Well for those of you who don’t know, Riley is back in the PICU. We brought him into the hospital Monday morning after a weekend of congestion and feeling crummy. By Sunday night it was getting hard to keep his oxygen levels in normal range without extra support. After being admitted to the peds floor, he got moved down to the PICU Tuesday evening because of how much he was coughing and struggling on all his gunk. He can be monitored closer here and given more intervention when needed. This pretty much came right away. He got put back on high flow oxygen almost right away after coming downstairs. After just constant coughing, hard secretion management and desating, it made the most sense to help open up his lungs and clear himself more.
Yesterday and today are just filled with keeping him comfy, doing CPT (chest physical therapy), and letting him rest to start getting his cold out of his system. Hopefully tomorrow he’s feeling even better and we can start slowly taking away his extra oxygen support, and home sometime over the weekend. Of course we want him better at whatever cost, but also have to try and make his genetics appointment Monday! Otherwise I’m going to be begging the doctor to come and see him here, or we’ll be waiting multiple more months to get another appointment. Hate to keep having hospital trips setting him back in continuing to search for his diagnosis, and progress in PT! Fingers crossed that after this, “shorter” trip, he can manage to stay home for another good stretch and make some good progress on all counts!
However being here does have some (small) perks. We can do the whole “kill two birds with one stone” type thing and get some other medical related things accomplished. For instance, he’s lost some weight (also grown!) since starting the Ketogenic diet a month ago. Now that he’s doing well on the diet, we’re slowly adjusting his recipe and daily amount of calories (more calories usually brings putting more carbs/etc in play that you want to avoid). We’ll do this slowly to make sure his body tolerates the changes, but the first bump up happened yesterday. Also we’re getting closer to finding a good balance on helping the side affect of constipation, something I’m sure everyone wants to know, but it sure makes Riley happy! We’ve also gotten a chance to follow up with Vlcek since his apnec seizures and starting the diet. He, and everyone else, is thrilled to hear how big of a change it’s made so far in his seizure activity. Not counting the first week or two on the diet, we’ve only seen one definitive seizure since, the one over Easter weekend. And for him being sick and vulnerable to that right now, and continuing to not see any while he’s feeling like this, is huge. KNOCK ON WOOD. Trying to see if we can swing getting his g-tube changed out as well and avoid an office visit next week, we’ll see on that one.
When we do go home, we’ll go home with a home care sick plan that all of Riley’s doctors have agreed on and are in the loop with each other. This will include having an oxygen concentrator (machine that takes in room air and converts it into pure oxygen) to use when he gets a cold and can try and ride it out at home. This way we’re not burning through our emergency oxygen tanks, like we did before coming in. We will have some sort of line drawn in the sand for when doing things like that at home just aren’t going to cut it and he needs to be admitted for additional support. Plus Vlcek is writing us a referral to see a pediatric pulmonologist at Children’s. This way we have someone who is in direct control of Riley’s respiratory issues. What else can I do to be productive and proactive while here?! Fingers crossed we’ll be going home in a few days and we continue to make progress in working towards answers and getting him healthy and making his own progress.
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