When I first started writing on this blog, I used it as a place to write down my feelings, sharing the things that generally went through my head during the mundane hours in the ICU. However, over the last year or so, its evolved into a place to not only share my thoughts, but also to share updates and information about Jackson and his progress. I love that people turn to our page to follow our adventure with Jackson and truly hope you enjoy seeing the day to day happenings in the life our kiddo.
So where are we now?
Jackson’s December was a bit rough. Like a lot of kiddos like Jackson, the winter season is tough – colds and viruses are everywhere and they tend to catch them easier than others. Is this because of the trach? Definitely – Jackson has a direct hole to his airway and lungs that can easily get infected. Is it because of the time he spent in the hospital? Probably – being exposed to so much so young put a lot of stress on his system and he’s still recovering. One of our big questions this month, though, was ‘is it an immune issue’? The answer – we don’t know.
While kiddos with Coffin Siris Syndrome aren’t specifically at risk for lowered immune function, so little is known about CSS that we decided it was worth a check. Well, that coupled with the fact that he has been sick multiple times, had tons of infections, and had pneumonia… in July. We were lucky to get in with an awesome immunologist here at TCH very quickly and we’ll be running a few tests via blood work to check out function. Some of the tests will come back quickly, but we should know in a few weeks if we ether gained a new friend – also known as a new specialist – or if we can add ‘immune system function’ to Jackson’s win column and not worry about that one in the future.
Unfortunately, that information really wouldn’t have made our December any easier. Jackson started out the month generally not feeling well – he was admitted to the hospital for increased heart rates, work of breathing, and just general monitoring for about 72 hours. He seemed to be doing well when we left, but apparently that was just a warm up for what was to come next. Over the next two weeks, Jackson was the sickest we have seen him in a long time. Dehydration, fever, lethargy – you name it, he had it. He was requiring more oxygen than ever before at home and gave us some pretty good scares with coughing fits that just wouldn’t resolve. Thankfully, we have amazing nurses and we were able to avoid another inpatient stay. Since the day after Christmas (our last ER trip) he’s been doing great!
Since then, it’s been business as usual for Jackson which, in our world, means appointments. He’s doing great with PT, making huge strides in his unassisted sitting, and even ‘balancing’ a bit on his own for a second or two!
Jackson has seen a few of his specialists, too, including his ENT who made a big change for us regarding his trach. No, it’s not coming out (nor will it be anytime soon and we’re okay with that – the little man has too many upcoming procedures that the trach will be helpful for, plus it’s flu season and we don’t want to risk needing intubation or oxygen support) but we were given the ‘go ahead’ to start working on a Passy Muir valve without a hole! Jackson was discharged from the hospital with a ‘drilled’ PMV, meaning that while it required him to do a little more work than usual and push SOME air through his nose and mouth, he could still cheat and let some air escape through his trach. His new valve forces him to only breathe out through his nose and mouth, allowing him to get used to a more ‘typical’ airflow pattern and even make noise!
Speaking of noise, someone is in their final steps of the cochlear implant process – hearing aids! Yesterday, Jackson got his own set of bilateral hearing aids to try out for a few weeks. We aren’t expecting him to get a great deal of benefit from them due to his anatomy, but the aids are part of the overall insurance workup and are actually great practice for the ear piece that will be worn with his cochlears. So far, Jackson seems like he MAY be able to hear some sound, but we’re not quite sure so we’re going to have to wait and see!
The next few weeks are going to be busy for Jackson – between his appointments, therapies, and upcoming cath, January is going to be a busy month. Plus, we have a big announcement coming up soon that will make things even busier in the next few weeks – can’t wait to share with everyone!
Until then, don’t forget to get your flu shot and try to stay healthy during this awful flu season!