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. 

Juggling life

The length of time in between blog posts definitely directly correlates to how well Riley’s health is. The closer posts are together, the more we have going on, and want to keep everyone updated. The more stretched out time there is between posts, means he’s at least somewhat stable and we don’t have too much to report. In the past year, Riley has managed to keep his dramatic hospital trips to a “minimum”, started and completed (all day) kindergarten, and is now a very lengthy 3ft 9in tall 6-year-old. 

Riley absolutely loved going to kindergarten. Going from 4 days a week 2.5hrs a day in preschool, to all week long, and all day long was a big adjustment. Probably more for us, me in particular, than him. Just from a logistic standpoint of his care, lengthy time sitting up in his chair, and being away from home for an extended period of time. Took some getting use to, but so worthwhile. All you have to do is mention school to him, and he lights up. We can see some positive changes in his cognitive and understanding of his surroundings, his social emotional skills, and the pure love and friendship that he had for his classmates, and vise versa. I got to join him on their walking field trip to the library in May, and oh man the love his buddies have for him was so obvious, made this mama very happy. 

A few years ago, we had to move his bedroom down to the main floor, due to carrying him up and down stairs just became too risky and dangerous. But we live in Snoqualmie, in a home that’s raised an entire floor from our driveway. How do you easily fix that? Certainly, we were not about ready to convert the garage into his bedroom, have him basically trapped in one room, let alone there’s no direct inside access. Yeah, wasn’t even a thought. We thought for awhile that we could sell and find a rambler, since we have decent equity in our home…. but the problem is we’ve fallen in love with the Snoqualmie Valley and didn’t want to move too far, so “the right” pickings of homes was very minimal. Soon discovered unless we had more money and built a home, it wasn’t going to make sense. 

That’s when the plan of home renovations started. Requiring a refi on our mortgage we’ve been able to paint the exterior, get an exterior lift, extend our front porch and redo the front stairs, a lot of “smaller” outdoor & indoor projects, make a down payment on van that will be converted for his wheelchair (at some point when we “find” that $$), and finally redoing our back deck neck week. Yayyy for having that done before summer is over and we can enjoy the warm weather and BBQs with family. And I’m not one who understands, or cares much to, home projects. With the craziness of our lives, that’s just one more thing to figure out how to juggle...and the lift especially is very specific and needed to be done to safely get Riley in and out of the house. My dad has always been a good handiman and has tons of experience with contractors from years of owning his own business. And he retired from his line of work last year...so Super Pop to the rescue in coordinating contractors and actually doing a lot of labor himself to help try and save some money. Riley’s going to ride the school bus next year for first grade, man will it be nice just to load him into his chair, take the lift downstairs, and get on the bus...and it doesn’t have to be ME doing it (even though it will be most of the time😜)! 

Riley isn’t a kiddo that just anyone can care for and do things for. He has so much going medically, extreme physical restrictions, and we don’t know how slow or fast his disease will cause new “issues” to pop up. Having a child with a degenerative disease has caused us to find our inner strength and lean on those closest to us. We’ve lost some people along the way, but those who truly matter “get it”, or as much as they can, and are always there for us. 

And that includes our parents, not only because they love us and him dearly, but they’re the only ones we can actually have take care of him when we’re not around...unless he’s in the hospital, which we just don’t count. He can’t do things himself, needs such close eyes and basically a “trained Riley nurse”, to keep him safe and healthy. I don’t know what we’d do if we didn’t have my parents close by and Chris’ who come up all the time, and sometimes for stretches of time. Might pull my hair out...

But this week is a prime example. My parents are going on vacation for basically two weeks. And I can’t rely on them to help with Riley so I can go into work. So what do I do? Improvise and am very thankful my organization is so understanding. So Riley gets to come with me into the office multiple times, and to two of my weekly team meetings. He mayyyy be a bit of distraction for some who will be excited to see him😋

So life is a bit crazy over here, juggling chaos, leaning on those we need, but we’re figuring it out as we go along. As do most parents, our journey is just different than most. It is what it is and we wouldn’t have it any other way. ❤️