Odd comforts & springing ahead

My new year’s resolution of writing more is totally working out well, ha. Ok, so I may not be blogging as much as I had wanted to try and do, mainly due to the time and effort, but I am writing more. I bought myself a journal for the first time in years, where I feel even freer to say what I want, and I have been using that on a (more) regular basis. But today Gram is hanging out with the boy and I set aside enough time after my errands to sit at a local coffee joint and tune the world out with my words. So here we go.

We managed to go in to our first PICU trip this year together, and came home together. After the difficulties, Riley endured last flu season with RSV & pneumonia, and another pneumonia with a broken leg, we’ve been just waiting on the edge of our seats for the next big trip and hoping it goes as well as possible, but also knowing the reality that there is the possibility that it won’t. But guess what. This ended up being the SHORTEST hospital trip for an illness (12 days total including admission and discharge), and he rocked it for the first time in a long time, WITH NO BREATHING TUBE! We’ve been so nervous knowing how bad this flu season has been, how many more have passed because of it, so God only knows how it was going to affect our little man. More than likely he got it from me, and in all honesty, I think he rocked it better and faster than I did for the most part! If his stubbornness came from showing Mama up this time, I’ll so take it!!

Hospital trips never go smooth though. There is always some other curve ball he likes to have doctors scratch their heads about, that doesn’t necessarily have anything to do with the reason he was admitted (Flu, strain B). It seems like last year we came home with a lower “normal” heart rate, and even more so this time. Looking back, he probably dropped roughly 10 beats/min at last discharge (beyond his normal not what he was admitted with). Now it feels like he’s dropped another 20 beats/min, beyond normal. So, his sleeping can be anywhere from 60-90s, and awake 75-120s. Yes, as a kid gets older, their heart rate starts to slow down (verses being 160s+ when you’re a baby), but it’s always co-insided with a hospital admission, and then discharge. And with how low, not quite pushing bradycardia (how many new medical terminology have you learned and looked up?). Of course, he started this just a few days before going home, in the middle of the night, with a combination of low blood pressure. His BP eventually stabilized, but his heart rate has stayed lower, it was “just going to be kept an eye on, while he’s here”. K, nothing drastic happened, but now we are still a bit on edge and aren’t going to ignore it. Makes me wonder why, and why these instances are tied to hospital trips, that tend to have higher stress on his body (that has a progressive neurodegenerative disease). Not to mention, much more instances of oxygen de-saturation. I just wonder, specifically the oxygen desats, how that’s starting to have an effect on his heart….

Plus, he’s always had on and off urinary retention issues, a little bit of a cluster f*** of it the weekend prior to being admitted, of course when I was out of town. So of course the first few days with feeds held he peed less, despite extra fluids, made him puffy instead, surprise! Always happens, you’d THINK docs wouldn’t be surprised by it with him…let alone most kids. He then got back on a normal schedule as he started to feel better, and then the last few days it’s like he was almost making less. His bladder wasn’t holding on to it, because he was never bloated, just less coming out. So, makes everyone scratch their head, but of course have with no real answer and it’s “just going to be kept an eye on, while he’s here”. Thanks, but what happens if it turns into something?

But we also can’t stick around the hospital on the ‘what if’s’. We’d literally be living there, with the unknowns in Riley’s future. And yeah no, not happening. It’s already really weird, that going back in there is…comfortable. And I HATE that it is…it shouldn’t be right? It should be unnerving, scary, weird, etc. And it is all those feelings, but comfortable has been added to the list. It’s the way that we are used to how those beds feel, we are used to hearing noises and alarms in the middle of the night, we are used to answering the same questions over and over. Hell, guaranteed we know 2/3 of the PICU staff, when it comes to the fellows, attending’s, nurses, RTs, UCs, etc. They all know us, and know WE RUN the show and do what WE say. They understand that we know our kid best, and that his journey is far from a normal one. Now, the residents. They’re learning, I get it. When we first had, Riley admitted this time last year, we didn’t really know how to deal with them, as some wouldn’t really know what to do, some would forget things, some would suggest the wrong thing, etc. But we learned to speak up very quickly, and go over their heads when we need to. It was actually a little hard for me to try and keep my mouth shut during rounds each morning while Riley was there. I wanted to correct so much. I’d usually be the one to talk and end the round, tell them my opinions and how we are going to do things, and ask questions if needed to the attending on (almost every single one of them KNOW Riley well). There were several mornings where they’d conclude the round with “Listen to Mom, we do what she says”. That’s right, now can I just be handed my credentials?!

We have definitely been blessed with a huge goofball the past few weeks, who is OBVIOUSLY feeling better. I don’t know if he’s even coughed since we left. Unquestionably, planned out his slow progress of getting over the flu the way he needed, and he cooperated. If some docs had, had it their way, we would have gone home a whole week prior than we did, and he proved a few days later he wasn’t ready with a scary call to us while we were out to dinner. First one I’ve ever answered, they’ve always called Chris first. Just keeping everyone on their toes, he’s such a stinker about that!

But the adorable, silly, giggly, goofy man that he’s been feeling like lately is just so fun to see and fills my heart. Tickling his belly and fart noises are currently the most hilarious thing in the world to him. I’m curious to see how his alertness continues to improve. Before we went in for our PICU trip, he had just over a week left on a taper of one of his seizure meds, Zonisamide, which he’s been on since August 2014. Yeah, over 2 ½ years. Now that he’s home and doing well, we’ve resumed the taper, and he will officially, and hopefully successfully, be OFF it, as of this Sunday. Most all seizure meds have a side effect of drowsiness, this one especially. So, as we’ve dropped the dosing down, slowly, he’s come to such life, with seizures still under control (THANK YOU Ketogenic diet!). He still has his “space-cadet” moments, sort of in a way I’d think a neurodegenerative disease to reflect in someone with Alzheimer’s, but not as often now. The lack of Zonisamide is lifting a huge fog, we have more of a toddler attitude and personality each day. He’s a little ham, who’s understanding more and more what you’re talking about, especially people and faces. He giggled this morning when I asked him where his Auntie Staci was, and smiled at a picture of her and his buddy Zeke.  Made my day.

The rest of this year (as it’s somehow almost APRIL), is filled with many new things, and changes. Mister man will be four years old in June, which means his DDA eligibility expires then, so I just dropped tons of paperwork in the mail to get the ball rolling with re-upping him, hopefully in the epilepsy category (as he doesn’t have a super specific diagnosis). Hopefully this will open some doors to him as far as Medicaid again, maybe respite care, waivers, etc. We will see. This process has not been easy. And soon we may start the process of planning the specifics on his start of preschool this fall. HOLY SHIT. We held him last year due to his rocky medical status, but if we don’t have HUGE hiccups between now and then, I don’t see why we couldn’t make it work for him. I think he’d enjoy the new experience.

We also have a genetics follow up in June, a few days before his bday. Now, I know there may not be much to discuss, as I have direct access to his doc (that’s right, I’m that mom that doesn’t NEED an appointment). But maybe by then we will. I know at this point we at least want to go over what it looks like, and what all we could do, as future children. I’ve also added Riley to the MyGene2 database through the UW, to help families connect, whether you have a diagnosis or not, and to get his story out there and available to others. Maybe someday, it’ll make a light bulb go off in some one’s head. But at the very least, they are going to re-run his whole exome sequencing on a research level, that may give us a lead, that the clinical sequencing did not. Plus, I just mailed off signed consent to Children’s Hospital of Philadelphia, to be a part of a new study through Dr. Vandever, whom Riley’s SCH Geneticist connected us with. It’s specifically for kids who have a possible undefined Leukodystrophy. It may not help him specifically, but we should try. And if anything, may help kids in the future, as genetics is so fast growing. If you’d like to know more about it, you can visit: https://www.clinicaltrials.gov/ct2/show/NCT03047369?term=Myelin+Disorders+Biorepository&state1=NA%3AUS%3APA&rank=1

For now, it’s getting back in to our day to day routines, and enjoying being home. We have a beautiful little girl who is going through a rough time at Children’s PICU, a lot of what Riley dealt with last spring, and our prayers are with them. So many people empathize with how we live our lives and what Riley goes through, but don’t understand it fully. I know this wonderful family does, and vice versa, and I can’t send enough more good thoughts their way. Please pray for them. Hopefully later this spring she and Riley will get a chance to interact and laugh together, sounds like a great thing to look forward to.