Raising support

http://www.gofundme.com/rileyjamesroberts

Riley has officially passed his "10 days at home then UH Oh" mark. He came home from the PICU on 3/14, it's now 3/25, and he's doing well. As far as we can tell, he hasn't had anymore apnec seizures since the first few days home. Even then, it was only a few we saw and only stopped breathing for a few seconds, just barely long enough to sort of see his chest not moving, but not long enough to need to do anything about it. Besides those he's had a handful of shakey repetitive seizures, or what we assume to be, but nothing we've caught in the last week. Have been sticking to a strict timeline for his feeds, to keep the ketones up in his body, and each evening we test (through a urine soaked cotton ball in his diaper) they've been at the highest level possible for over the past week! He is pretty shaky on a more consistent basis, but those movements, as far as we know in the past, haven't registered on an EEG. And he's totally there and aware during them, so the hope is that they're more muscle related than seizure related. One more thing to keep an eye on and pay attention too though. 

Riley will have a follow up with his dietician and ANRP at the end of April and see how his body is doing with the diet and see if any changes need to be made. At that point I'm sure we will discuss when his next needed EEG might be needed, for further confirmation. Between now and then, we are currently trying to get another appointment with the neuro at Childrens to discuss his mito test results, the need for another MRI (that seems to have followed by the way side during a break at home and new issues), and genetic options. Hopefully that will be scheduled shortly for as soon as possible. He also already has his genetics appointment at Childrens scheduled for the 20th. I'm sure this will be the point of discussing doing the full gene/chromosomal panel. We can hope and push for answers by his 2nd birthday, but after a year and a half of searching for answers, not holding our breath for any of these seemingly last steps to go fast. 

Beyond the boys medical world, he's loving being home. He's started back to PT on a weekly basis, and may not be doing the big things yet, but his alertness is way better than it use to be (I'm sure lowering one of his meds helped). He's started planting his feet flat on the floor, one at a time, while laying with the knee bent. In the normal world, that's no biggie, in Riley world it's huge for his coordination and muscles. 

With upcoming genetics testing that insurance doesn't cover, and his care while searching for answers, we've started a Go Fund Me, for any generous support to go strictly towards his medical expenses and care. We've always been so humbled and appreciated by the love and support we have all received. We hope that one day in the somewhat near future, we will have answers we have been looking for to better care for and plan our little monkeys bright future.

http://www.gofundme.com/rileyjamesroberts

Fighting to find control

Apneic seizures. Let me tell you can stop you from breathing when you see your child experience them, over…and over….and over. After doing so well for many months away from the hospital, the first seizure back east was like hitting a brick wall. Basically my exact thoughts as he had a few more after arriving home, spent two nights in the hospital doing absolutely nothing of concern, and then being discharged and going home to have two more that very night, WTF. And I’m being as PC by abbreviating that. Tinkering with his meds, he seemed to get control of them, and we all started to breathe a little easier as the days went on. 10 days later (what is with him and that number?! How many days he went between PICU visits over the fall), they started, again.

("Oh no!!")

("I'm fine?! What's the big deal??")

At first it was just one random one, on a very early Tuesday morning. After that, Riley would say “What’s all the fuss about? I’m fine!” Maybe not in so many words, but we’re awesome mind readers. All seemed OK again. Until Thursday morning, one happened. Two happened a few hours later. Three happened later that afternoon. Spoke with the on call doc and made a med adjustment. Four happened in the middle of the night. Five happened early Friday morning. By that point I knew he should go into the hospital, but going through the ER for seizures (something that more than likely isn’t happening when you’re in the ER, so stuff just moves even slower), on top of his medical mountain history, wasn’t going to be my first choice. I called around to all his docs that morning, and got the consensus that they were in agreement with me, and got him an urgent admittance, and off we went (last Friday 2/27). 

("Not the hat...")

Of course admitted up on PEDS again, and he was being a little angel all over again. We were so afraid we’d just repeat what we went through less two weeks prior. Thankfully this time, docs also agreed that he should have another EEG to try and figure all this out. Friday was spent hanging out with “the hat” on, not showing anything. Then he finally had two Saturday morning, and told him he wasn’t allowed any more now that we had some recorded, got the info, stop now. Boy did his body not get that message. Total freak out mode happened just before 5pm Saturday. The seizure started, and did not stop. Multiple minutes, having to get bagged, emergency IV for an emergency antiseizure med, code called, probably the entire PEDS floor crammed in our room. All happening at the slowest pace possible while you stand back trying to get a glimpse of your child through all these people. Heart racing and tears streaming down your cheeks. I wish I could say I’ve never experienced this before, and didn’t again last week. Just “saying” it, makes my heart race now. Explaining that fear is just impossible. 

Thankfully, after the IV and med where in, he came around, what seemed like hours later. Rushed down to the PICU after that, so he could have more intense care, and all his favorite nurses. Just settling in, and another came. And another. And another. And another. And you don’t want me to repeat that however many times that kept going, because it was absolutely pointless to count. Over the span of about three and a half hours, he had an apneic seizure about every three to eight minutes, ranging anywhere from 20  to 60ish seconds each, had multiple emergency antiseizure meds, a few bolus doses of current meds, and they just wouldn’t stop. At this point, in order to stop the seizures and protect his airway, he was put on a ventilator and given a high dose of an emergency antiseizure med, through an IV, running continuously. It’s amazing how quickly you can go from “no biggie mom!”, to “Oh shit”. 

Over the next few days, he was slowly weaned down on the IV med dose, to where we got to the point of being able to safely extubate himTuesday afternoon. You can probably imagine the very coarse cries and whines he had after that. His throat was certainly sore for a while, and may very well still is. The EEG stayed on through all of this to track how things were unfolding, and stayed on after he stopped the IV med. Of course, as soon as he was completely off, you could start to see the EEG bouncing around again. He wasn’t constantly having seizures, but his hypsarrethmia was back in full swing, which means his seizures weren’t far behind. It was decided on Wednesday that after so much med tinkering, we needed to go another direction. Riley started the Ketogenic diet Thursday morning. For those of you who have no idea what in the world I’m talking about: 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. After being extubated, he had about one very small apneic seizure each day, for a few days. He is slowly going up to fats in full swing, but the hope is this works well for him. One good thing about trying this now, is that Riley has his tummy button, so it’s just a matter of mixing his formula correctly. We do not have to plan out super fatty meals for him, caked in butter and oil. There is the possibility that he’ll be on this for a few years, if it works, so we could get to that point some day. 

Of course, nothing is ever easy for this child. Totally forcing his body into a weird and new food routine that he has to adjust to, he’s now sick with some bug. Still waiting on all the blood work and panels to come back, nothing is ever quick in a hospital, let alone on a weekend. But he’s been battling a decent fever all weekend, with some congestion, coughing, heat rash, and on top of it, constipation. Basically he’s miserable. Getting Tylenol around the clock, and doing everything we can to keep him comfy and rested, so he can kick this as soon as possible, so he can go home and continue to rest and recharge. Of course it always depends on him, but hopefully looking at sleeping in our own beds by mid week. I never want to be overly optimistic here, because it always just ends in disappointment. Focusing on keeping him comfy right now, to allow his body to fight the crud and adjust to the diet to stay seizure free (and has been since Friday morning). 

Having a child with handfuls of medical issues and special needs, is no easy task. I’ve had so many people praise me for how strong I am and us as a family. I can tell you that all the love and support from our family, friends, and even those we don’t get a chance to talk with much, helps us significantly be able to be strong for Riley, and each other. People say things like, “I can’t imagine”, “How are you so strong”, “How are you keeping it together”. Honestly, not only do I not have a choice, in more ways than one, but I also don’t know how I wouldn’t be. This adorable little boy is the reason I do anything, he is my life. That perpetual love, fuels everything. Fuels my body to endure the sleepless nights in the hospital worrying or caring for him. Fuels my mind to make decisions, and think about really anything. Fuels my emotions to not take over when faced with those terrifying situations but to also thrive to keep everything together and moving forward. And I can also honestly say, that I could never be able to do or handle any of this without my amazing partner in crime, the best dad Riley could ask for. We’ve grown together, learned how to lean on each other, communicate through good and bad, and give as much love as possible to the greatest boy ever.  Yes, obviously by where I physically sit right now, he has way more baggage than your average toddler, but neither of us could imagine our lives without him. His smiles just make it all OK.