Another busy week...

So what else is new, being the parent of a very active now 1 year old (OMG - I can't believe he's already one!!!).  I missed last week's post, mostly because without the weekly trips to UNC (YAY!) I forget what day it is.  So, the first few days after surgery we took pretty slowly, and E napped a lot - probably because he was not sleeping solidly at night.  A lot of crying in his sleep, waking and not being able to go back to sleep, and mommy not sleeping much at all. Which is also contributing to my confusion about what day it is.  He's finally starting to settle down again at night, with only an occasional waking or crying out at night enough to wake me up, so I'm starting to feel a little more back to normal.  He's been fine (aside from the sleep thing).  By day two he was back to slamming his cast around for the noise it makes.  By day three he was back to pulling himself to stand and jetting all over the place as fast as he could crawl.  A week after surgery, he actually put enough weight on his foot to transition from one piece of furniture to another, so I honestly think he's going to take his first steps in this cast.
We didn't give him any of his prescription pain meds after the first day.  He didn't seem uncomfortable at all on nothing but generic Tylenol, so we left it at that.  We've made his appointment for the cast and pin removal, and it's a month away.  In the meantime, we're contemplating weaning off the paci.  Pray for us...

Surgery done!

Praise God!  We're done with the worst part (I hope - I know there's always a chance of recurrence).  We got E to the hospital this morning at 630, and we were in a room meeting the nursing staff by 7 am.  The anesthesiologist talked us out of me going back with him - she said that as a mom herself, it was not a good idea to watch your child basically fight off a nap before surgery.  It helped that she whipped out her iPhone (E loves those things - he is constantly trying to get ahold of mom or dad's), loaded a kiddie app (after she wiped it down with antisceptic), and lured him into her arms with the thing.  He didn't so much as look back at us as she carted him off.  He'd started to get fussy, realizing that he'd missed out on breakfast, but that was gone with the bribe.  I'm not sure how I felt about being "replaced" by a smart phone, but he was happy, so whatever.


The resident came to talk to us a little over 45 minutes later.  They were able to do the minimal procedures - pinning the naviculotalar joint without a big incision and the achilles tenotomy without a big incision - followed by casting his foot into a flexed position, which meant we were going to be able to take him home today.  About 15-20 minutes later, they came to get one of us to go to him in recovery.  He took one look at me and burst into tears, although after giving him his pain meds and unplugging him from most of his lines, we decided the constant tears were from hunger.  My hubby went down to the car to get his formula (which we almost didn't bring - the directions only said to bring a sippy cup or bottle), and we eyeballed the amount of water to mix in with the formula, and he did end up drinking most of the 8 ounces, so that helped.

We left the hospital by 10 am, and loaded into the car for the trip home.  He was able to nap some in the car, but I think when he woke up he was sore - throat, foot, still with the teeth, and did I mention yesterday's onset of the first full-fledged case of diaper rash?  It was mostly healed, but still present.  We picked up his prescriptions (oxycontin and colace - totally are not going to hurry on that one with all of the poopy diapers yesterday which contributed to the diaper rash), and we decided he'll get his oxy and tylenol in 2 hour intervals for today, and then we'll start to stretch it some tomorrow if he's doing ok.  The oxy won't last much beyond that, but I don't expect he'll need it all.  He was already doing much better by bedtime - playing some on the floor and putting himself to sleep for bed.

So now I'm relaxing on the couch watching hockey (GO PENS!) and the baby asleep on the video monitor.  Hubby picked up Thai take out as a treat for us, and we're each enjoying a glass of wine.  For as scary as this morning started out, it's ending up on a pretty good note.  Well, the Flyers are currently winning, but there's still time for them to turn that around.  G'night!

Surgery Tomorrow...

It happened rather quickly at yesterday's appointment - the fluoroscope looked good, so Dr. Henderson decided for us to move forward to surgery....on Thursday.  Less than 48 hours of turnaround.  It might be some sort of record (probably not), and it feels so quick, but I'm guessing that's just less time for me to develop a stomach ulcer worrying about general anesthesia.  He's a healthy baby, so the risks are low.  But the risks are there, and I'll be frank here, it scares the daylights out of me.  Never have I prayed over my little boy more constantly than I have these last 2 days.  I'm comforted by the prayers I know are going out for him from all of our friends and family, and the fact that I know he's in God's hands.

He's been out of his cast now since about 8:15 yesterday morning, and it's been a little funny to watch him try to figure out what to do with his leg.  He figured out the bending the knee pretty quickly, and almost as quickly, he discovered that banging that foot against hard things A) doesn't make the cool sound anymore and B) doesn't feel very good.  His skin still doesn't look great, but after the bath last night (that he was initially rather vocally opposed to) and the time  out of the cast, it's better.  They wanted to give his skin time to heal prior to the procedure (that word sounds so much nicer than surgery) tomorrow.  We have to wash his whole body chin to toes in a bottle of antibacterial soap both tonight and tomorrow morning (that should be fun - anyone up for a 6 am bath with a 1 year old?), and of course, nothing to eat after midnight and nothing but clear liquids until 4:30 am.  Nothing at all after that, which should be interesting.  I think we're going through our 12 month growth spurt a week early, because he's eating almost more than I do at each meal.  Then we check in at 6:30, with the procedure (yup.  I like that word better.) at 7:30.  He's the first one on the docket, and Dr. H was optimistic that it could take as little as 20 minutes, although he said it could take as long as 2 hours if they have to be more invasive.  If it's shorter, we go home tomorrow.  If it's longer, we stay in the hospital until Friday.

So, that's it.  We're packed up, as we're staying with a cousin tonight whose house is only 10 minutes from the hospital, which should help tomorrow morning.  Not that I'll sleep much tonight anyway.

Googled Surgery Information Tonight

In the theory that the more information I have, the better off E will be, I googled CVT surgery tonight.  I've put it off, honestly, because it freaks me out.  I'm a physical therapist, but I work with geriatrics - complete opposite end of the spectrum so not much help, aside from the fact that I can "speak the language" of the medical professionals.  I can decipher medical journals, but that isn't always a good thing, which is why I've postponed doing this.  I already know the risks involved in general anesthesia.  I don't need to be told that there's a risk that my son might not wake up.  I have to focus on the positives - if we don't do this now, it will be harder on him later.  If we don't do this at all, he will never walk normally or without pain.  Would he thank us for that?  Probably not.  We aren't doing this for the look of his foot - he is perfect to us.  My feet are bad, and they aren't bad like his, but I have foot pain frequently and I have to wear rigid orthotics in my shoes for any impact sports/activities and soft orthotics for every day wear.

The nice thing about the research on the Reverse Ponseti Technique is that a) it is almost all recent, and b) the outcomes are really good for the babies that have both the tenotomy and the pinning of the naviculotalar joint.  There seems to be some difference in opinion among the authors on whether or not postoperative bracing is needed, although I'm wondering if that is due to whether or not the child has idiopathic CVT (ie - no other major medical diagnoses that could contribute to muscle development) or has CVT accompanied by something else - spina bifida and athrogryposis are two mentioned in conjunction with CVT.  Most of the current research on treating CVT centers around a study published by Dobbs in 2006 - the next most recent research I could find in the Journal of Bone and Joint Surgery was published 20 years earlier!  Kind of makes me happy that it took us so long to get pregnant with E...

By the way, when I tried to get access to that article, the Journal diverted me to a page where you had to log in, etc or pay $30.  At the bottom of the page though, was a section on if you are a patient or researching something for a patient.  If you email the JBJS as a patient, they will apparently email you a copy of the article you're interested in.  Good for them!  I'm sure it's going to be a tough read, even for someone in the medical field, but it somehow makes me feel better to know the play-by-play that will likely be happening.

So, I got a good review of my anatomy, and I'm feeling a bit better about the conversation with the doctor on Tuesday.  Still not feeling good about the anesthesia, but there's not a lot I can do about that.  I trust that God is looking out for my little boy, and it's all in His hands.

ETA - didn't realize I only saved and didn't post this one on Sunday when I wrote it...