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 Connor Is Stuck On Tape

Today was a busy day of running errands and phone calls, but I still got the chance to enjoy the return of the warm weather by pulling out the roller skates and going for a long trail skate.  I discovered that closing up my pads in a closed gym bag for the entire winter was probably not the best of ideas; I'm glad no one was trying to draft off of me on the trail because they probably would have passed out due to the smell.  It was, um, impressive.  Derby pads do not smell wonderful under the best of circumstances, and three months of zero air circulation does not improve matters.  Trust me on this one.

I still enjoyed myself, though.  It felt pretty good to be back on skates!

Anyway, the kids both had a good day.  The physical therapist kinesio-taped Connor on Wednesday to try and help him sit up a bit straighter, which would help with his scoliosis.  He doesn't mind the tape at all-- actually he kind of seems to like it.  It really seems to be working; his posture was much better today and he spent less time slumping over even when he was tired.  I'm hoping that a combination of the tape and continued use of the adaptive vehicle (which he can only activate when he is sitting up straight) will help slow down the progression of his curve a bit and also help him be a tad more balanced.  We'll just have to see how the next few weeks go!

Eden had swimming today after school. Once she was home we ate dinner and then after Connor went to bed she and I sat next to one another on the couch and read for a while with our mugs of mint hot chocolate.  So while it was a very busy day, it had a lovely ending.  Mint hot chocolate, books and snuggling with my girl?  Can't get much better than that!

~Jess

In Which I Watch A Bookworm Blossom

When Connor's nurse woke him up this morning for school, he started crying, signed "no, tired" and promptly went back to sleep.  This was not a wonderful start to the day.  I told her to let him doze and then woke him up myself about twenty minutes later.  He made a really sad face when I told him it was time to get up, so I brought him into the living room and snuggled with him until he absolutely had to get ready for school.  After that he was okay-- apparently morning snuggles solve many, many problems.

He ended up having a good day at school, and then he had an absolutely fantastic physical therapy session.  He's really getting the hang of the adaptive vehicle he's been driving around, and it was pretty cool to see him starting to figure out how to stop it at just the right place so that he could see what was going on.  He was really interested in the other kids' therapy sessions, and just wanted to stop the car and watch to see what they were doing.  It was cute.  

Eden had a good day as well; she came home in a really great mood after finishing all her homework at the after-school tutoring assistance program she goes to every Wednesday and finding out that she was the only student who had perfect attendance there.  She came right over and gave me a big hug where I was on the couch, and then plopped down beside me to do her reading for the day.  We read out loud together every day; she used to read out loud to me for twenty minutes, but we now each read a chapter, which can take considerably more time.  She just finished Charlie and the Chocolate Factory, and enjoyed it so much that we've started a second book by Roald Dahl: The BFG.  This happens to be one of my favorite children's books of all time, as it is so deliciously dark.  Eden and I are both enjoying it immensely.

She's also picking up books and looking through them on her own now; especially the many adoption-related biographies I have on the shelves.  Currently she's leafing through Cindy Champnella's The Waiting Child, and while I'm not sure how much of it she's actually taking in, she's spent quite a bit of time on it.  

When she first came home she didn't really care for books at all (in Thai or English) because she said the subject matter was boring.  Apparently the books that were available to her in Thailand were not very inspiring-- other than the Harry Potter series, which she read in its entirety.  Charlie and the Chocolate Factory was the first book we've read together where she was disappointed that the chapter was over and really wanted to know what happened next.  I can't tell you how amazing it is for me to watch her begin to fall in love with books.

Good thing I have about 1300 in the house.  I don't think she's going to run out of reading material any time soon.

Of course, it probably helps that we have no television reception and her Internet use is limited to two hours on weekdays and three on weekends-- provided she has her homework, chores, and of course her reading with me done.  Boredom is a good motivator for reading.  Still, I'm thrilled to see her starting to open that door; there are so many wonderful books out there I can't wait to share with her!

~Jess

In Which We Suffer From Various Ailments

I'm afraid Connor might be getting sick again; apparently he threw up at school and then kept falling asleep, and he spent most of Eden's swimming practice snuggling on me and dozing.  He actually asked to go to bed early tonight, which is extremely unusual for him, and when I ran through the usual routine of "Yes/No Twenty Questions," as we term it around here, he was able to tell me that he wasn't sleepy, but that his stomach didn't feel good.  He was out less than five minutes after I put him down.

So hopefully he's not picking up a tummy bug or something.  We'll see how he feels in the morning after a good rest.  He's been sick more than enough this winter already, thank you very much.

Eden woke up with a sore foot; she managed to accidentally launch herself backwards off the couch yesterday, did a reverse somersault and landed with her foot on the slate coffee table.  She started laughing so hard I thought she was crying and rushed over to make sure she was okay.  Whoops.  Luckily her foot wasn't really swollen at all and she could walk on it and move it without too much difficulty, so I told her that if it became a real issue at school she should go to the nurse and they'd give me a call.  Apparently by the end of the day it was feeling much better though, so I didn't hear from her.  I'm glad she was alright, and also that she didn't land on her head!  I think that may be the end of the lying-backwards-across-the-couch for a while.

~Jess

In Which It's Back To Business As Usual

The kids are back in school!  Hooray!

I took a nap, a long, leisurely shower (definitely something I didn't get the chance to indulge in over the past week) and then went out to lunch with my mom at the little cafe inside our local nursery, which is always a dangerous sort of outing.  My mom is a Gardening Enabler, and whenever we go to the nursery together we feed off of each other and always end up taking home rather more than we set out to find.  I got a few starts to replenish the annuals in my herb garden, which I actually needed, and picked up a couple of flowers as well for some of the pots I have on the porch, which I didn't need at all.  It was a lovely lunch.

The kids were both absolutely thrilled to be back to school, though I believe both of them were pretty tired by the end of the day.  It's tough getting back into regular routines after a week of sleeping in!  Hopefully they'll get settled pretty quickly; we've got a very busy couple of months coming up, so it will be good to have them fully acclimated back into their routines before all the craziness starts.

All in all it was a pretty quiet day!

~Jess