Hospital life, trip # ??

How many times in the past several years have I said the less I write correlates to how stable Riley has been? And the more I write, the more he has going on? Well…I’m writing…so I guess that says something without me needing to. Actions truly to speak louder than words sometimes.
Riley is currently laying in his hospital bed, sort of propped up, but not too much yet as he still has a lot of junk and the higher he “sits”, the harder it is to control. In rounds this morning, docs said that he should start sitting more today. Ha, I gave a little under the breath snicker, but just nodded my head “yeah sure, whatever you say, I’ll see how it goes and make the ultimate decision on that”. Sat him up for not even 5 minutes and he started struggling more, constantly deep coughing, and dropping his oxygen levels to 85-93ish. Nurse deep suctioned him, and got him settled and staying at 93, but that wasn’t good enough for me. Still to much work and struggle, and the more he struggles, the more he spirals. So back down the bed went to a more comfortable position. But somewhat inclined so he’s not flat ;-)

It’s so weird sometimes how quickly you forget about specific experiences being in the hospital. Like how much Chris and I are the ultimate doctors and decision makers in his care. Docs suggested an hour break of BiPAP today, and if he keeps doing well at that hour mark, to keep going. I put my foot down on that suggestion, keep going means keep pushing and in turn high risk for turning right in the other direction. I was thinking like maybe a half hour break, hour is pushing it for me, so I’ll be that helicopter mama bear when he has it off, and putting his mask back on myself before I see that he’s been pushed too far. We appreciate docs, nurses, RTs, etc who have suggestions and thoughts in his care, and when it comes to the medicine aspect of things, or procedures, or any unknowns we certainly lean on and rely on them. But the day to day things of his care, that are just on a different level here, we are the “certified” docs and call the shots. 

You also forget quickly how slow things go during the day, the waiting, the amount of TV and movies to keep Riley semi-entertained. Some days things can fly by, but usually that’s the case of things not going well. So I suppose I should appreciate the slow quiet more, like right now. I’m trying, but we all know how patient I am, and I’m choosing to sit here and write to keep myself busy. I also wanted to try out my new iPad keyboard that I got for upcoming travels. And the words and typing are just flowing, so I guess I’ll keep going? Oh wait, need to change the TV channel for Riley…girly cartoon came on that I know he turns his nose up to ;-) ………………………………….

Alright found Paw Patrol, we’re good. Something else you forget about quickly, is how much stuff you “need” just to be here. It always seems like we bring in a (tiny) house worth of crap. But you need to be sort of semi-comfy (or attempt to be) sleeping, so there is mattress paddings, comforter, warm blanket that isn’t one of Riley’s smaller blankets, real pillows, etc. Then there is a real human sized towel to use in a public shower, vs the hospital ones that I swear are more like dish towel size. Hell even for Riley I think they may be small! And of course what did I forget when I packed up all this stuff, and forgot to have Chris bring me one this morning…my real life real sized towel. Bah. 

There are also those other items to keep you busy throughout the day, like an iPad to stream shows and surf the internet…or write a blog! Computer for some work to really just keep you distracted. Water bottle so you’re not having to drink out of a plastic hospital container. Changes of clothes, headphones, books (although I’ve gotten more use to reading mine on my iPad now, which is nice for upcoming flights I have too…less to lug around), all of Riley’s buddies (aka just part of his zoo, that he tends to add new members to while here), and so much more. It feels ridiculous sometimes when it comes to packing up to go home. But spending this much of our life in a sterile boring stressful environment, I don’t care. You need “things” to keep your sanity sometimes. 

Monkey boy just started his next RT treatment, which means a free face will soon follow. Translation: respiratory is here using a black device that looks like a hand held massager, and basically does the same thing, on his chest to loose up his boogers. Then they’ll do a round of cough assist (which he gets at home, usually just morning and before bed), a machine that literally simulates coughs, and you can adjust the settings on it for how long the cough is, how “deep”, etc. It was a game changer for him when it first came out, since he doesn’t have the strength that you and I have with his coughs. I remember hospital trips at Swedish, the machine use to be HUGE. Thankfully by the time it was needed for him at home, it’s much smaller and portable. After that RT (respiratory therapist) will suction out all the loosened boogers, through either his nose or mouth, or both. I could get into real nitty gritty and gross details there, but I’ll spare you and leave it at that. 

We’ve learned to deal with a lot of things like suctioning Riley’s boogers, changing gtube buttons, holding a mask to his face while a machine forces him to cough, burping him by hooking up a gtube extension hose with an open 60mL syringe so his belly can release bubbles, which also comes with stomach gunk at the same time…and a lot of other weird, gross, or different things than most parents would ever imagine doing with or for their child. It’s second nature to us now. We’ve learned as we’ve gone, Riley deserves the best, and that includes his day to day care. What’s different for you is normal for us. I’m use to those weird looks from strangers in public who have no idea what I’m doing to my child when I’m actually just burping him. Or wondering why this machine in his backpack is so loud and I’m shoving a suction tube down his throat to help expel some boogers so he can breathe better. I don’t think much of it anymore. Being here in the hospital though…all that is normal! Which is really only one of the nice things about being here.....................

Had to take a break from writing for just a bit, Riley came off his BiPAP for an hour and did well. Still had some deep junky coughs but handled them well on his own. I think if he didn’t have the BiPAP on at all, those coughs and junk would wear him out real fast and cause issues….but that’s why we work our way up to time off with baby steps. If Riley follows my thoughts on healing and theoretical schedule of increasing time off BiPAP, hopefully we’ll be going home mid-next week. But we all know that Riley writes his own book, at his own pace. Can’t REALLY put him on a certain schedule at all, just more of my planner personality trying to find some control in an uncontrollable environment.