Monday, April 21, 2014

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!



Anonymous said...

I don't know you, it's none of my business, but your blog is public, after all--so I'll just say that it's time for your husband to take a leave of absence from his program and be there for his family in this time of extended crisis. And, by the way, you sound like the nicest person in the world.

Jessica McGuffey said...

Jer's active duty military and currently in the Army PA program. So he's not able to take a leave of absence the way he would be able to if he was in a civilian school any more than he would be able to take a leave of absence from a deployment. Trust me: he wishes he was here just as much as I wish he was!

pixiedust said...

Jess, I'm a first time commenter and wanted to wish Connor the best! I was born with spina bifida and had the same thing happen to me back in 1975 as a six year old. Due to an inbalance in muscle strength, my hips were being pulled from their sockets. Like Connor, I had surgery and it was successful...partially. (it failed on my right side). I'm 40-something now and doing well! The surgery was hard, but I am grateful I had it done. I hope for a successful, not so scary, painless experience for your boy! Blessings to you! Shalace

Anonymous said...

I love how you fight for and with (as in beside) this boy! And I do think you can prepare him for this experience by being calm and caring...maybe he can choose some music he finds calming and use that to help him push through (Haydns Water Music comes to mind). I so appreciate your matter of fact answer to the previous commenter- you and Jeremy have to look at the long term needs of your've also proven yourself to be a very capable mom! I think you will all survive another difficult and scary time and hopefully come out changed for the better:) and Eden will get to see the lengths you will both go to in order to nurture and support your children- a positive, methinks! I wish you all the best and am sending all the love and good wishes possible through cyberspace! Finally....I think it's time to update your bio a lite (ok, when things settle down) to reflect the changes in your family! Much love and good thoughts...

TC said...

Jess, hugs to you and yours from yet another stranger.

The one thing I do need to say is that whatever it is that gives you the strength to be able--even if only here on your blog--to look at everything with such positivity is a true blessing. I'm not going to say any of those normally annoying things about how "I could never do what you do," because I'm sure I could and would if I had to. But what I'm pretty sure I couldn't do would be to find the up side to everything. The fact that you can will serve you and likely has served you well.

Anonymous said...

Jes - We met at the Swim Meet with Shadow Seals Last year (my DD is a w/c user as am I). I am sending you virtual chocolate and waves of strength and hugs. You are so organized that if ANYONE can do this, you can. Just take it one day at a time. Say YES to anyone who offers food for your freezer, to take your DD to the library or park or clean the litter box. This surgery is no fun but Connor is a strong kid (look at what he's endured without letting you know) and will come out of this better than ever. Karen

Sarah said...

My grandmother used to say, "This too will pass." Me, I say, "things won't always be this hard." I'm sending you virtual chocolate, love, coffee, wine, sleep, and grace. You've done hard things before, and you are ever seeking the best choices for your loves. You're a wonderful mom.

Herding Grasshoppers said...

Oh wow - what a lot on your plate! Praying for you all through what will be a tough time.

I guess the one good thing about not being able to explain it fully to Connor... he won't have the anxiety leading up to the surgery that so many would do.

Anyway, I know you're (you ALL are) calm and competent and tough and you will make it through. And I bet you have a great network of support. Wish we were closer and could bring you dinner a time or two!

Julie G

Anonymous said...

Same Anonymous as above:
I'll trust you--you know your own life. The military is a foreign planet to me, so I'm unfamiliar with their ways. Maybe you don't realize that even total strangers can't help feeling concern for you!
Best of luck to you and your challenged, challenging, but loving family.

Anonymous said...


[Guess who's back from CT?]

jwg said...

As to preparing Connor-Does the hospital have a Child Life department? They might be be able to do something like make a doll and mini medical tools and try and show him a little about what to expect. Maybe cast the doll.Also, see if you can talk with a pain management specialist ahead of time and explain how he communicates and functions so they are prepared to meet his needs.

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