In Which Connor's Doing Well

Connor was moved up to the pediatric floor today!  He's doing much, much better.  We had a rough couple of days; the night before last was especially horrible.  He was having some seizures and GI track issues, and in quite a bit of pain.  Thankfully things seem to be evening out now, and he's been seizure-free for nearly two days now.  Hopefully his GI issues will be straightened out tonight, and we'll be able to get him eating tomorrow.  Once that happens, he'll be able to come home!

He'll be on quite a bit of pain medication, and he still has a lot of swelling and bruising from the surgery.  His surgical sites still look pretty good, though.  He won't have his follow-up appointment with orthopedics until six weeks post-operation, so he won't be out of the brace until then.  It's been interesting learning how to manage the brace, since it makes moving the kiddo pretty awkward.  We've got a system down now though, and we're able to shift him without causing him much pain at all.  At the moment we mostly double team things, but hopefully by the time Jeremy leaves, I'll have figured out how to do everything on my own.  We're working on getting a sling for Connor's lift that will work well with the brace.  That should help me out a lot.

In addition to Connor's improvement, something else good happened: Loki came back!  He showed up the night before last on the doorstep four days after he went missing-- filthy, dehydrated, a few pounds lighter and extremely hungry.  I suspect he might have gotten stuck in somebody's crawlspace and it took him a few days to get out.  He frantically demanded petting, walked stiff-legged to his food bowl, ate the entire thing, drank water for about five minutes, and then basically conked out in the middle of the kitchen floor.  I'm so, so glad he's back; I was pretty sure after the first couple of days that we would be seeing him again.  He's shown zero interest so far in escaping back outside, so maybe he's learned his lesson.  I wouldn't count on it, though-- he's our troublemaker.  Crazy cat.

~Jess

In Which Connor Has Surgery

Today was the big day for Connor's surgery.  We had to get the little guy up at 4:30 in the morning, which was not particularly fun.  None of us had slept very well, not only because of the surgery but also because we were worried about our beloved cat, Loki, who had made a bid for freedom the night before and, as of this writing, is still somewhere at-large in our coyote-infested neighborhood.  I really hope he turns up soon.

Anyway, we arrived at the hospital around six in the morning, met with the surgical team, and Jeremy walked Connor back for his surgery around 8:30 or so.  The anesthesiologist and surgeon carefully explained what was going to happen to Connor via demonstration on Hospital Monkey.  As a general rule, Connor does much better for procedures if he understands what's going to happen, and this was no exception.  He was quiet and interested in the whole process, and he didn't fight the mask when they put him under.  We've been discussing the surgery with him for a couple of weeks, and I think that helped as well.  Jer met me back in the pre-op room, and we prepared for our long, long wait.  We were told to expect the surgery would take at least six hours.

The OR nurse was going to be updating Jeremy and I by cell phone, and we didn't get any reception in the surgical waiting room, so we couldn't stay there.  To tell you the truth I was a bit relieved by this anyway, as surgical waiting rooms are pretty dang depressing.  We popped our heads in and even though there were probably twenty people in there, the room was absolutely silent.  Everyone looked like they were having one of the worst days of their lives.  While Jeremy and I were not having a particularly fun day, there was no way we were going to sit in a room for six hours and not say anything to each other.

So instead we ate breakfast and then wandered around outside the hospital for a while, amusing ourselves by watching various small children try and sneak as close as possible to the swan hanging out on the lawn next to the pond before their mothers realized what they were up to and yanked them back out of reach.  Then after lunch, we read on a bench for a while in a tucked away corner of the garden with some soft music playing on the iPad.  It was a much less stressful way to spend the time, and even if we were still anxious about the little guy's surgery, we were at least not shut up and sedentary.  I find that when I'm worried, getting moving helps me out quite a bit, and it was a beautiful, sunny day.

So the kiddo's surgery went smoothly, and he got back to his room in the PICU around three in the afternoon.  The doctor repaired Connor's right hip socket, and readjusted the angle that both the little guy's femurs entered his hips.  Because the doctor needed to saw completely through both of Connor's femurs to do this, our boy will have a pretty long, painful recovery.  Right now he's resting completely comfortably though, as he has an epidural in.  They'll probably keep that in place for a day or two, and then they'll transition over to other pain medication and move Connor to the pediatric floor.

Jeremy and I will be switching off who spends the night at the hospital, as only one of us is allowed to stay and of course we have another kid who needs attention too!  Jer is spending the first night at the hospital, and it will be my turn tomorrow.  When I last checked in, Connor was still asleep but had woken up for a while in the evening.  He was a bit groggy and confused, but didn't seem to be in a lot of pain.  He has on some silver-coated bandages to help prevent infection, and he's in the brace he'll wear for the next four-six weeks, which spreads his legs out wide and elevates them a bit.  I was actually surprised by how good he looked; I'd expected a lot more swelling, but there was very little of that and he wasn't even very pale.  They didn't even have to give him a blood transfusion, which is pretty amazing for a six hour surgery!

Eden had the chance to pop in and see him too, which I think was pretty important.  She was very worried about her brother all day-- she even called from school to double-check on him during her lunch-- and so it was really great that they allowed her to come back and see for herself that he was all right.  She's a pretty fantastic big sister.

I'm so glad that things went well, and hope the little guy has a smooth recovery.  He should be spending the next five to seven days in the hospital and we have no WIFI reception there, so I'll keep you all posted as often as I can.

I'm so glad that's done and over with!

~Jess

In Which We Turn Up The Drama To Eleven

So it turns out that instead of driving up the coast of California with Jeremy for our ten year anniversary, the two of us will be spending our vacation in the ICU with Connor while he recovers from major pelvic surgery.  This has not exactly been the best week ever.  Bear with me; a lot has happened so this will be a long post.

I got a phone call from the school Wednesday; they thought Connor was throwing up blood again.  I missed the phone call because I was taking a shower, so by the time I got down there he was asleep.  He woke up on the way out the door and by the time we'd been in the car five minutes he was incredibly pale, shaking and crying, which is an indication in our world that something is really wrong.  So I drove him to the ER.

He threw up again in the parking lot, and one more time in the ER bed, so his stomach was pretty empty by the time they took a sample.  What came up was pretty dark brown, so it was evident that even if he had been bleeding he was done now, but since he was doing his very best to blend into the hospital sheets and didn't really want to wake up, they were pretty concerned in triage and they decided to admit him and do a scope the next day.

They started an IV, gave him something for nausea and another medication to help protect his stomach if he did have something going on in there, and his color started coming back.  He crashed hard and slept through the whole night, though his IV seemed to be having some trouble.  Since it kept beeping "occlusion," the nurse put him in an arm board and wrapped it up from wrist to most of the way up his shoulder.  This proved to be an unfortunate decision.

Sometime during the night the IV blew and began dripping saline directly into the muscle of Connor's arm.  Since he was asleep the whole night I was asleep too, and didn't catch it.  The nurse didn't unwrap his arm to check it.  Nobody caught it, in fact, until we were downstairs the next morning for his endoscopy and they'd already injected the Propofol, which not only obviously didn't work as it had been injected into the muscle of his arm rather than the vein, but also probably burned like the fire of 1,000 suns.  They unwrapped him at that point and discovered the skin was so swollen Connor was purple at the armpit, he couldn't bend at the elbow and the whole arm looked like an overstuffed sausage.  The skin was stretched so tightly that when they took the IV tape off the top layer of skin peeled off with it in strips, leaving long swaths of open, raw flesh that looked like burns.  It took two days for his arm to finally return to normal size, and the whole inside of his elbow is currently a weepy, blistery mess.  Poor little guy.

The good news was that the scope didn't show any evidence of ulcers or anywhere he might have been bleeding, leaving the whole incident a mystery.  However, they did discover that the entire inside of his esophagus was swollen and lined with deep furrows, which is indicative of a condition called Eosinophilic Esophagitis (EoE).  It's a pretty newly discovered condition so there's not a lot out there about it, but you can find a basic explanation for it here.  We're waiting on the biopsy to come back before an official diagnosis, which should take about two weeks, but in the meantime they've started Connor on Prevacid, and they'll be doing another scope in a couple of months to see if that helps.  If the Prevacid doesn't improve matters, we'll play the find-the-allergy game until we can come up with a formula (most EoE is food allergy-related) that won't exacerbate the issue.  I'm glad they caught this; it's possible that this has been the cause of Connor's dysphagia and if we can get it under control he might be able to eat more by mouth!  That would be pretty cool.

Anyway, so we'd had an orthopedic appointment on Thursday that I really wanted Connor to keep, so I told anyone who would listen about it until word got back to our fantastic pediatric ortho doc, who told them just to send us down some time that afternoon and he'd fit us in whenever we came.  Connor's PT and I had been increasingly concerned about the little guy's scoliosis, as his curve seemed to be progressing a bit faster and he's been having some trouble breathing if he lies on his right side for too long.  

It turns out that Connor has about a 50 degree curve now, which is around ten degrees more than 2012.  However, the doctor still wants to hold out and delay his surgery until we're close as possible to ten years old, which is kind of the magic number as far as spinal fusions go.  So we have a shiny new referral to pulmonary to monitor Connor's lung function and make sure we're still safe to wait.

One of the major reasons we'll be waiting is because there's a much more urgent issue; one that I was pretty much completely blindsided by as it wasn't even on my radar.  It turns out that Connor's right femur is juuuuuuust about to pop out of the socket.  This is a pretty common problem with kids who don't walk at all and who have unusual muscle tone.  If he doesn't have surgery within the next month, it's likely that in addition to hip displacement he will begin experiencing hip dislocation issues, which can be enormously painful and do a lot of permanent damage.  His left femur isn't quite as urgent, but it's on its way out as well.

I swear, it's always something with this kid.  He doesn't do anything by halves.

So on May 20th, Connor is now scheduled for a bilateral varus derotational osteotomy with pelvic osteotomy, and probably an adductor lengthening as well.  Basically the surgeon will be taking my kid's thigh bones and hips apart, realigning all the pieces appropriately, and then bolting the whole mess back together with what looks like pieces of the Erector Set I played with as a kid.  Connor will spend the first week or so in the hospital, four-six weeks in a body brace, and will probably have a 3-6 month total recovery.  He'll be out of school for the rest of the year.

This will be the first major surgery Connor has had since he was about three weeks old, and it's by far the most complicated.  Jeremy will be able to be here for the first two or three weeks, but then he'll have to go back to his clinicals and the little guy will still be in his brace and almost entirely home-bound for another 1-4 weeks.  I'm still wrapping my head around how the heck I'm going to work this logistically; Connor will need around-the-clock care and frequent repositioning, and Eden will still need to do things like eat and occasionally leave the house.  I always like a good challenge, but this is kind of ridiculous.   

I also feel incredibly guilty because we're going to be putting Connor through some major trauma.  It's just not possible for us to explain to the little guy what this surgery is going to be like in a way that he's going to understand.  It will be terrifying and extremely painful, and he'll probably be set back a lot in his functional skills, and I really wish we didn't have to do it.  But the alternative is worse and the need is urgent, so we'll do what we have to do even if it's really really tough on all parties involved.  

So it's likely to be fairly crazy around here in the next few months, as we prepare for surgery and then begin Connor's long recovery.  It's not the news I hoped we'd get, but I'm so, so glad we kept the ortho appointment and found out he needed this done.  If we'd rescheduled, he might have already experienced a dislocation and we would have ended up with emergency surgery instead, which is never something we'd like to do.  I'd much rather have a plan in place and hopefully already have supports lined up for his post-surgery days.

I'll make my plans and figure out how the heck I'm going to juggle everything.  In the meantime, I'll be babying Connor's hip to make sure it doesn't pop out of the socket before the surgery, which totally sounds like something that would happen.  We do tend to do things in The Most Dramatic Fashion Ever around here, so I don't want to push my luck.  

So yeah, not the best of weeks.  I'm feeling pretty overwhelmed at the moment, and I'm kind of floundering around as I try to wrap my brain around everything that needs to get done.  I really hope this whole thing goes as smooth as it possibly could under the circumstances.  The little guy is such a fighter, and hopefully he'll bounce back quickly and be much more comfortable after he's fully recovered.

It'll be tough, but we'll make it!

~Jess

In Which We Will Do All The Driving

Tomorrow will be The Day Of The Medical Clinic Tours for me and the little guy, so I'm going to keep this short.  We need to leave here by 5:45 am to be able to make it through rush-hour traffic Connor's neurology appointment in Seattle.  Once it's over, we'll be headed to the pharmacy at the hospital on post, as one of Connor's new medications can only be picked up there if I don't want to have to pay for any more of it out of pocket.

  Then we need to stop by Connor's doctor's office in Puyallup to pick up the paperwork that allows the nurse to administer Connor's new medicine in school.  He needs it four times a day, and I really would rather not have to come in and give it to him every day if I can help it.

Not only is it kind of disruptive for the class, but it's a twenty-five minute commute each way.  So it eats into my important Sitting-Around-By-Myself-Eating-Chocolate time, and obviously we can't have that.  I'll be attending an adoption seminar on Friday, so I've got to cram all this stuff in tomorrow.

So basically it's going to be a whole lot of driving around to various waiting rooms.  Huzzah!

At least today was pretty good for all parties involved.  Connor had his feet measured for new AFOs, and Eden did quite a bit of studying for her classes.  I spent most of the day on the phone coordinating various appointments and running around trying to get the medication issue straightened out.  I can't say that I had a particularly good time doing it, but at least I accomplished some things, which always feels nice.

I'll be glad when things settle back down a bit, though!

~Jess

In Which We Have A Rough Day

We've had a couple of rather eventful days over here, I'm sorry to say.

Sunday night around eleven at night, I was sitting in the living room waiting for Connor's night nurse to arrive when I heard him start throwing up.  I put down my book, walked into his room, turned on the light and my heart sank.  A sizable patch on his sheets was stained pink and bright red.  Even though we'd had a false alarm a few weeks ago, there wasn't any doubt in my mind this time as to what was going on.

Connor was having a gastric bleed.

I got on the phone to make arrangements for Eden, and started packing up the things we'd need at the hospital.  Connor threw up more red-and-pink Pediasure while I was getting him ready to go.  Other than the fact that he was vomiting blood, he actually seemed perfectly fine-- a bit crabby that I was making him get up in the middle of the night, but not in any real pain.  So I drove him to the ER myself.

Because he really seemed like he was okay (and also possibly because of that false alarm earlier in the month) it took the ER about four hours to test the residual I brought with me and that was pulled in the hospital for blood.  Both tests came up positive.  At that point they inserted an IV-- which thrilled the kiddo, let me tell you-- drew levels, and gave Connor's GI doctor a call to figure out what he wanted to do.  Connor spent the time flirting with the nurses, complaining to me that he wanted to go home and patting his new gigantic teddy bear one of the techs brought him.  I spent the time watching back-to-back episodes of Sungkyunkwan Scandal and drinking massive amounts of coffee.  Thank goodness for wifi and caffeine.  

The little guy's blood levels came back without any troubles and he wasn't anemic, so that was a very good thing.  The GI doctor prescribed two new medications for Connor to help his stomach heal, and they sent us home around six-thirty in the morning.

It wasn't until much later in the day that I realized the emergency room doctor hadn't said anything about the fact that Connor was on aspirin.  The little guy takes it for stroke prevention, and he's been on it since he was six weeks old.  Long-term aspirin use is pretty notorious for potentially causing gastric hemorrhaging.  I was pretty surprised they didn't at least stop it while he was actively bleeding, so I called up the GI triage and asked them about it.  I got a call from the doctor this afternoon and we're stopping the aspirin until at least next week.  Hopefully that will give Connor a chance to heal while we figure out our next move.

So that was not a particularly fun couple of days.  I finally stopped pulling bright red residual out of Connor late Monday afternoon, and by the next morning it looked pretty dang close to the first time I'd taken him in.  By this evening I couldn't see any evidence of bleeding anymore, so that's a very good thing.  I'm glad it wasn't a serious bleed, and I'm hoping that he'll be more comfortable now that he's getting some treatment for it-- I can't imagine his poor little stomach has felt particularly wonderful lately.  

But I would really like to never, ever do that again.  As a mom of a medically fragile kid, my sense of what situations justify a freak-out on my part is waaaaay off.  Over the course of the past few years, I have performed mouth-to-mouth on the side of the highway, reinserted a g-tube on the changing table in a mall bathroom, and called 911 on multiple occasions without skipping a beat.  I have now discovered that watching my child vomit blood is well over that line, and I would never, ever like to see it again.

Whee.

~Jess

In Which We Don't Have A Particularly Fun Time

So Thursday Connor had a couple of seizures, threw up something that looked nothing like Pediasure and I pulled about 65 ml of what bore a strong resemblance to dark chocolate mixed with coffee grounds out of his g-tube.  This, for those of you who are not medically inclined, was an indication that the little guy might have had a major gastric bleed, which falls in the category of Things You Never Want To Have Happen To Your Kid Ever.  My threshold for panic over possible emergencies is pretty ridiculously high at this point, but I have to admit that after I saw the contents of the syringe I came the closest to freaking out that I have in a long, long time.

So after a phone call to the doctor's office, where the triage nurse told me that we needed to be at the hospital now, I packed up Connor, made arrangements for Eden to stay with my parents, and headed down to the emergency room.  The receptionist at the check-in and the nurse who did Connor's vitals both recognized us, because my child is a frequent flier down there.  While it gets us really good service, this is not the kind of thing I'm particularly thrilled to be able to say.

Anyway, the emergency room was apparently the cool place to hang out on a Thursday evening, because there were probably over 100 people in the waiting room.  The hospital was so crowded that they were turning away all ambulances that didn't have someone with an airway issue or who was actively coding inside.  Since the little guy, though lethargic and crabby, didn't seem to be dying at that particular moment, we settled down for what was probably going to be a long wait.

Connor doesn't like waiting.  Also he has an impeccable sense of dramatic timing.

So about fifteen minutes after his vital signs were taken, the little guy had a seizure.  I pulled him out of his chair, turned him sideways on my lap, and flagged down a passing nurse for what I thought was going to be helping me time.  She took one look at my kid, who was at that moment turning a particularly lovely shade of blue, told me to follow her and booked it through the doors.

Despite my protests that seizures with cyanosis were fairly commonplace in our house and not why we were here, they kicked some poor guy out of his room into the hallway, slammed clean sheets on the bed and told me to put Connor down.  Of course, his seizure ended just as they got the oxygen ready, and then he took a nice little nap in his new comfy digs.  That's one way to jump the line, I suppose.

So then shortly thereafter we saw the doctor, who tested the residual I'd brought in and discovered that, despite his agreement that it looked exactly like what you would expect with a gastric hemorrhage, it was not in fact blood.  So that was a very, very good thing.  However, Connor proceeded to have two more seizures in the emergency room, so they wouldn't let us go home either.  They gave him a hefty dose of Ativan after the last one, which made for a very sleepy kid.

I pointed out that Connor's seizure threshold lowered any time he got sick at all and it probably just meant he was coming down with something, that we wouldn't have brought him in for seizures and the reason we'd brought him in was resolved, and that any additional time we spent in the hospital meant adding to the risk of the little guy picking up some other nasty bug, but the doctor still decided he wanted us in overnight for observation and that the best thing would be for us to transfer up to Children's in Seattle.  I can understand his viewpoint, though I wasn't really excited about the decision.  Better safe than sorry, I suppose.  So off we went.

The ride there was probably the most dangerous part of the evening.  The roads were covered in ice and it was actively snowing along the first nine miles or so of the trip, and since Jer's gone I had to drive the wheelchair van up instead of riding in the ambulance with Connor like I usually do.  Wheelchair vans are not exactly built to drive well on icy roads, and I had a few harrowing moments where I could feel the back end start to fishtail despite traffic driving at about fifteen miles an hour.  Thankfully the weather cleared up a few miles north and it was smooth sailing after that, but I passed enough wrecks in the first part of the drive to make me very glad the roads would probably be clear by the time we came home.

So after I met the ambulance at Children's and Connor was checked in to the emergency department there, I repeated my reasoning for why we didn't need to be there to their attending physician. Thankfully I was able to convince her with the same arguments, and after a few hours, various clear diagnostic test results and a loading dose of Keppra to keep Connor from having more seizures while he worked through whatever bug he was likely coming down with, we were allowed to go home.  We finally got back at around 5:30 in the morning.

Connor spent the next few days getting over what was probably a fairly mild GI bug, and is now back to school and his usual business of being a super laid-back, happy little guy.  I'm finally caught up on sleep, and have also gotten back into my usual routine.  So all's well that ends well.

I'm hoping that's the last bit of excitement we'll have around here for a while!

~Jess

In Which We Have A Rather Crazy Week

Well this has been a rather eventful week.

Here's a quick rundown of what's happened so far.  Friday we went to a play.  Saturday we saw a ballet.  Sunday was Easter.  Monday was Connor's seventh birthday, and we took a trip to the zoo.  Tuesday Connor got double pinkeye and then had a 45 minute long seizure and we ended up in the emergency room.  Wednesday morning we had Ellen's physical therapy evaluation and then were off to the doctor, where we discovered one of Connor's ears was completely blocked with earwax and that he had the beginnings of aspiration pneumonia.  And today I woke up sick.  So Connor and I are currently miserably sharing couch space while Ellen, who is perfectly fine, plays on the iPad.  Yes, she's home right now.  Did I mention that it's spring break?

So yeah.  We've been a bit busy.

My strategy going into spring break was Keep The Children Occupied So They Won't Have Time To Freak Out About There Not Being School.  Both my kids are just slightly routine oriented.  But frankly I think we've gone overboard; I'd rather things slow down a bit now.  Like that nine hours in the ER thing?  We totally could have skipped that. 

However, we have seen some really good things come out of this week too.  We got to see how Ellen would respond to her first Connor-related emergency; though she was concerned about Connor she remained calm and did beautifully. 

Then there was the wonderful woman at the play we saw Friday night who, when she saw that Ellen was completely overwhelmed from the volume of the actors (we were sitting practically on the stage as that's where the wheelchair seating is and Jer wasn't able to be there due to school so we couldn't split forces), offered to sit in the back with my daughter so she could enjoy the play like everyone else.  And when the EMTs were here one of our neighbors I hadn't met yet walked into the house-- turns out he's a doctor at the ER we were about to visit.  So he called ahead for us, stopped by the hospital later, and visited our home the next day to check up on Connor. 

I am forever thankful for the wonderful people out there who get our family-- who instinctively understand how to interact with my children, me and Jer and offer help, encouragement and compassion without making them or me feel patronized or set apart.  And I must admit that there are times I take those things for granted-- we have so many places in our little town that we can go where the kids are accepted without so much as a blink. 

I won't deny that it's been a rough week.  But I'm glad that it reminded me just what a wonderful community we're able to live in here.  Sometimes I forget just how fortunate we really are, that I am able to take small kindnesses for granted now and it takes extraordinary circumstances for me to realize just how amazing people can be.

~Jess

In Which We're Headed To The Hospital

Connor had six seizures today, and enough is enough.  The neurologist would like Connor to have another EEG before he figures out which medication he'd like to change (or add), so we're going in for one tomorrow morning.  It's going to make for a pretty early morning, and it will be the first time since we arrived home that I haven't seen Ellen off to school.  I'm really wishing that Connor's seizures had waited a few more weeks before blowing up so we could have had more time to settle in.  Or even better-- a few more years.  Or never.

But it wasn't too be, so we'll figure things out.  Keep your fingers crossed that they'll capture an event during this EEG, or the next step is a 22 hour overnight study.  I'm so not ready to be away from my girl overnight yet, and I'm pretty sure she's not ready for that either.  But we'll do what we need to do if it comes to that.

Wish us luck tomorrow!

~Jess

In Which Connor Meets More Firefighters And Takes An Ambulance Ride

Short blog tonight-- I'm exhausted.  Instead of giving my speech last night, I was in the local emergency room until the wee hours of the morning.  That afternoon as I was literally walking out the door, Connor's respite care nurse called me back because Connor was having a seizure. 

And he continued having a seizure for the next forty-five minutes.

Thankfully he kept breathing through the whole thing or I'd probably be writing a very different blog post.  I gave him the Diastat at five minutes in, and at around fifteen minutes in the EMTs gave him a dose of Valium.  Neither stopped the seizure.  It finally stopped on its own well after we got to the hospital. 

It was one of the violent jerking variety, and I'm pretty sure he was aware during the whole thing.  I think it scared him rather badly, which is completely understandable-- it had the same effect on me.  The doctors suspect it might have happened because of the reduction in seizure medication a week ago.  They went ahead and raised the dosage of one of his other seizure drugs to try and curb the problem. 

Amazingly, five minutes after the seizure was over Connor was signing that he didn't want to be there and was ready to go-- the seizure and the massive dose of sedatives he had on board didn't seem to slow him down much.  His left hand was paralyzed for a while, but it slowly started getting some function back.  The doctor was starting to talk about discharging him for the night and letting us go until Monday, when we'd go to Connor's primary care manager, when the little guy threw up a brown, chunky substance that ended up being blood.  Fantastic.

Luckily his complete blood count still looked good so they didn't think he was massively hemorrhaging or anything, and the blood didn't look fresh.  However, it was pretty worrisome to see, though the problem didn't seem to be urgent.  I'm pretty positive that Connor didn't bite the inside of his mouth or his tongue while seizing because we didn't see any blood coming out of his mouth during the seizure, so it's possible that he has some irritated patches in his throat from stomach acid, an ulcer, or even just that his g-tube got yanked on at some point during the transport and caused a bit of a tear his stomach lining.  At any rate, we're checking his stomach contents twice a day to make sure we don't see any more blood, and the little guy will be heading into the doctor's office on Monday to see whether or not Connor needs a scope done to figure out the source of the problem.  Whee.

So that was not, perhaps the best day ever.  We got out of the hospital at Early 'O Clock, and today for the most part we spent a very quiet time at home.  Connor slept for most of it, and he's out for the count now.  Other than the hand issue and the whole internal bleeding thing, he seems to have suffered no ill effects from his prolonged epileptic state, which is a real relief.  It was not, however, an experience I'd care to have again. 

Ever.

~Jess

In Which Connor Goes To The Neurologist

Connor and I drove up to Seattle today for his quarterly neurologist appointment.  It was actually a great appointment, and I don't say that often about neurology appointments.  That's because usually we go up and tell the neurologist that Connor's seizures have been getting worse.

But for the first time in a long, long time, we could give him a good report!

Since we found out that Connor has anhidrosis (a.k.a. he doesn't sweat) and have started taking precautions to make sure that he doesn't overheat, we've seen a dramatic downturn in the number and severity of his seizures.  Now other than periods in which he's sick and running a fever-- in which case we've just learned to expect tons of seizures-- he's averaging one about every three weeks, which is better than we've seen in well over a year!  As a consequence, not only is Connor feeling much better, but he's been communicating much more and regaining skills we haven't seen in a long time. 

Also the progression of the neurological damage Connor's seizures inflict on his body, like the tremors, has slowed way, way down.  Of course the damage already done probably won't reverse, so the clonus and hyperactive reflexes he already has are probably here to stay.  But he's still young and the human brain is remarkably resilient, so if we can keep his seizures down to this sort of manageable level and do our best to keep him from getting sick, there's no telling what kind of strides he could make in the next few years!

After Connor's appointment we headed straight over to the lab, where Connor got his blood drawn to check his medication levels and also to see what the protein and creatinine levels-- indicators of his kidney function-- are looking like.   

Luckily the blood draw didn't take long and was pretty much painless for Connor, since we were lucky enough to come in when Hector The Wonder Phlebotomist was working.  I swear that man is magic-- Connor doesn't even flinch when he puts the needle in, and he gets it right dang near the first time every try.  We should find the creatinine and protein level results out some time in the next couple of weeks; keep your fingers crossed that those levels will have gone down, which would be an indicator that his kidney is doing its job and isn't in trouble.

So after that we walked around the shopping center down the street from the hospital, picked up a reward book at the in-resident toy store, grabbed a bite to eat, stopped in the chocolate shop for some goodies and then headed home. 

We'll see the neurologist again in September, unless we have something important come up before then.  I hope that appointment goes as well as this one did!

~Jess

In Which Connor Has ALL The Germs

Connor's doctor called today with the news that the results of the cultures done at her office on Monday had come in. 

So yeah, he's got strep throat.  But he also has a yeast infection around his g-tube and RSV.  No wonder the kid's been so sick!  He's been fighting three infections all at once. I should have known-- nobody does anything by halves in this household.

So avoid my house like the plague, people. I seemed to have somehow dodged both the strep and RSV bullets, which is nothing short of a miracle considering how contagious that stuff is, but I may just not be showing symptoms of the RSV yet.

Anyway, now I'm putting a topical cream on his g-tube site a couple of times a day and watching the little guy like a hawk to make sure his horrible upper respiratory infection doesn't progress to bronchitis or pneumonia.  RSV is not a particularly fun viral infection for a medically fragile kid to have.  If need be, we'll go back to the hospital.  Again.  I'm just hoping to avoid that since it's probably where he picked up the RSV in the first place.  Hospital waiting rooms are always an infection risk for the little guy.  I kind of want to make him a nice bubble to fit around his wheelchair for when we have to go, but there's this little thing called air circulation that he kind of needs so I don't know how well that would work.

But seriously-- strep throat and a yeast infection and RSV?  What's next, malaria or something?  I swear we haven't been dipping our kid in a vat of germs or anything. 

So yeah.  Right now he's absolutely miserable.  He keeps coughing so hard it's making him throw up, which can't be pleasant with the sore throat.  He once again spent most of the day sleeping, but he kept snoring so loud he woke himself up. 

Poor little guy.  I hope he feels better soon.

~Jess

In Which We Go To The Hospital Again

Well, it was another fun-filled day at the hospital yesterday.  Connor continued to run a fever despite being on heavy-duty antibiotics for three days, so evidently there was something else going on.  I thought that maybe he'd caught a cold on top of the strep, as he started getting pretty congested on Sunday.  I tried taking him off the Tylenol early in the day and his temperature began to rise.  Then he had a couple of quick seizures, so I put him back on the stuff and we were off to the doctor's office again. 

Connor's doctor wanted some more tests run to see what could be going on as the little guy has had a fever off and on since November 22nd or so, but they couldn't do the tests in the office.  So she sent us to the ER yet again-- this time the on-post hospital.  I like to avoid going there unless I absolutely have to because of the long waiting times, and yesterday was no exception.  We waited for about four hours before going back to see a doctor.  Connor snoozed on my chest.

So they did another urinalysis, took a chest x-ray, tested him for mono, checked his temperature, which had come down, and announced that they didn't know what the issue was and we could go home.  We got back to the house around midnight.  Fun times.

I'm still thinking that the back-to-back-to-back fevers were coincidence and that the little guy just has a viral infection on top of the strep.  We'll see what the doctor wants to do today; hopefully his temperature will stay down today and that will be the end of it.  I'm getting kind of tired of the hospital.

Blegh.

~Jess

In Which We Head To The Hospital And Get Some Answers

So today didn't go particularly well.  But at least we have an explanation for what's been going on recently with the little guy!

So I got a call from Connor's school this morning around 10:30 to come and pick him up.  He'd had a couple of seizures and just wasn't recovering very well, so we figured he'd better sleep it off at home.  Shortly after we got back to the house he had two more in rapid succession.  I took his temperature and it read 101.3 degrees. 

The mysterious fever was back.

Four seizures in two hours was not a good sign.  I gave him a dose of Tylenol and then started weighing my options.  After trying and failing to get an immediate appointment with his pediatrician, I left a message on the triage nurse's machine about what was going on and that if I didn't hear back pretty quickly we'd be headed to the ER.  She called me back shortly thereafter and told me to go ahead and take him to the hospital to get him checked out.

So off to the emergency room we went.

Connor had a tiny, five-second or so seizure just as we walked in the door.  Then he fell asleep in my lap in the waiting room.  After we were shown back to our room in the ER, the doc ordered blood work, took a look in Connor's ears and mouth and then took a throat swab.  The verdict came back twenty minutes later.  The little guy had a nasty case of strep throat.

Problem found.

They said his white blood cell count was through the roof, so he'd either had it a while or just had a really nasty case of it.  Of course I felt horribly guilty that I had no idea; I'm sure he hasn't been feeling good for a while, and he might have been spiking fevers all week that I just didn't catch.  Poor little boo-- no wonder he's been clingy in the past few days.

So we stayed in the hospital for a while as they figured out what his treatment plan was going to be.  While we were waiting his Tylenol started to wear off and he had another seizure, so they gave him another dose along with a solid helping of Ativan.  Then they gave him a shot of an drug called Rocephin, which is a seriously heavy-duty antibiotic.  They sent us home with a ten-day prescription for Omnicef, which is another antibiotic.  Hopefully those two drugs will do the trick.

So while I wasn't excited about spending the whole day in the hospital and I'm sorry that Connor is sick, I am glad that the doctors found a simple problem that was easily fixable.  That doesn't happen very often in our household; usually we're the Medical Mystery Clan around here.  Of course, I did spend the rest of the day completely paranoid about how my throat was feeling because strep is one of those lovely contagious sort of bugs, but that's okay.  At least if I do end up with strep, we'll know what it is right away and won't end up waiting a week or two before figuring it out.

After we were discharged and came home little guy pretty much conked out.  I hope all the sleep is healing for him and he's feeling better soon!

~Jess

In Which We Visit The Hospital Again

Guess where we spent the day?

Yep-- it was back to the hospital for us.  Connor started seizing at a little after nine in the morning, and over the course of the day he had eight seizures while on Ativan.  So after seizure number five I took him back to the emergency room.  I wasn't really comfortable with the whole one-seizure-an-hour thing. 

So we spent most of the day there while Connor's neurologist figured out a game plan for us.  Connor is starting on a new medication called Zonegran, and he's coming completely off his valproic acid.  We'll see what these changes do for him over the next few days. 

And that's about all the energy I have for blogging.  But we're home now, so that's good!  I'd like to stay there for a while.  Please.

~Jess

In Which Connor Has A Gajabillion More Seizures

So we didn't go to the dentist's office today.  Instead we rescheduled and stayed home, because Connor had six seizures and I didn't think getting on the highway with him would be a good idea.

This is seriously not a good trend.

So depending on how tomorrow starts out we may or may not end up back in the hospital, which no doubt will be Fun Times.  Connor is having these while on his Ativan, which is even better.  He spent most of the day drifting in and out of sleep.  For some reason he always seems to pull this sort of thing going into the weekend, when all of his doctors are gone.  Also we have company coming from Texas.  And I have a bout on Saturday. 

My child has an impeccable sense of dramatic timing.

It's getting to the point where I need a seizure meter up on top of the blog so I can just tick off the number he had each day.  I'm afraid that he is definitely heading in the wrong direction.  If we do end up back in the hospital we'll almost certainly be going up to Children's, and I'm hoping we might get the chance to see the epileptologist again.  Otherwise we'll just have to see how things go.

Not a good day.

~Jess

In Which Connor Watches Entirely Too Much Hospital Television

Well guess where I spent a good portion of my day?

I'll give you a hint: they had cable television and ice chips.

Yes, I spent a glorious eight or so hours in the emergency room with Connor today, watching some show called The Mysteries of Alfred Hedgehog and wishing I was pretty much anywhere else.  The little guy had his first seizure at six in the morning, and proceeded to have one pretty much every hour on the hour until around 9:00am, which is when I used our diastat.  He actually had his fourth seizure while I was on the phone with the nurse from neurology, which was fun.

Our instructions from the neurologist as far as the seizures were initially pretty much the same-- wait it out and get his levels checked on Monday.  However the nurse was pretty concerned about the choking incident after the seizure in the van Connor had yesterday, and she asked us to go in to our pediatrician's today and get him checked out for aspiration pneumonia, just in case.  The neurologist was wondering if the sudden upturn in seizures might partly be because he was getting sick. 

So I called the pediatrician's office and they were completely unable to fit him in today, and told me to take him to-- you guessed it-- the emergency room.  We got there about 9:30 and were promptly shown back to a room.  There's one advantage to having a kid with Connor's kind of complex medical history; we don't do a whole lot of waiting and we completely bypass the screening process and the triage nurse.  Also we get a private room.  With cable television.

I got Connor settled in, turned on the TV for him (which delighted him to no end as he knows that hospital stays are the only time he's allowed to watch as much television as his little heart desires) and started the fun process of filling the doctor in on Connor's latest escapades.  About that time our neurologist called back again, and asked us to get a chest x-ray done and also a set of blood levels today rather than waiting.  So the ER doc put the orders in and less than five minutes later the tech came to whisk us back to the x-ray room.

Did I mention that I really like private hospitals?

Anyway, so Connor got his first set of x-rays done, and we were positioning him for his second when he started having his fifth seizure of the day.  This is the second time Connor has had a seizure in the middle of an x-ray session, and even though this was a different hospital we managed to once again freak the tech out pretty badly, though to his credit he handled it much better than the last tech Connor pulled this on.  I don't think they have that sort of thing happen very often.  Connor seems to be kind of rough on techs.

So we were there for a few more hours while they waited for his blood test results to come back.  His lamictal results won't be in until Monday, but the valproic acid and the pancreatic and liver enzymes all came back within normal limits and there was no evidence (thank goodness) of aspiration pneumonia.  The little guy's neurologist decided that since the valproic acid didn't seem to be helping, Connor should start working down off of it.  So he dropped the little guy's dose down from 5ml to 2ml and upped his keppra dose from 6ml to 8ml.  We're going to try and keep his seizures under control with ativan until the med change is complete. 

So we were discharged around 1:30 or so in the afternoon and made it as far as the first set of double doors when Connor began his sixth seizure of the day.  I promptly turned his chair around and walked back into the waiting room, where we proceeded to completely freak out the waiting patients, get the crash cart called, etc.  Since they hadn't entered our discharge paperwork into the computer yet Connor went straight back into his bed, where the little stinker soon regained consciousness and immediately began demanding that I turn on the television.  The kid knows our hospital stay rules about television and he was bound and determined to squeeze in every second of TV time that he possibly could. 

What could I tell him?  I made the darn rule, after all. 

So after a shot of ativan and another hour and a half or so of watching Alfred the Hedgehog's crazy and rather implausible deducting abilities we tried leaving for a second time and thankfully managed to make it out the door and home.  I stopped at the store first, because after a day like this one I planned on surviving until Jeremy got home and then locking myself in the bathroom for a couple of hours to spend some quality time lounging in a scented tub with a book and a very large piece of chocolate sour cream cake, and my home was sadly lacking in both bath salts and chocolate sour cream cake, which had to be remedied immediately.  Oh, and also we needed diapers, which was my excuse to buy everything else early and get an early start on the cake before Jer got home. 

Connor better have a better time tomorrow, because I don't think my waistline can take too many more days like today.

So we have instructions to bring him back in if the ativan isn't keeping the seizures under control: a scenario which is unfortunately not all that unlikely.  We'll be sticking close to home for most of the weekend just in case the medication change doesn't go well, because the last thing we need is for him to have more of these things on the highway. 

So yeah.  Fun times.

~Jess

In Which Connor's Brain Explodifies Again

Well that was not a particularly fun day.

Connor had seven seizures today, and he managed to cover just about all of the ways to get my adrenaline pumping.  He had three at home, two in public, and two on the highway.  The second seizure of the day was particularly nerve-wracking because I didn't realize he was seizing for a little bit since I was merging onto a highway, and then when I glanced back and saw his face turning gray there wasn't anywhere to pull over.  By the time the shoulder reappeared and I was able to pull to a stop, throw open the side door of the van and start pulling him out of his car seat, the seizure was over.  Unfortunately he'd aspirated quite a bit because of his upright position, so then we spent about five minutes on the floor of the van while he coughed and gasped and threw up his breakfast. 

Okay, never mind.  Make that eight seizures today.  He had another one just as I finished up that paragraph. 

Anyway, so I called the neurologist at around seizure number five and the message relayed was pretty much what I'd expected; give Connor some lorazepam and go get his levels tested on Monday.  The lorazepam doesn't seem to have done a whole heck of a lot for us, given that we've still seen seizures six, seven and eight today.  We haven't used the Diastat today because (except for the especially mom-panic inducing seizure in the car) all of his seizures have thankfully been pretty short.  I'm really hoping he's at least done for the night.

Oh, yeah.  And we had x-rays too of course, which we won't find out the results for until Monday, and not Thursday as I mistakenly told you yesterday.  Thursday is Connor's dental appointment.  Monday is Connor's orthopedic surgeon appointment, and also my birthday.  Maybe I'll wear a party hat to the hospital in honor of the occasion.

So now I am completely exhausted: too many adrenaline bursts in one day!  And if I feel like that, goodness knows what Connor feels like.  Hopefully tomorrow will be better and we won't end up having to take him in.  While the emergency room does have free cable television and all the ice chips I can eat, I think I'd really prefer to stay home.

Bleah.  No more seizures, kid!

~Jess

In Which Connor Is Suddenly Fine

So I didn't end up needing that overnight bag after all!

Yes, my child took the "miraculous recovery" route; he slept an unbelievable seventeen hours straight and then woke up at seven in the morning happy as a clam.  Not only did he not have a single seizure today, but except for a slight difference in muscle tone probably brought on by yesterday's Diastat he was his normal, happy self.  Thanks so much for all your prayers, support and well-wishes. 

I'm so relieved! 

Even so, I'm still I'm wondering what the heck was up with yesterday.  I mean, seriously-- did the kid think we weren't getting enough excitement around the house or what?  Maybe it was the weird sleeping habits he's been keeping recently.  Maybe his brain got bored and decided a game of Neuron Whack-A-Mole was a good idea.  I have no clue what happened, but I"m sure glad that he's feeling much better!

So instead of spending the day at the hospital like I expected to, instead I spent it shopping online for costume parts.  I just discovered that the theme for this year's Steamcon, to be held in October, is "20,000 Leagues Under The Sea."  As you all probably know, I absolutely love Jules Verne and my roller derby name, Gita Kraken, is a nod to his fantastic storytelling.  And did I mention that my number is 20K?  So obviously I must go to this years Steamcon, and I must revel in all my nerdy glory by dressing up in a costume.  Preferably a roller derby steampunk costume, which might just be the coolest idea I have ever had in my entire life provided I can actually figure out a way to pull it off.  This is what happens, people, when I get all worked up about possibly taking Connor into the hospital and then he suddenly recovers.  All of that nervous energy has to go somewhere.

For those of you who have no idea what the heck I'm talking about, here's a quick explanation of steampunk.  And Jules Verne, though I will be very disappointed in you all if you don't already know who Jules Verne is.  Also the kraken.  Basically it's like they designed this entire convention specifically for me.

Anyway, I spent Connor's nap time sketching up wildly impractical costume ideas and trying to figure out how to incorporate functional roller derby gear into them, which was a whole lot of fun.  This would be the first costume I've ever made for one of these things, thereby catapulting me into the official realm of the Really, Extremely Nerdy.  However, I figure I've been dressing up in various types of roller derby costumes for the last nine months or so, so this really isn't a big step for me. 

And of course I will have to make Connor a matching costume.  Because Connor in a little leather aviator hat with goggles would only be just about the cutest thing known to mankind. 

I'm so happy he's okay!

In Which Connor Is Not Doing So Well And I Come To Terms With Some Things

So my posts in the past few weeks may not have been the most interesting things in the universe.  Some of them have probably bordered on boring.  That's because we haven't had a whole lot going on around here.  But you know what?  I kind of like boring.  Especially when the alternative is the kind of day we had today.

The short of it is that Connor had eight seizures, we used pretty much every form of emergency medication available to us at home, and then he spent the rest of the day sedated and sleeping.  He's been asleep now for about nine hours-- since around two in the afternoon.

He's not running a fever.  He doesn't seem to be sick.  He hasn't gained a ton of weight or been under a whole lot of stress.  Yesterday he was fine.  Today he spent in an exhausted, seizure induced half-coma.

So we have absolutely no idea what tomorrow is going to look like.  Either Connor will make a mysterious and miraculous recovery and we'll have no idea what the heck that was all about, or we'll go to the hospital.  It's going to be one of the two, and while I'd really like to think it's going to be the former I get the feeling that I should probably go ahead and pack an overnight bag.

It's been a good run-- we've gone about four months without being admitted, which is a relatively long amount of time for us.  It's pretty frustrating, though, to continually get blindsided by this sort of thing.  I mean, one day the kid is fine, and the next-- BAM!-- he's not.  Sometimes I can almost manage to forget that we have a child who could literally die on us at any moment.  Then we have a day like this and reality comes crashing back in.         

When we first got the news that Connor was going to have some serious medical issues, when I was halfway through my pregnancy, I remember reviewing everything I'd eaten over the past four months.  I'd picked some blackberries on the side of the road one day; had they been covered in pesticide?  Did I not drink enough water?  Did I exercise too much?  I was looking for someone to blame for the fact that I was most likely going to lose my child, and the easiest person to blame was myself.  I absolutely did not cause Connor's disabilities, but it took the results of a genetic test several months after his birth to completely absolve me of the last of that guilt.

I find myself having to be really careful not to do a similar thing with Connor's seizures when they come on so suddenly like this.  Did I leave him in one position too long?  Feed him too quickly?  Logically I know that there's no way I could have caused him to have them, but it's difficult to get rid of that magical thinking because of the other side of the coin: if I caused him to have seizures by leaving him in one position/not paying him enough attention/singing the alphabet song backwards/insert completely ludicrous activity here than I can magically solve the problem simply by doing or not doing whatever one of those things is needed to make the seizures stop.  We all want a magic wand that we can use to fix our children when things like this happen.  I think mine is out of batteries right now; I keep waving it and nothing changes: Cinderella stays a chambermaid, the pumpkin stays a pumpkin.  My son's seizures don't magically disappear, and we're running out of medication options that don't involve dangerous side effects. 

I suppose that's the nature of life.  Life is a heartbreaking, wonderful, sad, terribly beautiful thing, and we don't get to wrap everything up in a nice fairytale happy ending, no matter what the Lifetime Movie channel might tell us.  We don't choose the paths our children walk any more than we choose our own.  No matter how much I'd like it to be true, I can't change the fact that Connor has a difficult and bumpy road to travel.  I can do my best to smooth his way, and make his journey as happy and fulfilling as possible.  But I don't get to control where his journey ends, or how it ends.  That's not my decision to make.  That's a hard truth to come to terms with, but it's an important one.  I can't control how much time I have with him, or for that matter, anyone else, but I can choose how I use that time.  And weighing myself down with guilt instead of focusing on what things I can do for my son is not the way I want to spend it.

So I'll go in to Connor's room tonight, and kiss his small cheek, and stand over his bed for awhile, watching him breathe.  I'll pray that I'll get the chance to stand over his bed many more nights, doing the same thing.  I don't know how much time I have with him, but then I don't know how much time any of us has.  I just know I want to spend every moment I can filling him to the brim with love.  And with every smile, he reminds me why I started this whole crazy journey of parenthood in the first place. 

I love you, little guy.  Every step of the way.

~Jess

In Which Connor Is Still Very Sick But We Manage To Stay Home

Mom, Quit Taking My Picture-- I'm Trying To Watch Swiss Family Robinson

Well, we're not in the hospital, which I'm very thankful for.

Connor had only two seizures today so we got to stay home.  I think it was a combination of his fever remaining at a stable level (it stayed around 101 all day today) and me being super vigilant about giving him Tylenol every four hours around the clock.  I'm really glad that we've been able to keep him here instead of having to take him in, though we won't hesitate to do so if we feel like he's taking a turn for the worse.

Though he still doesn't have a stuffy nose he's developed a nasty sounding throaty cough and he was still throwing up quite a bit.  His lips are pretty chapped, but I had him on a slow feed through his g-tube all day and he kept enough down to keep from being dehydrated.  He spent most of the day on the couch with me, watching Swiss Family Robinson and looking completely miserable.  Even the ostrich race didn't make him smile, and normally he thinks that the ostrich race is hilarious.

I hope he feels better soon.

I'm trying to get to bed early tonight; I'm looking at the third night in a row of getting up every four hours to give him Tylenol and all of the interrupted sleep is really starting to take its toll. 

Looks like we'll probably be up to more of the same tomorrow.

~Jess