Overall, it was a light week without too many revelations.
However, it’s never quite that easy…..while true that we didn’t have too many appointments, there seem to be so few anymore that are just “routine”, for lack of a better word. Even if one, or even two of the kids seen alone might produce a “routine” appointment, there is always one that takes it in another direction. And while nothing discussed was a “revelation”, it doesn’t mean there are not changes that are emotionally difficult to swallow.
On some level, I loathe writing this post. I need to….for me as much as anyone else….but what I really want to do is write about the fun stuff from the week. The next installment will be nothing but FUN….this I can guarantee!!
We started the week with Madison still trying to recover from her gut shut down of the week before, which has been a slower process than I would have expected. Although, considering how run down she has been, for so long now, I guess nothing should surprise me anymore.
While we have had oxygen sitting in the house for a couple of weeks now, because we are still lacking the pulse ox machines, we’d been waiting to get started. However, last Friday night Madison was having a lot of shortness of breath at bedtime, and since we’d heard from Pulmonology that we could go ahead and start while we wait for the pulse ox machines, I offered her oxygen for the night to see if it would help. And it did. We’d continued with her over the weekend with plans to get the other two started when we got to Houston. In preparation, I had gone ahead and filled our portable containers to take with us, knowing we might need to get through a night before the O2 company could deliver what we would need for the week.
When we made our usual pit stop at Buc-ee’s, I noted that Madison was not looking so hot and offered to get the O2 and let her wear it the last hour and a half till we got to my Aunt & Uncle’s house, which she immediately agreed to. On the one hand, I wasn’t pleased that she was feeling cruddy enough to be willing to wear it….on the other hand, I am pleased that she is already feeling a positive affect. Always a mixed bag.
We were not able to get a room at RMH for our first night…..something that’s only happened one other time, but is the risk we take. Thankfully it meant we got an evening with my aunt and uncle with some time to visit, making the delay in getting in to RMH thoroughly enjoyable!! At least for the first night. We were hopeful we might get in on Tuesday though, especially now that we need to have O2 delivered and not knowing where your going to be makes that a bit more complicated.
On Tuesday, Chance saw our pulmonologist. I honestly didn’t think there would be all that much to talk about since we were just getting started on the O2, but for the second time as of late, when they did the spot check of his O2 sats there in the office, he was sitting at 96 for an extended period of time. 96 isn’t bad by anyone’s standards, but IS different for him, and a little lower than the pulmo wants him sitting at. Had this been the first time I had seen it, I might have blown it off, but that it was the second time in a row & I suspected it might be more accurate than I had given it credit for the first time.
As I have said before, we really love our pulmo. She was, as always, very attentive….and more, she wants to know everything that is going on when she sees the kids, not just the breathing related issues. While it makes for a longer appointment, it is always good to have as many smart people as possible thinking about what we are seeing.
In light of the sats we were seeing during the spot check, she hooked him up while we visited to see what was going on. Part of me expected it to be fine, now that we were actually looking at it, but sure enough, she hooked him up and he just sat at 96. She had him sit up and while we were able to get him to pop up to 98 for a little bit, after a few minutes he dropped back to 96 and just sat there for the rest of the appointment.
In light of this, our O2 plans have changed a bit. She wants me to spot check him during the day and if he is sitting below 97, she would like us to supplement with O2 and see if we can get him consistently satting higher. We will keep her posted as we start being able to monitor with the pulse ox, both night and day, and will see her again in August to go over how it’s all working out.
Unfortunately, we did not get into RMH on Tuesday, but with early morning appointments the next morning, staying anywhere but close by the medical district didn’t make sense. We were able to find a hotel room not too far away that worked out okay…..and I was able to go ahead and get O2 delivered there.
Wednesday morning, all three kids were seen by our immunologist. For Chance & Abby, the appointment was quite routine. Other than a few changes in Abby’s meds to deal with the sinus issues she has had this year, there really wasn’t much else to talk about. For Miss Madison, the big news was that she HAD been able to build titers to the vaccine we had given her in April. This is good news in that it means she has all the parts to her immune system to do what needs to be done……and at the same time, was bad news in the sense that clearly her immune system is not working right (all the right parts, or not), and this took any hope of having a treatment that might help support her immune system off the table. It was not a shock, and I had already started wrapping my mind around our alternative….we can only support her as much as possible, as quickly and aggressively as possible, when she starts showing signs of infection. Already working on it.
While there, we had a nice visit from 2 of the ladies working in our mito specialists office, both there to talk to us about some fun things they are working on, and needed our input and the kids artistic abilities for. When all was said and done, our immunologist being behind schedule turned out to be a good thing, and we had plenty of time to visit and work on our project. Always nice when things work out that way!!
Thankfully, very shortly before we needed to make a decision about staying in the hotel for another night, we received word that there was a room available for us at RMH. I had no idea how discombobulated it would make me to be in limbo that far into the week. No doubt in part because this was also the first time we were dealing with the O2, but I was exhausted and out of sorts by this time, and never so happy to get settled somewhere familiar with people we know care about us!! Even when that means re-packing (at the speed of light so we could check out on time), and unpacking AGAIN. It was, perhaps, a good reminder of how blessed we are to have this home away from home….not that I ever forget it!!
Bright and (far too) early Thursday morning, Chance and I checked in to the hospital for a 23 hour video EEG. Chance has been having some episodes that seem seizure-like and so the EEG was ordered to see if we could catch something to give us some clues. It’s always unclear whether you’ll catch something while your there, but as often as he has been having these episodes, I was more optimistic than usual. He did have a mild one during the strobe light/hypoventilation portion of the test, and it was noted, but otherwise we were a bit jinxed and he managed to make it the whole time without another one. In the end, it may or may not show something.
My mom came over at about 11:30am to take over the bedside vigil so I could take the girls to see our pulmonologist for their appointment. Like for Chance’s appointment, I didn’t anticipate having all that much to talk about since we had just started the O2, and for the most part, this held true. Madison though was looking horrible by the time we got there, and did nothing by lay on the table, essentially refusing to interact. VERY unlike my girl, especially when we are seeing this doctor whom she loves to chat with. With all we have been seeing, while using O2 during the day with Madison had been discussed as something we might need to do, the pulmo talked with Madison and I both about the need for it considering how she is doing right now. While Madison is still insistent she doesn’t want to wear it when other people can see her, she agreed to use it otherwise. The only other change we are making is to try a nose mask for Abby since the canula is bothering her. It has a kitty cat nose & whiskers on it, so Abby thinks it’s adorable!! In a very positive turn, both girls were already feeling a positive effect of using the O2. Considering we were away from home and all the stress that comes with that, I honestly wasn’t sure if we’d be able to tell whether there was anything positive with it or not, so as much as my heart wishes it wasn’t needed, I am pleased to see it’s already making a difference. I am anxious to see how they are doing after a week here at home on it!!
Mom and I switched out for the night so I could be there with Chance until he was done Friday morning. Friday was spent taking care of some loose ends that needed our attention while we were there, ordering one more night of O2, and taking Abby over for labs.
Madison is still struggling. She’s swelled back up again, not quite as badly as she was a few weeks ago, but only barely better. She’s exhausted & cranky & just generally not feeling well. Whether she’s still recovering from the gut shut down, and last week just added to her already stressed system, or if she is brewing something new isn’t clear yet. I don’t even know which one I am hoping for!!! Watching her closely and hoping there is a clear indication when/if we need to support her more than we already are here at home.
Next installment…..FUN!! Oh how very grateful we are that even in the midst of all this stuff, there is fun to share.