A close call and new support

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. 

Hosptial trip #what??..

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. 

Neuro appt & a cold...

The amount of additional love and support that we have been receiving over the past few weeks has absolutely blown us away. We can’t thank everyone enough for helping Riley to continue to move in a positive direction. We had our follow up appointment with Children’s neuro yesterday, and we probably went into it with higher expectations than we should have had. Came out feeling a lot like previous neuro appointments with Vlcek, not having answers or a clear direction to continue moving in. Riley’s mito results are basically considered “normal”, nothing specific was found. However his percentages on things were above what would be considered a normal range, which at the moment is just odd. Odd, because if there was a specific mito disease, those percentages would be lower than the normal. So what does higher mean? At this point, more things that just aren’t clear. So Saneto (Children’s neuro) is going to look through Riley’s book of a chart to make sure that there hasn’t already been a mito DNA panel run, and if not run that. As far as we know, it was never mentioned to us that it had been done already. He is also going to speak with a college of his about getting Riley in on a genetics research that is being done on kids under the age of 3, who have severe epilepsy. He’s pretty sure she will still take candidates, but needs to double check of course. I have a feeling I’ll be calling Saneto’s nurse by the end of next week to push buttons on both of these things if we haven’t heard about them one way or the other. 

Next step, his hour and forty-five minute long genetics appointment at Children’s next Monday (4/20). Not sure what to expect exactly, but have a general consensus that we’ll discuss the genetic panels that have already been run, and what the next steps should be. Our guess is that since the full gen-nome panel has been suggested by both Vlcek and Saneto, that this will be discussed as well during his appointment. Whether it’s something we need to jump on and do ASAP, or if we should wait on what Saneto’s other ideas could bring to light, etc. Either way, I think we’ll both need a beer after that appointment!! 

Riley has been doing really well physically and mentally lately though. He seems much more aware of his surroundings lately, and more interactive. He’s been doing great at, at least, attempting to move and use the little strength and muscles he has. We catch him trying to straighten his back and sit up more in his toddler chair, kicking his legs the highest we’ve ever seen, figuring out how to better hold his head up in his high chair, etc etc. His therapists have been very impressed by him lately, which make Mommy and Daddy even happier. Unfortunately, Riley now has a bad cold. Started out yesterday just a dry annoying cough, but woke up this morning really stuffed up and just exhausted from not being able to sleep very well because of it. First time being sick while on the Ketogenic diet, so it’s not like we can just give him any kind of med to help him feel better; most contain some sort of sugar/carb, that can throw the diet of whack and put him even more at risk (than just being sick) to have a seizure. So for now he’s getting Tylenol and rest, and see how he feels come Monday. At least this will be the one week where he doesn’t have any big appointments, so use it to rest and recoop! 

Thank you all again for your wonderful support. Please continue to pass Riley’s story around! Until next time….