Wednesday, May 24, 2017

Post op day 2

Thank you all so much for your prayers and concern!  

The afternoon/evening was better.  OT got her sitting up and she stayed there for 1/2 an hour playing on the keyboard and using play dough.  

 
Both of her IVs blew at the same time, but they were able to get another in with ultrasound.  Her hemoglobin was a bit better, which made us happy.

She was quite feisty all evening and her number one complaint of all is the STICKER for the c02 monitor they have on her (an alternative to constant blood gases, which I explained to her multiple times).  I told her of all the things she had going on, that wasn't a big deal!  The nurses and staff quite enjoy her. :). 

She slept well on the bipap and her respiratory rate was in the 30s with just a few desats.  This was a huge improvement from the night before.  Things are looking up and will hopefully continue to improve!

Tuesday, May 23, 2017

Post op day 1

We met with the PICU team this morning.  We've been writing this for a while, but there have been lots of doctors and staff in here. Abby's respiratory rate has been very high, so they switched her to bipap with some additional support. 

They are also treating her for sepsis.  At this point, it is in her blood stream and affecting her respiratory system.  They are watching her very closely and she will stay in the PICU for the foreseeable future.  They are also running lots of frequent labs.  We are waiting to meet with the infectious disease team.  Abby is awake, alert, and feisty.  When Matt took a monitor lead sticker off without warning her, she yelled, you took the darn sticker off!!"  So she's sick, but still sassy.  :). 

Our girl could really use your prayers.  I've often said we live "in the woods" and are never really out of it, but this is a scary time.  It is so easy to allow our minds to go to dark places, but we are fighting to stay positive and proactive.  We are thankful for every sassy thing that comes out of Abby's mouth right now!!

Monday, May 22, 2017

Surgery update 8:30

We are with Abby in the PICU.  Everything went smoothly, but they just brought her here for closer monitoring. Dr. Cahill found infenctikn in multiple places, and the right VEPTR was eroded and infected.  Everything on the right side was removed.  The left side was infected, but still in tact.  He decided to try to keep it in, in an effort to support her spine.  It was thoroughly cleaned and may be cleaned several more times before closure.  We will talk to Plastics tomorrow to see how they would like to proceed with that.  We will also be meeting with infectious disease to discuss PICC placement and the possibility of long term IV antibiotics.  As much of a pain as that is, I really think it's necessary.  We need to kill this infection once and for all!

She has been awake and angry, mostly complaining about her 2 IVs.  She can't understand why she needs two! (Usually, she has one and the PICC line, but she doesn't count that!).   She has fallen into a pretty hard sleep now, despite the hustle and bustle of the PICU.

It's been a long day and sleep in the PICU is a joke, so I'm going to try to catch some while Abby is sleeping peacefully (thanks to our good friend Dilaudid). Thank you so much for all of your prayers today.  We feel very blessed to have so many people who care about our family.

Surgery update 5:45

We still have a ways to go.  They have opened up both sides and are washing everything out, but no hardware has been removed yet.  She will go to the PICU instead of back to the ortho floor because it was more involved than they thought, but we don't have details on that.

Surgery update 3:45

Abby just went back for surgery. She did really well going to sleep and was very calm.  The surgery should be about 3 hours.  There are a lot of unknowns, but this infection has got to go.  That's the #1 concern.

The Plan

I spoke to the plastic surgeon this morning.   He spoke to Our orthopedic surgeon (who is already in surgery) and the plan is to remove all of the hardware, leave the wound open, attach a wound vac, and close later this week on Wednesday or Thursday.  They are concerned about her high white count and think the only thing that will get rid of this is to take out all of the hardware. :(. We will deal with the kyphosis later, but this is what needs to be done right now.

Ortho has 5 cases today, so Abby will probably be last since she is an add-on.  One of the wonderful NPs came in to see us and cried when she heard the plan because she knows what a hard year this has been.  All this pain and suffering, only to have the hardware taken out.  I'm thankful she gets it. (She made me cry, of course!)

Abby has gotten sick 3 times today and is feeling pretty miserable, so she's getting some anti-nausea meds and some pain meds to get her comfortable and hopefully make today a little bit better.  




Wednesday, May 10, 2017

Guess what?!?!?!?

 

After nearly 5 long months, Abby got her halo off today!!  We had appointments at CHOP, but we were NOT expecting for it to be removed today.  That was a very exciting surprise!

 She had a Plastics appointment to check the wound first.  It is looking much better and he complimented us on our hard work.  He changed the topical medicine we are using and  said to keep debrieding the wound twice a day.  We have a pretty good routine for that at this point, so it's ok.  We will see him in a month.  

Then we went to Ortho and got X-rays.  After he reviewed the X-rays, he came in and asked Abby if she wanted some good news!!  Eek!  We are THRILLED that her halo days are over!!  While it's a real possibility that she may go back in a halo in the future, it is nice to be done with it at the moment.


Now, Abby is in a hard cervical collar.  Yes, it's still a brace, but she has MUCH more freedom now!!!!  She can take baths, is able to move her head slightly to look around, is finding it easier to walk, as can do her hair, hugs and kisses are much nicer without a bulky halo in the way, and best of all....SHE IS ALLOWED TO RIDE IN THE CAR AGAIN!!!  Being home bound was getting harder and harder and Abby was starting to become resentful that she was missing out on things, so this is probably the best part!  We still need to be careful (as always!) but it will be nice to go places as a family again.

So here's to being halo-free!  Thank you Lord for this unexpected blessing!  We are grateful!!!