I don’t even know where to start. The past month has flown by, and crawled by at the slowest pace possible. I can’t even fathom Riley’s last hospital trip at the end of July, as it was only for 4 days. At the time, it seemed like forever, and we pushed every day to get things done so he could go home. Take that and times it by six, good god. Thankfully the nice thing about the PICU at Swedish vs the PEDS floor, rooms are way bigger, pretty much to accommodate more of the equipment he needed, but also allowed us to bring in our air mattress after the first week. Beats the cots and hard window seat beds, but still even after that long, and being home for a few days of constant bending over his porta crib, both of our backs are shot. Not to mention the three pounds this monkey gained while being stuck in a hospital bed! But we can’t exactly complain because we weren’t the patient, nor dealing with what Riley is.
Coming home with another car load of medical equipment for the boy, high stress of his oxygen dropping, choking on his sudden increased secretions, possible seizures (despite his cocktail of meds), really makes me appreciative that Margie has been able to stay beyond the weekend to give us each some extra help, and peace of mind. We can’t thank you enough. The stress and nervousness of bringing him home from the hospital when he was born, doesn’t even compare to how we both feel now. Even though I know neither of us are a fan of having an oxygen sensor, and emergency oxygen tank on hand for the boy, we definitely have a sense of relief to have them for if/when needed. We have Riley in our room right now in his porta crib, with the sensor hooked up at night. Little bit of a blessing and a curse. Blessing because we aren’t both lying in bed wide awake at night staring at him all night to make sure he’s breathing ok and not having any issues. Curse, because at times he teeters on the edge of the alarm when asleep and needs to clear his throat, so we get woken up multiple times a night, and about half of them he doesn’t need anything. But what are you going to do, better to know he’s safe.
So gist of his remainder of his hospital stay, he came off his oxygen in his own time and recovered from the pneumonia and rhino virus (aka cold, he just got hit hard with his muscle issues). Of course once one issue starts to retreat, another shows up. He started having seizure like symptoms where he’d either go apnea and then his oxygen would dump, or his oxygen would go down significantly on its own. And if I already started to dive into this already, this exhausted hospital cooped up mommy brain apologizes. Sometimes, he’d bounce back on his own, other times he’d need to be bagged to get his oxygen to recover. Battling that for awhile, it slowly started to get better and better, and we eventually did a sleep study, and yet another EEG. Sleep study showed that there might have been some sort of seizure activity, surprise surprise, but the EEG itself didn’t register any. The movements he had that were pretty tense and twitchy, is nice to know they aren’t seizures. We’ve seen some since being at home, but not to the extent of what we saw while in the hospital.
So now that he’s home, with his ND tube still, the goal is to give him a few weeks to recover and prep himself for going back to the hospital, as a PLANNED visit. We won’t go see all his lovely nurses out of an emergency factor. His cocktails of three different seizure meds are staying the same for now, as they seem to be doing the trick of keeping them at bay. He is growing stronger and less twitchy, battling some increased secretions, but very happy to be home despite the extra cautiousness and added things to our lifestyle. While in the hospital he had a spinal tap, and sent off some more DNA for another panel of genetic testing, this time for developmental delays (last one was specifically for epilepsy and still waiting on 100% answers on that). Hopefully we may have some more light on those results in a few weeks, and shortly after he will have surgery for a GI peg. We have a few different options on the specific surgery for that, but we’re trying to give him the few weeks of healing time, to hopefully be able to make a more informed decision closer to surgery time. Either way, it will get the tube out of his nose, that he now is fully aware of and has amazing movement back to trying and swing his hand up to yank out.
Give it another week…and he’ll have done a very good job at, at least, trying to pull that sucker out, if not actually succeeding. On that topic, the good thing seeing while in the hospital, arriving the day after he had his last dose of ACTH (which by the way both EEGs in the last month showed his IS, are still gone), he’s gained so much movement, strength and energy back. Our wiggle worm with a butt load of personality is shining through will full force, even though he’s not back to feeling 100% after being sick. It gives us so much hope that despite what all his testing shows and tells us what kind of neurological (muscular) disorder he may have, he’s extremely capable of not only bouncing back, but being stubborn in making progress on figuring stuff out on his own and making it happen. He may not sit by himself in the next few months, let alone crawl of walk, but our happy giggly bubbly boy is back and doing everything he can to tell us that he can take what gets thrown at him, and us, will full force (and lots of dinosaur grunting noises)!
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