It’s been quite slow around here lately. Thank god. No admissions, just some routine follow-ups, school and therapy.
His GI doctor ordered a liver biopsy, and an endoscopy. The liver biopsy was today and the endoscopy is scheduled for March 16th. Both are done outpatient and under general anesthesia. The liver biopsy was pretty quick, but he had to stay in recovery for three hours because of potential bleeding. He was in some pain but slept through most of the recovery time. We are now home, he is taking it easy and he seems pretty comfortable.
Jaxson had to have another blood transfusion early February, and they were finally able to do it outpatient. He normally functions pretty well on the low side, but his counts got significantly low and it started to affect him. He’s had two lab draws since then, and I wasn’t notified of him being low either time- so thats a really good sign that things may be starting to go back to normal. They drew labs today before his biopsy and I was notified that his counts were 11, which is in the normal range. Lately, he would get a blood transfusion and his counts would drop pretty quickly. So since its been a month since his last transfusion, and his counts are remaining stable, i’d say his body is finally healing.
The same day of his transfusion, he had an appointment with an orthopedic surgeon. We’ve noticed when he walks, his tibia (the bone below the knee) kind of bows outward, as well as his foot. It’s more prominent in the left leg, but still slightly noticeable in the right as well. His physical therapist at school recommended being seen for SMO’s which are leg braces that could possibly help get it straightened. I’ve never dealt with this before, so I took her advice and got him seen. Let me just say this doctor was beyond rude. He was literally in the room for maybe a total of three minutes. He wouldn’t even take the time to watch Jaxson walk, and immediately referred us to a neurologist because of his developmental delay & how late he started walking. Maybe he’s right- maybe it is a neurological issue, but there was definitely a better, more kind way to state that. He made it seem like we wasted his time & we should have known this wasn’t an orthopedic concern. So his respite nurse and I left that appointment feeling quite offended. Not because he couldn’t help us, but because of the way we were spoken to & the fact that he barely got to know Jaxson. Neurology couldn’t get us in until April, so it’ll be a couple months until we get those answers.
Insurance absolutely will not cover a multi-listing, or re-listing at another transplant center. I tried Lucile Packard in California, and though they were willing to do anything to make it cheaper (not re evaluating, getting tests done here in AZ instead of there etc.) insurance just wouldn’t budge. I then tried Nebraska, which is another great center, but didn’t get far, as our insurance is not contracted with them. Ugh. I was really hoping for Nebraska, because they have an intestinal rehab clinic, to try and see if a transplant is avoidable and I really wanted to explore that route. I’m going to research more centers (Los Angeles, Boston, Miami, & more) and look at their statistics. I’m not giving up on getting him multi-listed at another center. He’s going on two years being listed, and I will do anything in my power to improve his chances of being called sooner.
We had parent teacher conferences a couple weeks ago- and he’s doing incredibly well. The fact that he has a 4 hour break from TPN helps tremendously, because he doesn’t have to carry his pumps at school. He’s free to walk and do whatever he wants without having to worry about waiting for someone to follow with his backpack. He even walks all the way up to the bus in the mornings, and back in the afternoon. No stroller needed. 🙂 That alone is a big deal considering just a few months ago he had to be carried everywhere. He’s becoming more and more vocal- saying baba, dada, and peppa frequently- and he just started saying mama! Again, something he was not doing just months ago. He had his speech device evaluation a couple weeks ago and did so well with it. His first sentence was “I want to watch cartoons.” The device is a tablet/iPad with a communication software installed. All he has to do is tap buttons on the screen to communicate. It says outloud whatever button he selects, so not only will he be communicating, he will also be hearing a word or phrase over and over which in turn will help him learn. The phrase “I want to watch cartoons” was a series of three buttons. First he pushed I want, that brought up another screen with actions: to play, to watch, to eat, to drink etc. he chose “to watch” which then brought up another screen of things: music videos, cartoons, etc. Its exciting because that was exactly what he wanted to do and for the first time, he told us all on his own. I think it is going to be really good for him and I absolutely cannot wait for him to get it. It will take a couple more months for him to get the device though. Just to get the evaluation set up took three months. I believe this final step will take 2-3 months. In the meantime, pre school is working with PECS (picture exchange communication system) which is the same thing as the tablet but in little square card form. I’m hoping to get him use to it before he gets it, so we don’t have to prompt him to use it. Like with sign language, he knows signs but he won’t do them unless we tell him to. He doesn’t automatically do it as a means of communication. I really think he will adapt well to it, this is a huge thing for him.
And last but not least, we have been working on a t-shirt design & setting up a booster campaign. It will not only bring awareness to Jaxson’s condition, but its a good way for us to raise funds for transplant related expenses. And what better day to launch the campaign on than World Birth Defects Day? So, if you’d like to purchase a shirt, you can do so at: https://www.booster.com/jaxsons-got-guts There is an option to purchase a shirt, donate without a shirt, or both (and either option is greatly appreciated!) This campaign ends March 31st.