Sunday, June 8, 2014

BIG Medical Update Because I'm Big Time Behind...

I never want blogging to become a chore.  When I don't have time or don't feel like writing, I don't.  That's why I'm not a money-making blogger; I can't commit to blogging that much.  I like to write and it's therapeutic for me, but it is also put to the side when other things take precedence.

That being said, I've been short on time the last few weeks during our travels to and from Philadelphia and I have lots of medical stuff to share!

*  Abby had a dynamic MRI done on May 29th.  Our concern wasn't the MRI itself, but the intubation that needed to happen.  She was successfully intubated on the first try in just 15 minutes!!  We had anesthesiologists from the "Difficult Airway Team" (that in itself makes me happy!!) who were excellent.  They took detailed notes of what they did and what they saw the whole way down, and I couldn't have been more pleased.  Abby came out of anesthesia just fine too.  Once she woke up, she was in a great mood.  It's different than your typical post-anesthesia wake up when nothing hurts!  She didn't love the mask while she was being put under, but it helped that I was there to sing to her.  I think there's something to be said for the last face you see being your mom's.

Hopefully the face she saw wasn't like this scary one!  :)

The magic tutu stayed on until she fell asleep, no questions asked.  She's quite partial to the Elsa tutu!

Waking up and watching cartoons

*  The MRI gave the doctors some good information about her ribs and showed that her spinal cord is normal.  This is something they need to check out before they go operating on all of that stuff! We did find out that some of her vertebrae are fused and missing discs.  I don't think that means anything for the surgery...probably  just that she will have back trouble.  I figured as much!

*  During that same CHOP visit, we met with the general surgeon who will be involved with the surgery.  His job is basically to do the incisions and sew her back up.  He was intrigued by her rib gaps and had never seen anything like that before.  (Dr. C has operated on CCMS kids, but none since being at CHOP!  Apparently, CCMS is the only syndrome that causes ribs to be in pieces like that.  So special...) He said her surgery would surely be "exciting," which is not quite what I was going for...it is what it is!  She will have large C and J-shaped incisions from the shoulder blade to down below the ribs on both sides.  Then she will have an incision down most of her spine.  She may have some incisions at her pelvis if it is determined that they can't attach them anywhere else because her ribs aren't strong enough.  They probably won't know that until they go in.
This is a good look at the scars, except that Abby's will be on both sides.

This is what the VEPTR looks like from an xray.  Abby's will be on both sides like this one.

*  We met with our ENT at Hopkins, who scoped Abby to take a look at her tonsils and adenoids.  That was fairly traumatic for the poor girl, but it needed to be done.  Her tonsils look fine and she doesn't have any adenoids--that solves that problem!  I asked if that was an issue and he said that's just one less thing for him to take out.  Sounds good to me!

*  This past Thursday, we left at 4:30 a.m. for Philadelphia again to meet with the pulmonologist...if I'd known it would be a two hour wait before we actually saw the doctor, I would have left later!!

  She had another pulmonary functioning test that showed her lung functioning to be a little better--50%.  He thinks that's pretty accurate and didn't have much to say other than that.  A lot of the questions about surgery we had for him couldn't be answered because it all depends on her how long she is intubated, whether she will need a ventilator, if she'll need CPAP post-operatively, if she'll need a chest tube, etc.  We will just have to wait and see how she does.  I'm praying that she will get her tube out in the OR and won't need any of that stuff!!

*  We got into the Ronald McDonald House this time, which was great.  After Abby's pulmonology appointment, we were able to go back to RMH and play all afternoon.  It was a beautiful day, so we spent a good amount of time at the playground!  A musician came to do a kids' song singalong in the evening, which was adorable.  Abby had a great time with him.  RMH is awesome.  It's so hard keeping Abby happy in a tiny hotel room!






*  We were supposed to meet with the orthopedic on Friday morning, but he had an urgent medical matter of his own to attend to.  It's no one's fault and we weren't angry, but it is unfortunate that we couldn't get our two pages of questions answered!!  The nurse practitioner did her best and promised to get the answers to me soon.  I know they have a detailed plan for surgery, but this type A girl needs to be informed as well.  I can't let them cut open my girl without knowing some information!!

*  A definite praise is that Abby has met her goal weight and we can cut back a bit on the calories.  There's not quite as much pressure to make sure she eats, which is good considering that her eating behaviors have been terrible this week!!  Feeding is such a struggle.  I'm looking forward to starting feeding therapy again now that we've met the goal.  I need help!!

*  The one thing we were kind of upset about is that Abby's surgery date got changed to a week later.  It's now August 6th. They've known for 3 weeks and forgot to tell us.  If we'd known then, we wouldn't have made some of the plans we did.  I think that everything has been switched now and it turned out okay, but it's frustrating when you plan your summer around a date and you have a husband who has a really tight schedule!

*  Tomorrow we are meeting with the jaw surgeon at Hopkins to discuss the jaw distraction.  It won't happen before the VEPTR, but we are thinking it may need to be done in the fall after she recovers from the summer's surgery.  We know she has trouble breathing and the jaw is what is causing that.  If bringing it forward and opening it up will help her breathe better, we'll do it.  And buy her Frozen memorabilia to make her smile through the pain.  Poor, sweet girl.  I hate that she has to go through all of this.

I think that's it.  Shew.  That's a lot.  It makes my head hurt just thinking about all of this.  When I write, I sometimes almost forget that this is Abby I'm talking about...not some fictitious kid with whom I'm just a third party.  This is my daughter who is going to have to endure all of this.  God has entrusted us to support her and to make the best decisions we can for her.  At the end of the day, I have to know that we are doing what is best for her. I know the VEPTR is the right choice, but it doesn't make it easy.  I hope one day a healthy, middle-aged mom named Abby will look back on all of this and know that we made the right decision to choose the VEPTR when she was three.


1 comment:

Raelyn said...

Julie....
For some reason, I felt lead by the Lord to share with you this. It was written in my private Word document journal. ;)
Scars are tattoos with better stories. I found this phrase Online. So true, so true, so very true!! You know what? I have never felt ashamed or embarrassed by any of my surgically-created scars. Never. Whether it be the congenital diaphragmatic hernia scar which stretches across my abdomen. I am neither ashamed, nor embarrassed by it!! Or my twain craniosynostosis scars that made me Frankenbaby. I am neither ashamed, nor embarrassed by them, either!! Scars are tattoos with better stories. Mine? They are physical proof of evidence that I am alive!! My surgically-created scars are anything but ugly!! Anything but.
All of Abby's scars? They are beautiful!! Like Abby!! ;)
Hugs and payers!! ;)
Love you later, Raelyn