last fall, and I knew she had been in Houston for months with no one to help her (her husband went there every weekend, but of course he has to work during the week). It was their last day in Houston, because today they got an air flight back to Baton Rouge, they will be at Our Lady of the Lake for a few days or weeks, then Gaby will finally get to go home!! :):) So it was so nice to get to see Gaby, complete with trach and vent, and of course it was nice for Jasmine (her mom) to see Tucker jabbering away and running around! Jasmine even had a bunch of lunch coupons, so she treated us to a cafeteria lunch:) She said she rarely leaves her daughter's side, so it was nice for her to get "away" for a while.

This family has quite a story....I hope she starts a blog if she hasn't yet....there was actually a point where they unhooked Gaby and told her parents to say their good byes....only to have her fight to wake back up after much time had passed....and her mom said "once she died and came back, she was a totally different baby...much happier and more of a fighter." I tell you, no matter how many of these stories I hear, they always amaze me.

Talking to Jasmine also was like a wake-up call of how lucky we are. We really did have some of the best trach care available, I think. Both Woman's Hospital and OLOL treated us so well and took our every concern very seriously...Tucker never had an infection in either of these places, which is pretty much unheard of for a trach kiddo.

So we finally had to say goodbye to Jasmine, after making her promise to call me with any questions about OLOL, (my cousin is the charge nurse in the PICU there, I told her to let them all know that!! haha) home nursing, or anything else. We hopped back on the train for a too short ride, then headed home in the storming rain.....allowing yesterday's news to sink in.

I will very likely update tonight with the medical explanation of Tucker's mitochondrial disorder....just so everyone can print it out as a reference, myself included. I will also touch on the silver linings I found yesterday, which actually are many.

This morning I got a call from the RN at Dr K's clinic. She told me they didn't get enough bloodwork from Tucker yesterday. They only took 5 vials, but they forgot 5 more, along with the orders!!! So we have to go back ASAP, which will likely be Friday with Mrs. Mia and Mr. Ricky.

The "funny" thing...yesterday my mom and Missy sat outside and waited while we got Tucker's blood drawn....Mom remarked that it was way too quick, did they make a mistake?? I said "no, the blood draw lady was just very good."

Ugh......when Mom says things like that, she is ALMOST ALWAYS right!! Why did that remark not click in my head??? So we have to go back.....no ifs, ands, or buts....because the 5 things they did not test for are of course the most important tests that cannot be put off.

So, hey, at least I will see Missy and Samuel again, (and maybe even her husband Ben and daughter Lauren) and maybe it won't be storming and Tucker will be able to play in the huge Hermann Park and ride the little train again:)

"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.