25 days in PICU, day 4 at home

I don’t even know where to start. The past month has flown by, and crawled by at the slowest pace possible. I can’t even fathom Riley’s last hospital trip at the end of July, as it was only for 4 days. At the time, it seemed like forever, and we pushed every day to get things done so he could go home. Take that and times it by six, good god. Thankfully the nice thing about the PICU at Swedish vs the PEDS floor, rooms are way bigger, pretty much to accommodate more of the equipment he needed, but also allowed us to bring in our air mattress after the first week. Beats the cots and hard window seat beds, but still even after that long, and being home for a few days of constant bending over his porta crib, both of our backs are shot. Not to mention the three pounds this monkey gained while being stuck in a hospital bed! But we can’t exactly complain because we weren’t the patient, nor dealing with what Riley is.

Coming home with another car load of medical equipment for the boy, high stress of his oxygen dropping, choking on his sudden increased secretions, possible seizures (despite his cocktail of meds), really makes me appreciative that Margie has been able to stay beyond the weekend to give us each some extra help, and peace of mind. We can’t thank you enough. The stress and nervousness of bringing him home from the hospital when he was born, doesn’t even compare to how we both feel now. Even though I know neither of us are a fan of having an oxygen sensor, and emergency oxygen tank on hand for the boy, we definitely have a sense of relief to have them for if/when needed. We have Riley in our room right now in his porta crib, with the sensor hooked up at night. Little bit of a blessing and a curse. Blessing because we aren’t both lying in bed wide awake at night staring at him all night to make sure he’s breathing ok and not having any issues. Curse, because at times he teeters on the edge of the alarm when asleep and needs to clear his throat, so we get woken up multiple times a night, and about half of them he doesn’t need anything. But what are you going to do, better to know he’s safe.

So gist of his remainder of his hospital stay, he came off his oxygen in his own time and recovered from the pneumonia and rhino virus (aka cold, he just got hit hard with his muscle issues). Of course once one issue starts to retreat, another shows up. He started having seizure like symptoms where he’d either go apnea and then his oxygen would dump, or his oxygen would go down significantly on its own. And if I already started to dive into this already, this exhausted hospital cooped up mommy brain apologizes. Sometimes, he’d bounce back on his own, other times he’d need to be bagged to get his oxygen to recover. Battling that for awhile, it slowly started to get better and better, and we eventually did a sleep study, and yet another EEG. Sleep study showed that there might have been some sort of seizure activity, surprise surprise, but the EEG itself didn’t register any. The movements he had that were pretty tense and twitchy, is nice to know they aren’t seizures. We’ve seen some since being at home, but not to the extent of what we saw while in the hospital.

So now that he’s home, with his ND tube still, the goal is to give him a few weeks to recover and prep himself for going back to the hospital, as a PLANNED visit. We won’t go see all his lovely nurses out of an emergency factor. His cocktails of three different seizure meds are staying the same for now, as they seem to be doing the trick of keeping them at bay. He is growing stronger and less twitchy, battling some increased secretions, but very happy to be home despite the extra cautiousness and added things to our lifestyle. While in the hospital he had a spinal tap, and sent off some more DNA for another panel of genetic testing, this time for developmental delays (last one was specifically for epilepsy and still waiting on 100% answers on that). Hopefully we may have some more light on those results in a few weeks, and shortly after he will have surgery for a GI peg. We have a few different options on the specific surgery for that, but we’re trying to give him the few weeks of healing time, to hopefully be able to make a more informed decision closer to surgery time. Either way, it will get the tube out of his nose, that he now is fully aware of and has amazing movement back to trying and swing his hand up to yank out.

Give it another week…and he’ll have done a very good job at, at least, trying to pull that sucker out, if not actually succeeding. On that topic, the good thing seeing while in the hospital, arriving the day after he had his last dose of ACTH (which by the way both EEGs in the last month showed his IS, are still gone), he’s gained so much movement, strength and energy back. Our wiggle worm with a butt load of personality is shining through will full force, even though he’s not back to feeling 100% after being sick. It gives us so much hope that despite what all his testing shows and tells us what kind of neurological (muscular) disorder he may have, he’s extremely capable of not only bouncing back, but being stubborn in making progress on figuring stuff out on his own and making it happen. He may not sit by himself in the next few months, let alone crawl of walk, but our happy giggly bubbly boy is back and doing everything he can to tell us that he can take what gets thrown at him, and us, will full force (and lots of dinosaur grunting noises)!

Day 12 in PICU

We have certainly been tested in this past week and a half, pushing two weeks. Our patience has been tested (big time), our strength, our love and support for each other and our baby boy, and courage to be there for Riley as strong parents. There have been ups and downs since last weekend, but we might actually be looking at the light at the end of the tunnel now. I feel like I need to knock on some wood writing that, and hope it doesn’t bite me in the butt for saying (typing) it.

Riley was basically sitting at a plateau by the end of last weekend, getting support with his breathing and working through the pneumonia, but couldn’t really wean him from where he was at. Monday we actually went up on the pressure of his oxygen in hopes it would really open up his lungs and clear things out easier and quicker. He worked through that for a few more days and tried lowering to start getting him off, but wasn’t able to very successfully, his body just wasn’t ready. Most perfectly “healthy” kids who get pneumonia may be in the hospital for a few days up to a week, because their muscles are much stronger to fight and start supporting themselves faster without the support they were receiving, compared to Riley who has very weak muscles. So it’s taking him much longer and it’s all trial and error to see what he can handle, when and how fast.

By Tuesday night, he started having very random and drastic drops in his oxygen levels. It happened a handful of times throughout the night, and each time his eyes were half open, rolled up in his head, and nowhere near there and aware. Thankfully each time he came back to and his O2 would rise back up again pretty quickly. It was never down long enough for his face to start turning blue, and he never showed any physical symptoms beyond his eyes. At about 10:30am Wednesday morning, he started seizing (his whole body), for just under a minute. Same look on his face, he wasn’t there. It took about half way through for his oxygen to dump down, but it didn’t get as far down as his episodes during the night, but still really significant. This time his lips did turn blue. Once his body stopped seizing, his numbers came back up and his lips regained some color. I don’t think I have ever been so scared in my life, I just watched my baby have a grand mal seizure, and there was nothing I could do for him during it. Thank god he was in the hospital for it.

I was of course immediately on my phone trying to find someone to come be with me at the hospital, as Chris and virtually everyone was at work. My dad was here within twenty minutes, and was here for his second seizure around noon. Same thing as the first. At that point he was in the process of being hooked up to an EEG and getting an IV put in him for meds. The rest of the day he was just wiped out from the effects of the seizures, and the medicine to treat them, he slept most of the day, which no more seizures, and none since. The EEG was completely clear of any seizure activity, including his IS. So almost two weeks being off the ACTH, and it hasn’t returned. One positive at least.

Since Wednesday’s events, he has slowly become stronger with his coughing, to clear his lungs out better. He’s still been getting his respiratory treatments, and regular suctioning to get all this gunk out of him. He’s starting to sound a lot better and we began the process this weekend of lowering his oxygen pressure and percentage, so he can start supporting himself. We are currently down to a pressure of 12, and 30% oxygen. He’s sleeping away right now holding his O2 number in the high 90s (if not 100 at times). Couldn’t ask for anything better. As long he keeps doing well, his pressure will be lowered by 2 every 6 hours or so. Once he gets to a pressure of 6, hopefully tomorrow, we will pull his ND tube up into his stomach (where a NG tube would be placed), and start his feedings that way to make sure he has no issues with that prior to going home. He’ll go home with an NG tube for a few weeks to rest, and will come back at that point to have a GI peg placed directly into his tummy to his stomach. Since he isn’t super strong with swallowing several weeks into a NG tube, and obviously has had complications on top of it, having a GI peg placed makes the most sense right now. We don’t exactly have a good time frame of when things will be better for him to handle his own food, and doing a swallow study again right now, just isn’t safe.

So fingers crossed he’ll be going home by mid week at least. It’s amazing how LONG 2 weeks feels like being here. I went home to sleep Friday and the little things you don’t think about and how much you miss them. My own shower and bathroom, doing laundry, and being able to pick my child up without being attached to a bunch of wires! This has certainly been a process, and has pushed back some of his testing that was supposed to be done by now. I’ll have to push out his MRI and spinal tap at Children’s again, until the end of the month. That way he has enough time at home to recoup before going under anesthesia. Swallow test is obviously not happening any time soon, but will have to schedule his GI peg placement before being discharged. EEG got completed while here, and despite the two grand mal seizures, no IS or other seizure activity. The thought behind the grand mals is just how sick his body was, the lack and fight for oxygen, caused his body to freak out. Of course every precaution has been taken anyway. He is supposed to see Vlcek on Tuesday for follow up, so either here or there hopefully we will have more direction (not expecting answers), in terms of his muscles. Hoping the genetic testing has at least come back, since he hasn’t quite finished some of his other scheduled tests.

For me, taking care and supporting my child through the good, the bad, the easy, and the hard, is just second nature. Just in the last few weeks, having people say how strong we are, how such great parents we are, is certainly nice to hear. An extra little pick me up through the hard times. Riley’s respiratory therapist today mentioned how surprised he was with how good we are with him, despite what he’s going through and how long he’s been in the PICU. It was interesting to hear, because as a parent, I wouldn’t be any other way. However, he mentioned that lots of parents at this point, if not well before, tend to break down, and not only does it make it harder on the situation, but harder on the child. And I do understand that feeling, at least of wanting to at times. I was certainly at that point on Wednesday experiencing his seizures, but thankfully we have such a great support system, it helped carry me through it and be even stronger for the little monkey, when he needed me most. As hard and trying as the past many many months has been, you do learn a lot about spouse, your family, your friends, our entire support system (no matter how close we are with people), and most importantly yourself. I know I have my moments, whether I can figure out how to express them or not, but I’ve learned how intuitive and second nature, being a caring mother I have become. And to learn and see on a daily basis just how loving and caring the people we have in our lives are, makes it that much easier. Speaking of being an intuitive mom, I can’t see Riley’s face from my current angle, but I know he’s blowing bubbles while watching Curious George and needs his face wiped. The things that make you smile :-)