I feel like so much happens in just a matter of weeks, I could write a book each time I get a chance to update. Riley was home for a total of 10 days, before returning to Swedish. We brought him in to the ER the evening of September 30th, because the previous few days to that he was having a lot of trouble swallowing and controlling his secretions. The first week being home, he’d cough and gag here and there and only need to be suctioned a few times a day, so no big deal. Then he progressed to constantly spitting up (a lot), choking, and needing to be suctioned constantly. Obviously none of us could live like that, so in we went. As I had anticipated, he was admitted, this time up to the peds floor to be monitored and try and figure out medication to help control the excess problem. Being up there less than 24 hours, they decided to move him back down to the PICU, as he was having some O2 problems, and the PICU nurses are better equipped to deal with that, let alone know him REALLY well!
So we’ve been in “Riley’s room” since early this month, trying to get him stable and moving in the direction of going home. Only having been truly home for a week and a half since the end of August, it does not feel like mid October! It really weirds me out when I’m out early in the morning or later in the day and it’s dark, when I’m use to it being really light. Not really seeing the gradual transition since we’ve been here. While time passes us by outside, Riley has been here working on his excess secretions, having GI surgery to have the feeding tube placed into his tummy and his esophagus wrapped to prevent any reflux (and the issues that come along with it for him), and having a very long EEG. It’s always fix one issue, create another, why we can never just be here for a few days anymore…on day 16 now, with at least the rest of the week to go, if not longer.
We made the decision pretty quickly after being admitted that since he was recovered and healthy after his pneumonia spell, and that he was only about a week away from his surgery consultations, it made sense to go ahead and have surgery while here. Surgery was successful last Monday. He took about a day to heal before being taken off the ventilator and starting his feeds. So far everything G-Tube related has gone great. Have gradually gone up on how much we can fill his belly with, and are now working on spacing feeds out farther apart, so it can be more realistic for going home. Of course as one thing goes well, he has to create another problem, at least while we are here I guess.
A few days after surgery we decided to have another EEG done, and to be honest at the moment my brain is so scrambled I can’t remember the exact reason why that decision was made. Not that it’s super surprising for him. Probably because he was having more oxygen desaturations and we wanted to make sure they weren’t seizure related. Of course while hooked up, his desats didn’t register as seizures, but the doctor decided to keep “the hat” on through the weekend as she was seeing a lot of hypsarrhythmia (abnormal chaotic discharges in the brain, usually associated with IS). It’s a good thing she did, because he started having a new type of seizure, focal point. Good thing about that is that it’s specific, you can see where in the brain and immediately give the correct medication to stop and control them, which is working. Bad thing, he started having more seizures. Not to mention that she did see a spasm while he was hooked up for the week, and the hypsarrhythmia increased significantly, so there is concern that since he’s been off the ACTH for almost two months now, that the IS is trying to come back.
“The hat” finally came off on Wednesday, a week later. He was able to go seizure free for over 72 hours, so we are confident that his new seizures are fully under control with his new med. Of course he’s now on four different antiseizure medications. Once he’s stable and home for a bit, we will be working with his neurologists in regards to which ones to keep him on, or how to adjust doses on some, as he doesn’t need all of them at the moment. The newest one is the most important, and the one he was already on before we came in during August. Once stable and home, we will also be coming back shortly after some rest at home to possibly do another EEG, and then probably start him on the ketogenic diet to help curb and stop the IS from coming back. In modern times now, medication is always “the solution”. But the Sabril didn’t work 100%, and actually made changes in his brain, so we don’t want to try that again. And then the other medications that are proven to work are ACTH and other steroids, all of which will deplete his immune system, and that’s not something that is safe for him, especially right now. Definition from Wikipedia (so I don’t have to type and try and explain!):The ketogenic diet is a high-fat, adequate-protein, low-carbohydrate diet that in medicine is used primarily to treat difficult-to-control (refractory) epilepsy in children. The diet forces the body to burn fats rather than carbohydrates. Normally, the carbohydrates contained in food are converted into glucose, which is then transported around the body and is particularly important in fuelling brain function. However, if there is very little carbohydrate in the diet, the liver converts fat into fatty acids and ketone bodies. The ketone bodies pass into the brain and replace glucose as an energy source. An elevated level of ketone bodies in the blood, a state known as ketosis, leads to a reduction in the frequency of epileptic seizures. So not only is it the safest route for him, it’s generally very effective. Some people only need to be on it for a short time, others longer. One good thing is that he has his G-Tube, so we don’t have to go through the process of planning out his meals, measuring food, etc etc. We can get a formula version of the diet, so there is no big change in how he eats. For now, he’ll stay on his low-cal formula (as he’s gain a lot of weight very quickly since his hospital stays), and once stable and home for a bit, will work on this stuff.
The next steps to hopefully get him home sometime next week are to wean him off of his high flow oxygen. Been a bit of a slow process because each time he’s gotten off, his numbers just kind of teeter on the edge of what is considered normal, and not. But right now he’s at room air percentage, and a pressure of just 3 (when he had pneumonia he had gotten up to 60%+ and pressure of over 20)so not really too much at all. He even thinks it’s no biggie, as he keeps trying to rip the canula off his face, and has been successful on multiple occasions!
Hopefully we can get him completely off today and keep him that way. He’s also been fighting to control his secretions still, but it’s nowhere near the big trouble it was for him when we first came back two & half weeks ago. One thing that helps is the nissen wrap (top part of his tummy wrapped around his esophagus to prevent reflux), and he has a much stronger cough so he can help fight the gunk when it gets stuck in his throat and is hard to swallow. We are still suctioning when needed, but for the most part can’t get too much out of him, or he controls it before we even get the chance to try and help. Other than that, he will be evaluated at some point by an ENT (ear, nose & throat) doc, in regards to his random oxygen desaturations, mainly when he’s sleeping. Just to see if they can tell us if there is anything obstructing that isn’t helping his breathing, or if they have any ideas for keeping him safe at home. Other than those, he’s doing well and I know is itching to get home! As Chris and I are both, but we’re not holding our breath on how quickly or when that might be. We want everyone on the same page and completely confident that he’ll be safe at home, and we won’t be returning within 10 days of discharge, at least for an unplanned event. It will be interesting going home, as I said I’m weirded out about how time has just kept going by outside, and that it’s now past mid-October. We’ve spent a total of 10 days at home since the end of August, and now Halloween is just around the corner, and we’re starting to try and figure out Thanksgiving plans. Will have to see how the next several weeks go with the kiddo in regards to still going to San Fran then, and if we deem we can, it’ll be some last minute tickets! Right now I’m just looking forward to the small things. Being up walking around doing things around the house, like laundry and house chores you would never think you could miss. Cuddling the monkey in our bed while he passes out in my arms. Chasing a hyper-active Sadie up and down the stairs, while trying to tell her to stay quiet while Riley sleeps. Fingers crossed some sort of normalcy can start returning within the next week.
