Home for the Holidays

So much for a quick update in a few days…oops? Well take that I didn’t update quickly as a good sign! Means we’ve been home getting back into routines and happy normalcy. We spent Thanksgiving at home as a family, and Uncle Nicholas came over for dinner and to watch the Hawks play in San Fran. Since then it’s been days filled of work, house work, PT, laughter, Christmas shopping, and quality friends and family time. Been very nice to keep this kind of routine, with a healthy and happy boy. He’s still been doing PT once a week and making progress. He was constantly favoring rolling towards his left, but will go right now as well. He can easily roll onto his tummy (either direction), still can’t quite figure out how to get his lower arm out from under his chest though. Once he has some more upper body strength that will be a breeze. We’ve noticed on occasion, whether on his back or tummy, he’s slowly figuring out how to scoot himself backwards. Think he’s trying to take after his Uncle Brad on that one. The strength in his heavy head and neck is slowly coming back as well, slowly. He still wears his “scarf” in his car seat, which he’s grown to hate and try and pull off every time. It’s to help keep his chin out of his chest. But on occasion, he does well and proves he doesn’t need it. His head doesn’t always immediately flop when seated upright. This will take more time, but he’s working well on it. The cysts on his eyes are much much smaller, and every day he opens his olive green eyes more and more. Still may be a good month or two before they are completely gone, but compare them to this time last month, and it’s a HUGE difference!

After Riley’s last EEG shortly before Thanksgiving, he and I headed over to his neuro’s office after being discharged. As always, a love/hate relationship with that office. The good news, this EEG was MUCH better than the last (week long while in the PICU). He didn’t have any sort of seizure or spasm, and the hypsarrathemia (background abnormalities) are much less. With currently being on four different antiseizure medications, he said that it’s not surprising that there are still some, but not a lot. He’s always going to be prone to seizures, so there is a pretty good chance that he’s never going to have the perfect EEG reading either. Still on track with lowering his most recent med, to have him off of it by mid-January. Go down again in dosage this Sunday! This might be one reason we’re seeing more awareness, energy and smiles! I love it…so much. 

The frustrating news, we have pretty much hit the end of the road when it comes to diagnostic testing. This means, there is a very good chance that the underlying problem, is genetic. This is where my heart sank, because not only is finding the right answer going to be difficult, it just also adds so much more uncertainty. One year later (as of yesterday), still feel like we’ve gotten nowhere. Riley has gone from 6 months, to 18 months old, and the past year has just been one obstacle after the next, causing not much in the way of him progressing. And that’s a huge developmental time to where he, in theory, should. Sometimes it’s still hard to swallow. I see a kid around his age, or even way younger, at the grocery store, and I think, “Riley should have been doing this a long time ago”. But then he grabs my arm, like right now, and those thoughts melt away because he is one strong and stubborn kid, and will get there when he can. 

So as of now, the plan is to keep him healthy and progressing well for the next few months, and nowhere near a hospital (unless he has a scheduled doctor appointment). At the end of February, we will meet again with neuro, see what kind of progress he has made, and reassess. As of right now, the only testing that he can think of to do next, would be a full genetic/chromosomal panel, testing every gene and chromosome in his body, to give us a specific diagnosis. Problems: there is only about 60% chance of it telling us what’s going on. We could go through the time and money, for a 40% chance of getting nothing. Also, getting insurance to cover it. Insurance companies consider anything genetic related, an optional test, we choose to do it, it’s not necessary. Well we’re not going through this for shits and giggles, we have a true necessity. We would like to know what Riley’s future may look like, what he may need assistance with now or in the future, things that will impact his and our lives. Not to mention, the % of chance of how it could affect a sibling, if/when we get to that point. So at this point, we have no idea if insurance would cover testing like this, or if it’d be out of pocket for us (looking at $15-16k). Yes, he has had two genetic panels run (epileptic and developmental delay), and both insurance has covered, after months of open claims and I’m sure back and forth for our insurance company and doctor’s office to make them cover it for medical necessity. This would be a way bigger panel though, as it would cover his whole body, so who knows how they’d make a final call on that one.

For now, we’re just focused on keeping this adorable little monkey health, happy and moving. He’s making progress in his own strides, and had many opinions on everything. Come the beginning of the year, he’ll start speech therapy as well, since the lovely summer steroids took away most of his babbling progress as well. New adventures await every week with this kid, and he’s enjoying keeping us on our toes. Happy to be spending Christmas next week traveling (for the first time I think since August!) down to Vancouver and Hood River, with both sets of grandparents, and great-grands, aunts, uncles and cousins on his daddy’s side too. Time to relax and be thankful for the strength our recent experiences have given us. Now I just need a glass of bubbly with floating berries to toast and cheers you all! Thank you so much for all the love and support this past year. Have a very Merry Christmas and a Happy New Year! Bring on a much better 2015!

Back Again...ANOTHER EEG

When we followed up with Vlcek after Riley was discharged from the PICU for the second time, about a month ago, I knew that another (many more I’m sure) EEG was in his near future, let alone what other tests/procedures we come up with that may need to be done. When we met with him shortly before Halloween and he said that we were going to increase one of his antiseizures, and decrease the most recent one (to slowly take him off it), we talked about how Riley would need another EEG sometime soon to get an idea if adjusting those meds was making a difference compared to how his last (week long) EEG looked. Up until yesterday, it was no big deal. Then the day prior to coming in, it was reality again of having to come back to the hospital, of continuing to poke and prod to try and find some answers. And I’m just starting to dread that, and getting tired of it. But the fact that it’s almost been a year since we started on this journey with the monkey, I think I’m allowed to feel that.

It’s hard to imagine that on the 17^th, it will have been a year since we met with Vlcek for the first time, and it became even more apparent that there is something going on, that Riley has some sort of neurological/neuromuscular disorder. It’s certainly been a very long year, but has also flown by so incredibly fast, it’s insane. Started out with his first MRI, which was clean. He started PT once a week at the beginning of the year, and slowly made great improvements and strides in both his strength and movement. Then went on to do a muscle biopsy in March, which showed Type 1 Fiber Disproportion. Ok, great…but that could still just lead us in many different directions, it’s not a diagnosis. Then in April, he started getting the Infantile Spasms and that became the focus of controlling those with meds. This started our many of EEGs, a summer of a big steroid that completely wiped out all his work in PT, and put his muscles back at square one. Next, he suddenly started having swallowing issues in July, which quickly led to a NG feeding tube, followed not long by landing in the PICU for the first time with pneumonia. Then the ND tube came, along with issues contributed to the pneumonia (grand mal seizures, harder breathing, O2 drops, etc etc). Got to go home for a total of 10 days, with more medical equipment accumulated than we would ever want, and came right back due to still the swallowing control of his own secretions, since he still had the ND tube. That PICU stay was almost as long as the first, where he had his GI surgery, weeklong EEG, new antiseizure med, and a much bigger boy. Being home a little over a month has been amazing, and I can only hope that we have lots of time like that in the near future, and today’s EEG is a quick visit. We are still waiting on genetic testing results, and after we have those, try and figure out the next step and direction in determining an overall diagnosis. 

Besides sitting here having him go through whatever number EEG we are currently on, most everything else at the moment, he seems to be doing well with. All his feeds and secretion control have been awesome since surgery, and he’ll have a follow up with his GI doc and surgeon early next year to change out his button and set a course as far as how we want to progress with his feeds. Need to determine out of all of his doctors, who’s going to be the one to make the call, when it’s determined safe again to swallow by mouth again, to slowly start working on that, see how it goes, then finally do another swallow study to see what is really going on. Just don’t want to jump the gun on that too too soon, so we don’t risk any aspiration pneumonia, even though he had this esophagus wrapped. My guess we’re looking at around the beginning of the year, when we see them again. He has developed little cysts on each of his eye lids. Can happen from the glands in the area becoming clogged. Other than surgery, which at this point we are not doing, they generally go away on their own, slowly. They have gotten much better, aren’t as big or as swollen any more, and are draining, so hopefully by Christmas he’ll be able to open those peepers better! And not have ever stranger I see comment on how he’s sleeping, when he’s not at all. I’m not getting irritated by that at all…. ;-) Beyond that, it’s just working on adjusting his antiseizure meds, and charting a new course of action for a diagnosis. 

(Right now with the EEG hooked up and his monkey hat to disguise it!)

(Playing around in the toy store after his haircut last Thursday...a little Dennis the Menace!)

Reflecting back on how the past year has gone, Riley is showing awesome signs of an exciting and promising upcoming future. He’s back to doing PT once a week, and is moving constantly, and finding coordination between his limbs, head and core, etc. He actually loves being on his tummy now, and during PT last Wednesday, he shocked us by immediately bring his elbows and arms in, moved his legs in coordination with each other and his arms, and showed signs of trying to push himself up so he could crawl away!! If he just had the strength in his head/neck and core to get the top part of his body off the ground, he would have done it! If he keeps progressing in this way, I think he’ll be trying to army crawl before he has full strength in his core to sit by himself. That’s going to be my goal for him for his second birthday. For holiday time next year, it would be great to see the strength in his core to sit alone and starting to stand or pull himself up to get towards walking. I’ve accepted the fact that he’s not like other kids his own age, and may not be for some time, possibly not walking until he’s 2 or 3 years old. But as long as he can keep himself healthy, and we continue to get closer to a diagnosis to help care for him even more, I’m happy with that. He’s just as stubborn as both his Mommy and Daddy, if not more. You can tell by his facial expressions and noises when he wants to do something by himself, which he just can’t. Thinking about it, that’s usually around when I’m getting punched in the face while carrying him, his frustration coming through in ways that he can show it. 

(Coordination with movement of hands and lifting his legs, and of course rolls over right after!)

(Poppa Sarge and little sarge passed out)

Hopefully we’ll have some good news on his EEG in the morning, and maybe some sort of update on all the genetic stuff we’ve now been waiting two months on…..will try and do a quick update in a few days when I have more info!

"Normalcy" never felt so good

The things you wouldn't think you'd miss and couldn't wait to do again; laundry, the dishes, going through old crap to give to goodwill...feels so good right now. We have been home and back into a "routine" now for almost 2 weeks (tomorrow). Despite a quick urgent care visit (that turned into an ER visit due to R's massive history) this morning, there is not indication of being back in the hospital until at least the end of the month. Let me start from the beginning of returning home and all questions shall be answered.

Finding that routine and becoming comfortable taking care of your kid 24/7 without doctors coming in and out and lots of nurse help, is well, interesting. We both of course know how to, very well and are more than capable, but you still get that slight nervous feeling in the beginning. Like when you bring them home from the hospital for the very first time and that hesitation of unknown. We know a lot when it comes to this kiddo, but each time coming home from the hospital always has something knew to just get use to and find the groove with. This time it was some additional meds, and doing all his feeds through the button in his tummy. The concept isn't any different than the NG or ND tubes, but still something to get in the swing with. 

Riley has been doing awesome at home. He loves being able to put his hands all over his face and not have a feeding tube (or oxygen!) there to yank onto. Finding a normal sleep schedule has been a bit of a challenge because most nights he doesn't want to go to bed until late, then ends up tired the next mornings. For the most part he's out a good chunk of the night, letting us have mostly normal sleep. Just a work in progress as he's getting older and doesn't want to nap much, unless he's just that tired. He's certainly becoming a typical toddler, in his own way. Constantly making noses, wiggling around, starting to spin, slamming his legs, punching me in the face, wanting attention, etc etc. he just can't run away from us yet, or yell no and defy us that way. Doesn't mean he doesn't try! 

First week home was free of doctors, and nice to find our routine and just be home. This last week he had a couple follow up appointments, thankfully nothing big coming from either. He saw a ear/nose/throat doc on Tuesday to make sure there isn't anything structurally that could explain his random O2 drops in the hospital, everything is fine there. Saw Vlcek on Thursday and still no genetic results, basically waiting on those answers to determine the next course of action in a diagnosis. We did go over his week long EEG and how he has some hypsarrethmia coming back. Rather than jumping right into the kinogenic diet, like Simon thought, Vlcek wants to adjust two (of four) dosages of antiseizure meds. So we will give that this month to adjust in his system, then do another EEG and see if that made a difference. Ideally it will, and the diet wouldn't be on the table any more. We will see. Said that his mri did show the abnormalities from the sabril med, going away. But there are new abnormalities that are not from that. Said some of his brain cells aren't projecting the way they should, and that affects brain and nervous system functions. But right now, that's all it tells us. He will need another mri in the future and it will be used to help diagnose him, but that on its own doesn't say what exactly is going on. Let's get as much shit figured out this year before insurance resets!!

Riley had a good time at gram and poppa's as a little wild thing for Halloween. And will continue to enjoy normal family things until returning to the hospital for a PLANNED visit for another EEG at the end of the month sometime. Until then, it's working hard at PT, giving smiles and smooches, and enjoying his own home, and dog! 

Note: the urgent care trip today that turned to er visit was just for his left eye. It's been puffy lately and woke up this morning to it basically swollen shut (he had been laying in a big pile of drool, silly man). Just a bacterial infection that daddy is picking up antibiotics for as mommy works out and blogs.

PICU round 2

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 30^th, 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. 

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 :-)