PICU trip #4, day #10…. Well today was going to be the day we go home, after a few attempts, but we’ve chosen to try and leave tomorrow instead. There is a lot of extra stress, on all of us, going home this time. So I’ll start at the beginning…or where I left off in the last blog anyway. Last Thursday Riley was still on the high flow oxygen in the midst of his cold, and we were hoping to get him well enough to be going home sometime over the weekend. Well he took longer than anticipated to start feeling and showing he was starting to get better, which we should have just expected. The weekend goal of discharge, turned into Monday morning, to get us to our genetics appointment Monday afternoon. That got shot out the window and our relaxing Sunday evening came to a screeching halt.
We decided to utilize our very expensive and experienced babysitters (aka, our wonderful nurses), and go out to dinner. Delicious pizza and yummy beer, it was nice to get out. Near the end of our meal, Chris got a call on his cell, a Seattle number he didn’t have in his phone and knew he needed to answer. Sure enough it was the ICU doc on the phone. He did a few minutes of talking before Chris said anything (of course the first thing he says to Chris is “Riley is OK”, but I don’t hear that!), and I swear I had a heart attack right there. Riley had a major desat, oxygen dumped down to only 8%, and was really blue and foaming at the mouth. He was bagged for about 3 minutes, and a code called, but came back up after that, looked at everyone like they were crazy. Of course not being there, it’s hard for us to be able to say, yes he got a big goober stuck, or he had a seizure, or whatever. However, looking at his monitor record, his respiratory never dumped or stopped, it actually worked harder. That tells us the likelihood of the event being a seizure, is very unlikely. From what we were told, how much stuff was suctioned out of him that was the culprit. We also found out that his medicine to help dry up his secretions had been doubled at some point, and that can actually end up making them too thick when the dose is high for the patient. So that didn’t help him either, he couldn’t move the blockage. He’s been relatively ok since, some desats here and there, but nothing that dramatic. Needless to say though, we did not go home Monday, and missed his genetics appointment.
So now Riley has been back on a small amount of oxygen (0.2 liters) basically since his event. We’ve tried taking it off, but he’s had a few smaller events. The doc’s thoughts are because of those, that Riley should be, and will be, going home on oxygen. Even though it’s a small amount, that little bit can give him extra reserves in his lungs, for when he does have an issue clearing his secretions, or possibly a seizure (which he did have a short apnec one on Monday afternoon). It was a bit of a blow and harder than anticipated for me to swallow this morning. I was so hoping that we could get him to the point of feeling OK without the oxygen, even for just during the day. We got all set up yesterday with a oxygen concentrator, tanks, and other support items for home, but still wasn’t prepared for the decision of oxygen all the time. Of course the hope is, that over time, hopefully just the next few weeks, we can start to decrease his oxygen needs. This will require someone watching him while off the oxygen to see how he’s doing, and if doing well, build him up on that time off of it. Then keep in touch with his pulmonologist in regards to how that is going, but definitely keep him on it at night for the time being when we’re playing around with day time needs.
The hardest thing right now with all of his respiratory issues, is the (preliminary) talks of a tracheotomy. The procedure itself for Riley, and all the life changing things that come with it, is a lot to absorb. We aren’t at the point to where it’s absolutely medically necessary, but docs want it circling in our heads in case we ever do get to that point. Coping with going home on oxygen for support is enough for me at the moment! Plus the fact that we missed our damn genetics appointment. The hope is once we get that ball rolling, if we can find some sort of answer, caring and preparing things for Riley, like the possibility of a trach, will be much easier. Rather than having 0% idea what the next few months or year brings, we have at least a 50% idea and can try to plan and prepare. Our ICU doc has been in communication with Riley’s geneticist trying to get his appointment rescheduled for the next week or two, rather than me fighting administrative people and waiting several more months. Hopefully we’ll have something on the books before we head home tomorrow. The best part of this hospital trip, minus getting Riley feeling better, is that my amazing BFF dropped her plans yesterday and today and took her first road trip with Riley's BFF, solo, to come and give me a hug. Totally surprised me and made my day(s). And Zeke said Riley's name for the first time while having coffee this morning, icing on the cake.
Fingers crossed prayers, good thoughts, etc. on everything as we take a new step in Riley’s care. This little boy is the light of our lives, and to have a close call like we did Sunday is our absolute worst nightmare getting way too close. If that were to happen at home….I don’t even want to go there. I have, and there have been many tears about a lot of things in the past few days. Here is to moving forward, making progress, healing, and doing (what he can) on his own again as we adjust to going home.
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