Finding that routine and becoming comfortable taking care of your kid 24/7 without doctors coming in and out and lots of nurse help, is well, interesting. We both of course know how to, very well and are more than capable, but you still get that slight nervous feeling in the beginning. Like when you bring them home from the hospital for the very first time and that hesitation of unknown. We know a lot when it comes to this kiddo, but each time coming home from the hospital always has something knew to just get use to and find the groove with. This time it was some additional meds, and doing all his feeds through the button in his tummy. The concept isn't any different than the NG or ND tubes, but still something to get in the swing with.
Riley has been doing awesome at home. He loves being able to put his hands all over his face and not have a feeding tube (or oxygen!) there to yank onto. Finding a normal sleep schedule has been a bit of a challenge because most nights he doesn't want to go to bed until late, then ends up tired the next mornings. For the most part he's out a good chunk of the night, letting us have mostly normal sleep. Just a work in progress as he's getting older and doesn't want to nap much, unless he's just that tired. He's certainly becoming a typical toddler, in his own way. Constantly making noses, wiggling around, starting to spin, slamming his legs, punching me in the face, wanting attention, etc etc. he just can't run away from us yet, or yell no and defy us that way. Doesn't mean he doesn't try!
First week home was free of doctors, and nice to find our routine and just be home. This last week he had a couple follow up appointments, thankfully nothing big coming from either. He saw a ear/nose/throat doc on Tuesday to make sure there isn't anything structurally that could explain his random O2 drops in the hospital, everything is fine there. Saw Vlcek on Thursday and still no genetic results, basically waiting on those answers to determine the next course of action in a diagnosis. We did go over his week long EEG and how he has some hypsarrethmia coming back. Rather than jumping right into the kinogenic diet, like Simon thought, Vlcek wants to adjust two (of four) dosages of antiseizure meds. So we will give that this month to adjust in his system, then do another EEG and see if that made a difference. Ideally it will, and the diet wouldn't be on the table any more. We will see. Said that his mri did show the abnormalities from the sabril med, going away. But there are new abnormalities that are not from that. Said some of his brain cells aren't projecting the way they should, and that affects brain and nervous system functions. But right now, that's all it tells us. He will need another mri in the future and it will be used to help diagnose him, but that on its own doesn't say what exactly is going on. Let's get as much shit figured out this year before insurance resets!!
Riley had a good time at gram and poppa's as a little wild thing for Halloween. And will continue to enjoy normal family things until returning to the hospital for a PLANNED visit for another EEG at the end of the month sometime. Until then, it's working hard at PT, giving smiles and smooches, and enjoying his own home, and dog!
Note: the urgent care trip today that turned to er visit was just for his left eye. It's been puffy lately and woke up this morning to it basically swollen shut (he had been laying in a big pile of drool, silly man). Just a bacterial infection that daddy is picking up antibiotics for as mommy works out and blogs.
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