Finally home and almost back to normal

I am having a hard time thinking straight since I now have the full blown cold that has been lingering and making rounds in this house since the beginning of school, back on August 19th. So forgive me if I may miss important facts or simply sound a little out of it.

After Monday’s battle of once again stopping doctors from experimenting on our son trying to fix his breath holding episodes, which we all know cannot be fixed, things finally took a turn for the better by Monday afternoon. We insisted that instead of yet another miserable attempt of holding the kid down to place an IV line to give the second dose of antibiotics, we went with an IM (intra-muscular) injection instead so that we had the best chance at preventing another breath holding event. With Wyatt in our lap and one nurse with a needle in hand on each side, and another person standing in front of him playing Signing Time on the laptop, it was a quick one, two, three, poke, and done. He cried but didn’t hold his breath and just gave a mean face when all was said and done. Neurology was pleased that there was no more seizure activity visible on the EEG but wanted to keep it running to now get a good baseline since Wyatt was starting to act like himself again. Although we were second guessing that approach, we ended up agreeing, under the condition that “if it happens to come off then it stays off”, just to have a good comparison of sick vs. normal crazy Wyatt self. However, once Wyatt totally returned to his normal self and started itching his head, we noticed skin irritation underneath several of the leads. The nurse of course had to first tell the ICU doctor before she could do anything about it. Well, not us, we don’t need a doctor’s order to make decisions so that thing came off before they even had time to think about it and then we were mad at ourselves for pushing the envelope when we instinctively should have known better than to leave that stupid EEG on that long. Well, the blisters will heal but it’s not pretty. Tuesday morning Neurology came in for another chat and seemed a bit more at ease. Wyatt being back to his crazy two year old self, he performed well when asked to show off his developmental skills which are all on task. The Neurologist then said he had spoken with another neurologist up in Chicago who is familiar with the EEGs done on their CCHS patients and she reassured him that it was a normal CCHS thing and as scary as the data and images look, they are just part of the deal. While he still stated his curiosity about wanting to do an arterial blood pressure, he also allowed for a good discussion and accepted our viewpoint. In our book, that’s what makes a good doctor whom we can work with. One who is willing to research and learn about CCHS but also accepts it when we step on the brakes. So the plan is to just do a follow-up appointment with Neurology in 2-3 weeks so that he has time to review Wyatt’s record regarding old EEGs and MRIs and we can then discuss when to move forward with a repeat MRI. Since Wyatt does have an underlying trach infection at this time, we cannot be sure whether the seizure activity stopped because of the start of antibiotics or because of the seizure medication Keppra. Therefore, the plan is to continue the Keppra daily until we do a repeat EEG in about 6 months. Upon news of the second blood work coming back negative on Tuesday, the ICU doctor also concluded that the first positive blood result was a false positive and contaminated and therefore, we were ok to discharge on Tuesday afternoon. In the end, all we know is that this cold that has been lingering in our family for a few weeks now progressed to an infection in Wyatt’s trach, which in turn raised his body temperature to over 99F (for CCHS that’s comparable to a high fever), and it is assumed that the combination of these factors then made Wyatt more susceptible to seizures. Whether or not he would have had the long seizure on Friday without his self-induced breath holding episode, no one knows. But we do know that he has more of those episodes when he is not feeling well. As usual, we dealt with the difficulties at hand and left the hospital without precise answers. Such is the life of CCHS. Once we got back home, it was nothing short of controlled chaos. Wyatt was bouncing off the walls happy to be home and so were his brothers, while Mommy and Daddy’s brains felt fried and we couldn’t form simple sentences. The adrenaline had definitely worn off and rest of that day is kind of a blur. All I clearly remember is that putting Wyatt to bed that night, still with the drama of last Friday in mind and knowing that he almost always throws a breath holding episode in protest when it’s bedtime, that night was the most nerve-wrecking breath holding episode ever. The anticipation of whether or not a seizure would follow made me hold my breath. Thankfully nothing followed and we all got some much needed sleep. We woke up Wednesday morning just hoping for an uneventful, boring day just to catch up and to let our brains recharge. Instead, that lingering cold was throwing punches for Calvin and Mommy, Wyatt still had diarrhea from the antibiotics and probably partially because of this bug that’s going around, and the two older boys had to catch up on school work from last Friday and Tuesday, plus what was scheduled for Wednesday – they’re doing virtual schooling. While it all seemed very hectic and overwhelming at times, that routine stress was far easier to manage than the hospital stress.

Since today is Thursday, I think, I am happy to report that we are all alive and for the most part well. So cheers to this f… cold leaving this house by the end of this weekend.