Thank god the month is OVER

I've decided I'm VERY happy July is over tonight. Even though it's a nice warm summer month with our anniversary and my birthday, this time around it's been much harder. Counting the days, Riley has been in the hospital 10 days this month alone, 1/3 of the month. Whether it was for scheduled testing (at children's), unexpected trip to the VC ER and doernbecher's, and another unexpected trip to Swedish for additional testing. UGH. I was very happy to end the month with seeing our PT and a feeding therapist, to give me some extra hope and encouragement. But I will back up and fill those in who don't already know the latest, that once again has happened all too quickly.

Not even a week after our follow up with Vlcek on the 10th, Riley started to show some struggle swallowing his baby food. At first it was hit and miss, and within just a few days, he couldn't get much of anything down and it would just start to pile up in his cheeks and eventually fall back out. At that point we stopped baby foods and kept him purely on formula, which at the time he seemed totally fine with. By the end of the week not only had we grown conserned with that, but also his tremors and irritability has increased significantly, it's like we could never keep him comfy and just moving him sent him into tears.

We called the on call neuro that Sunday evening and he had us up Riley's new antiseizure med to the full dose and contact Vlcek's office in the morning. Didn't take much bugging from me that Monday morning before one of Vlcek's colleges (he's out Mondays) asked him to go into Swedish to repeat the 24hr EEG. Another hospital trip I scrambled to pack for and got there with Chris by early afternoon. Thankfully the EEG still proved no IS or seizure activity, despite his constant tremors. There was one non harmful seizure that registered but it didn't affect him cognigtaively or show physically I guess. So that's awesome, and Vlcek decided to go ahead and cut his Sabril out of the picture at that point and shave a few weeks of ACTH off the tapering schedule. He's now on 20units, for another week and half, and then 10units for 2 weeks, and he's DONE. At that point we will need another EEG to make sure again no seizures of any kind, are coming back.

However Vlcek was very concerned with his swallowing issue, so back to the hospital we went for Riley to have a swallow study the next day. Unfortunately even though he was getting his formula down, it wasn't all going where it should. He was aspirating a significant amount, along with some of it traveling up into his nasal cavity, and coming back down later. That has led us to his NG feeding tube :-( I know he misses the comfort (let alone eating on his own) of his bottle. The hope is that all the irritability from his meds has created the swallow struggle, along with the tremors (possible physical irritabilty), and sudden and VERY lack of any muscle and control. I'm talking like it seems like he's never done any PT, and he had more strength in his head and neck the day he was born, than he has now.

So it's more waiting. I get the waiting, I've grown very (or way more than I was) patient through this whole journey. You can't always have the right answers all the time, we just want to move forward and help our monkey somehow. So even though it wasn't a happy happy hospital trip last week, we got answers and moved in a helpful direction. No seizures, get the meds done faster. He does have a safety issue eating, so temporary feeding tube, and hope it's the meds fault and can get back to normal soon.

In the midst of the current waiting period, we are slowly starting some genetic testing. Sent in his saliva kit today for testing and should be hearing soon on insurance coverage to have his blood drawn as well for testing. Will start working with Encompass again this coming month to keep Riley comfy, keeping his brain connected to his muscles in small ways, and keeping his brain aware his mouth connects to his stomach. That way when the tube does come out, he doesn't look at a bottle and have no clue what to do with it. ACTH will be done as of the 27th, and he will have his repeat MRI on the 29th, to make sure the last abnormalities where connected with the Sabril he was on for 3 months. In that time frame we should be looking at his repeat EEG and swallow study. Hope is that as ACTH goes down and away, controlled movement and swallowing starts to come back, and tremors/irritabilty start to decrease. If not so much, we will have to consider him going to a direct GI feeding tube, with the unknown of how long of a situation this will be. If he is still tremoring like he is now, we have to look into neuromuscular disorders where that is a symptom. 

I feel like he did a 180 when the ACTH started in early June. He had been making good PT progress and his IS was controlled with Sabril, just wasn't gone, why we needed ACTH. And it did it's job, just coming with way more baggage than any of us could imagine. Fingers crossed all his new current struggles are tied to that, and our true little monkey will start poking his head up again here real soon.