Riley considered sneaking out, hiding in a bush & calling uber ;-)

(Note: the title has now become a family inside joke, a hospital stay...but not Riley's)

Staring at this blank page not knowing where to start is usually how I begin one of these, today isn’t any different. Good and bad things have happened since I expressed myself a few weeks ago. Most days have been the usual routine, and towards the end of the month we started to get ready for our much needed vacation. Right before we left, Riley had his neurology appointment at Seattle Children’s, with Dr. Saneto, to see if he had any additional ideas to throw into the mix since we’re coming down a dead end road. The appointment went fairly well, he was really easy to talk to and does think that Riley’s underlying diagnosis is either mitochondrial or genetic. There is a bigger chance of mitochondrial because there are more options there than genetic. So that’s what we are starting with. Right now we are waiting to find out if they still have enough tissue from his March muscle biopsy to run the tests. If so, we’ll have results in 6-8 weeks. If not, he’ll need to have another biopsy, hopefully sooner rather than later. We should know if he’ll need surgery again or not within 2 weeks of our appointment, which is this Friday….which means I’ll probably be calling to bug in the next few days. 

(Having fun out with Nana and GiGi)

(Getting ready to watch Super Bowl in Raleigh!)

Riley also has a pediatric geneticist appointment at Children’s in mid April, so between now and then we’ll be working on either eliminating or finding possible mitochondrial answers. We feel good that we’re at least back to the process of moving forward again, after months of looking for answers stalled with complications and hospital visits. With that news, we headed cross country the next morning for Raleigh. Besides the very unfortunate ending of the Superbowl, we had a great time being able to visit with family for the weekend, before heading to Savannah Monday morning. Riley was such the little travel trouper. He did awesome on his first plane rides, car trips, and being walked all over historic towns. Mom and Dad got to walk around Savannah with drinks in hand, bring Riley to his first Catholic church, go on a haunted ghost tour, go to an old plantation, eat yummy southern food, & shop. We then drove up to Charleston on Wednesday and spent time seeing the fort where the Civil War started (and the Atlantic ocean!), shopping, eating, touring museums & an old dungeon, and more. 

(Riley's first Catholic Church, in Savannah)

(Hanging out with dad at the fort, in Charleston)

An unfortunate complication to our trip though. We had arrived back in Raleigh after two nights in Savannah, and the next two in Charleston, Friday evening. Right after having his evening meds, and in the matter of seconds of being moved in my arms from the couch to his chair in the dining room to have a family dinner, Riley had stopped breathing. I went to set him down in his chair, and it was very noticeable that he was grey in the face and not breathing. I rushed him back to the family room, Chris right on my heels. Next thing I knew I was screaming for my aunt to call 911, my cousin started CPR, and I ran as fast as I could upstairs to grab his emergency antiseizure medicine. I don’t know how I managed to not trip going up or down the stairs moving that fast. I’m sure the whole thing lasted no longer than a few minutes, but seeing your child not breathing for that amount of time (especially not already in the hospital where you have oxygen right there and tons of professionals), I was terrified of losing him right there. Right after I gave him his antiseizure med, he slowly started to gain color back and take short shallow breaths. Within the next minute or two, I swear the whole Raleigh fire department and EMTs where in my aunt and uncle’s house. We got him stable and he experienced his second ambulance ride off to the ER.

(Visiting yet another hospital...)

I thank god that this didn’t happen while on an airplane. While visiting a southern town by ourselves without my family. While driving to or from our vacation stops. So many different ways this could have been much worse. Riley was checked out at the local ER, blood ran and determined that he wasn’t coming down with a bug, all his basic lab work looked fine, and he wasn’t dehydrated. Since he was deprived oxygen for a good chunk of time, it was safest to have him transferred to the Children’s hospital to try and determine why this happened and gets him stable further. By 3am, we were finally there and getting settled. At 5:45am, his alarms where going off, and I got up to check on him, and sure enough he was grey in the face again. I yanked the call button out of the wall (so it would continue to alarm at the nurses’ desk), and threw open the door and got everyone running. This time it seemed more apparent that it might have been a seizure. Friday evening it wasn’t obvious because the big symptom was that he just was not breathing. He wasn’t doing any obvious seizure movements like we’ve seen in the past, but his jaw had been clenched (I couldn’t get into his mouth well to clear out secretions to eliminate that as a problem for not breathing). The episode early the next morning while in the hospital, his eyes were rolled up and back, like we’ve seen in the past. He would not focus on me while calling his name, like we’ve seen in the past. In addition he wasn’t breathing for a short time, but came around on his own within a minute without any assistance. After that minute he was there and aware, until he decided that just tuckered him out and went back to sleep. 

(Passed out in my arms after being discharged)

Needless to say, now that it was Saturday morning, and our flight home was Sunday morning, we did not expect to be coming home yesterday. We expected to probably still be in the hospital as of today, if not further into the week. Thankfully, doctors had their butts in gear, especially for a weekend. He was checked out and they contacted Vlcek to determine the best course of action, and if Riley was going to be safe enough to fly home. After collaboration and consensus, with Riley seeming like he was back to his normal base line that morning, he was given a bolus (extra dose) of one of his antiseizure meds early Saturday afternoon to try and help put his body back on track, and raised that dosage of his same med, at its usual times. Even though we don’t know with 100% certainty that these two episodes were seizures, the likelihood is very high. All docs agreed that even though he’s not sick, his body has just gotten worn out from all the traveling, different schedule, less sleep, etc. So like when sick, his seizure threshold goes down, and is more likely to have one. Same goes in this case, and that’s probably how we got to this point. He came back around real fast to a normal base line, and it was decided that he was no less safe to fly home than he was to fly out to begin with, and he was discharged Saturday afternoon. 

(Reaction when touching down in Seattle!)

We were both pretty nervous flying with him so soon after this, but were happy that he was able to relax and rest for a day and night in Raleigh before doing so. We also let our flight attendants know what he had just gone through, so they would be prepared if all the sudden we were jumping up for help on the flight. But he did great, even better than flying out a week earlier. Slept 75% of the time, and has been a sleepyhead today as well. He was pretty darn happy to be home last night. Tons of smiles and giggles, helps he slept most of the day too. Going to be taking things easy in the coming days and weeks, let his body rest and recharge. He’ll be seeing Vlcek by the end of the month, and may or may not be having another biopsy surgery in that time frame as well. 

(Happy to be home last night)

We will not let another bump in Riley’s road take away from the fact that we had and enjoyed most of our much needed vacation. Yes, his ordeal was very scary and not the best ending, but we can’t all live cooped up never doing anything because something MIGHT happen. You never know if something bad will happen, or not. Especially with not having his diagnosis, things are just unknown. He could present some other random symptom next week that we could never even think of. Until we know exactly what’s going on under the surface, we will all live our lives with a positive outlook, and enjoy our time together, and the memories we make. And we certainly came home with many of those from our vacation. 

(Enjoying his family vacation!)

This is how I feel

I’ve never been very good at communication. People ask me how I’m doing and without even thinking it’s an automatic response of “OK”, “Fine”, etc. I don’t like making myself vulnerable, expressing how I’m actually doing (or feeling). Although, when responses are like “I don’t know”, sometimes I just don’t because I can’t even figure it out in my own head. Ever since I was a little girl, I’ve always put others first. I’d rather see the ones I love happy, than myself. Seeing them happy, makes me happy. It’s the same thing now being a mother. I put my child and my family first, and sometimes I don’t know how to take care of myself, process, or deal with things. Having toddler, going on 19 months, who has an undiagnosed neurological disorder, with other medical complications, doesn’t make it one bit easier. 

I thank god for this beautiful little man every day. When people tell you that they can’t remember their life before kids, believe them. I truly can’t. I have tons of wonderful memories of high school, college, becoming an adult and marrying my best friend, sure. But those little things like getting up and not having to worry about a disgusting poop that your kid has been laying in all night, being able to leave the house when you want without remembering to pack a million things that you MIGHT need while out for a total of two hours, going to the movies on a whim….yeah those are the things I do not remember. Because this amazing new love of your life has taken over, and that’s all that matters any more. That territory, and what our family has been going through on top of it, makes it hard to truly express and let people understand how you feel sometimes.

Like, I’ll fully admit I’m tying like I would write things in a journal, having the intention, and hoping to have the follow through, to publish to the blog. I’m sitting in bed while my child has his last meal of the day pumped into his stomach. He’s grunting, rolling around, and still wide awake, but has no problem hanging out in bed having his meal medically inserted through tubes into his tummy. Lord knows he misses the taste of food though (hopefully someday soon, slowly). I admit that I have a glass of whiskey sitting on my nightstand and I actually took the night off from the gym, because it has just been one of those days. Sometimes I feel like people don’t understand what it’s like to be a mom to a kid that has special needs, not even knowing the diagnoses of what makes up those needs! Comments I get from strangers ever damn time I leave the house with him, I bite my lip and just nod along, in no way feeling like I should be explaining personal things that are going on. Like how “cute he is sleeping”, when he is totally awake! Like asking how old he is and being shocked that he’s only a year and a half, and proceed into has he started walking and saying tons of words. People just don’t get that not all kids are the same, and I can’t even be like….”He has this ________.”, and they’d just get it. 

It is infuriating, stressful, exhausting, and overall worrisome when you have no idea what his future looks like, what our future looks like, how to figure out for someone to properly take care of him as I start looking to return to work, not knowing if another shoe is gonna drop and a new symptom of whatever is going to randomly appear. If whatever it is, is genetic, I HATE that they don’t consider this kind of thing “urgent”, to be able to get in to see a specialist sooner, to have insurance say “no big deal, we’ll cover this”, because whatever it is, is done, there is no changing it and more than likely no treatment. Ok, well fine…but it could certainly tell us a lot of what to expect, how to plan our lives, and how to better care for the most important thing in our lives. Sometimes, a mom just wants answers and for others to understand that days aren’t always perfect (despite the usual kid issues). You have days like today where all I want to do is break down, throw things and yell and scream at doctors to help and get their asses in line. But then the cure for days like that, are many snuggles with this little boy, kisses (or sometimes bites as he has way too many teeth coming in at once), and then a glass of whiskey in bed ranting about the crappy day. Cheers to the “normalcy” we’ve had over the past few months, the hope it continues using that down time to make PROGRESS figuring shit out, sooner rather than later.

BTW, I’m sure I’m speaking very well on a father’s thoughts and emotions as well. I don’t think I could get any luckier than this mom is, having a wonderful, strong, and supportive partner in crime at her side ;-)

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.