Thursday, June 9, 2016

Megatron Update: Medical Stuff

Despite Megatron being healthier than he's ever been, things have been busy lately in terms of his medical care and development and I haven't really talked about that much on the blog.

Last month we had his annual exam in Pittsburgh with his transplant team.  All but one of the surgeons and even our usual nurse coordinator were all out at a conference (which they didn't find out about until after we made all of our plans, including The Pilot requesting vacation time). But we still got to see some familiar faces and there were all super excited to see how big Elias has gotten and just how well he's been doing.  His lab work has been really stable, even as they lowered his immunosuppressant.  It's now just a hair over "undetectable."  Normally they like to have the level a little higher but his liver and kidneys are happy and that is the priority.  His EBV level has been creeping up again (which is always a concern because if left untreated, it can lead to a type of cancer) but as soon as they lowered his immunosuppressant, the EBV came back down.  Up until now, it's always seemed to be a little bit of calculated risk.  Keep the immunosuppressant as low as possible without seeing the liver numbers go up.   But now, they have something really exciting (for families like ours anyways) to help determine risk.

Right after the transplant, we enrolled Megatron in a research study that one of his surgeons was doing.The goal was to create a blood test that would determine the "level" of a post transplant patient's immune system.  It essentially tells them which patients are at higher risk for rejection.  So Megatron was part of that research and recently, the test has been approved for use!  So when we were in Pittsburgh, they drew what looked like a gallon of blood from him.  Some for the various research studies, some more his routine monthly lab work, some for annual lab work and then some for the new test.  A few days after we came home, we got the results of the new test.  Megatron is now considered low risk for rejection and that means he can continue to stay on the low dose of immunosuppressant as long as his liver stays happy.  They also ran a more detailed test on his kidney function and that looked great too.  His immunosuppressant is very hard on the kidneys (as in many patients eventually need a kidney transplant) but his seem to me trucking along just like his liver.  Nothing but great news!

The nurse practitioner commended The Pilot and I for following the post-transplant "rules" as well as taking advantage of the resources available to us to make sure Megatron is catching up (speech, occupational and physical therapy, nutrition, etc.)
was doing.
Speaking of nutrition, it's been over a year since we met with a nutritionist about Megatron's diet.  When we first did the top-8 elimination diet, his local GI doctor wanted to make sure we were still meeting all of his nutritional needs.  There was certainly a learning curve but we were managing.  Megatron has grown A LOT since then so it was time to take a look at what he's been eating and compare it to his current nutritional needs.  I kept a food diary for a week and gave it to the GI clinic.  I was so excited when the nutritionist called me and she was excited with how well he's eating.  We are RIGHT on target with meeting all of his nutritional needs.  Even with protein!  Even though we had to abandon a vegetarian diet for him when he was diagnosed with eosinophilic gastroenteritis, he's still only getting animal meat a handful of times over the course of a couple weeks.  But lentils and quinoa are frequent staples in our house and those provide lots of protein and iron so we are meeting those needs through plant-based foods.  The nutritionist was really impressed at the variety of foods we are offering and the fact that Megatron eats really really well both in terms of quantity and the food itself.  He's not all that picky and there really aren't any vegetables that kid won't eat.  She said it was refreshing to see he hardly eats any processed food.  That phone call really made all of the hard work worth it.  Because as a type-A mom, I'm always worried that he's eating enough of the right foods.  I mean, it's obvious that something is working because he's growing but with such a restricted diet, it's hard to know if we really are feeding him what's best.  But she assured me that we are doing great.

We also got another pat on the back from our local school district.  Our state's early intervention program will end next month when he turns 3 (3!!!! Start the crying now!) so the school district is now preparing to take over.  They recently did a multi-step evaluation process with us and we just had our meeting to discuss the results.  Basically they did find him to have a speech delay and when the school year starts in the fall, they will offer him a weekly speech therapy session at our home elementary school.  Which is great because it will get him used to the school and give us a chance to get to know the school administrators and therapist so when kindergarten rolls around, the transition will be easier.  The great news about the whole evaluation process was that they do not feel his delays will effect his ability to learn in a traditional classroom and he doesn't need their special needs preschool.  While he did score below average in a few areas (specifically expressive language/speech and some gross motor skills), there is no reason to believe he won't be caught up by kindergarten.  We weren't particularly worried about this, but our goal has always been to just take advantage of the resources available to us to help him catch up.  And honestly, this kid loves going to the hospital's outpatient facilities for things like labs and speech and then going to the preschool for the evaluation.  He is really cooperative when it comes to interacting with adults (other than with family, with whom he can be a typical pain in the @$$ toddler) and they always make it fun. Plus, he doesn't know any different.  The school psychologist mentioned it a couple times that he was very sweet and empathetic, a trait that many toddlers simply haven't learned yet.  Another thing that didn't exactly surprise us but was nice to hear from a professional, was that some of his receptive language and cognitive skills scored him into the 4-year-old category.  Meaning our little man is very smart, he just has a hard time getting the words out of his mouth to express those smarts.

I can't even explain how good that feels.  Especially since before transplant, there was a real fear that the toxins building up in his body because his liver wasn't working were starting to effect his brain, which is very common in patients in liver failure.  It was a real enough fear that Megatron has had a head CT and MRI.  But based on what the school evaluation told us, little dude is smart and his body is just taking it's time to repair itself and catch up from his traumatic first year of life.  They also pointed out that we have done everything right when it comes to helping him catch up but also making sure we are exposing him to books and talking about letters and numbers all the time. So even though most days it feel like I have no idea what I'm doing, the professionals seem to think I'm doing just fine by him. Talk about a sigh of relief!

Megatron has still be getting some somewhat intermittent private speech therapy as well as occupational therapy through the early intervention program.  The progress has been somewhat slow but it's there.  And it's been an absolute blast interacting with him now that he's speaking more and more.  Don't get me wrong, there are lots of moments when I have no clue what he's trying to say but I'm usually his translator and can figure out what he's talking about.  He's also getting more and more confident when it comes to navigating the world.  He's slowly figuring out how to run and climb.  He's just doing everything in his own time.  I sometimes get a little anxious/impatient because as his mom, I naturally want him to fit in and be able to keep up with kids his own age but I also don't want to rush him.  I missed out on that sweet and fast newborn/baby stage because he was so sick so I'm trying to enjoy this time that he's still little and not quite up to full speed like other kids his age.  I don't want to miss a thing because I already missed out on too much!

1 comment:

  1. great job, Mom! Glad to hear he is doing so well!