Monday, April 24, 2017

Back to CHOP

Abby's incision is getting progressively worse.  We went to Plastics for a follow-up last Wednesday, and he changed some of how we do drsssing changes.  I emailed a picture Saturday night when we felt it was getting worse, and he increased the number of dressing changes each day and how they were done.  I have been SO diligent and careful.  Ridiculously careful!  Wound care is practically a sterile procedure in our house.

Unfortunately, it kept getting worse.  I emailed more pictures tonight and the plastic surgeon wants to see her on Wednesday during clinic.  He is going to change her antibiotic and increase the duration (she was supposed to be done in a week).  

Of course, we will pack.  We always pack when it's something like this.  Ugh.  

Friday, April 14, 2017

The Little Mermaid Recap




 Caleb officially had his school musical acting debut in The Little Mermaid!  He was Grimsby, Prince Eric's servant and confidant.  Caleb opened the show singing, "Fathoms Below" and also sang part of another song later in the show.  He sounded fantastic and looked so confident up there!  We were so proud of him and thrilled that he seems to have found his "thing!"
 







This was taken on the first night when the lights went up at the end of the show and he was able to see Abby.  He wasn't sure if we were going to make it home from the hospital in time, and he was thrilled that we were in the audience!

 



The talented cast of 4th and 5th graders!


Caleb and a princess :)


Caleb and Ariel :)


We are certain that there will be many more musicals in his future, since he's already looking forward to the next one!  I think I'm officially a theater mom!

Thursday, April 13, 2017

Adjusting to Life at Home

We got home last Thursday just 10 minutes before Caleb's show started!  We were all thrilled that we could be there to cheer him on.  He did awesome and I will post pictures soon.  In true fashion, we hit the ground running when we got home and haven't stopped since!


Abby has enjoyed being home and is taking everything in stride as usual.  She's been doing lots of school work during the day to keep her skills up.  Her medicine schedule is finally starting to slow down a little as we are able to wean some of the respiratory meds. For a while there, it was crazy!  My alarms on my phone were going off constantly!  Now, we have it down to 6 a.m., 8 a.m., 12 p.m., 6 p.m., 7:30 p.m., and 12 a.m.  It's not great, but it's better than it was! 


The reality of wearing the halo for 6-8 more weeks has set in with Abs.  She handles it amazingly well, but she does say rather matter of factly that she hates the halo.  I can't say I blame her!


She gets her stitches out next Wednesday and then we will see about when she can go back to school.  She's been managing her pain pretty well during the day, so I'm thinking it should be soon.

Wednesday, April 5, 2017

Post-op day 5

Abby had a good day and is up and moving much more.  We went downstairs to play Doctor for a Day, to meet a therapy dog, and to play bingo!  She won a checkers game in bingo and had some impressive doctoring skills...she even used the Site Scrub to clean the baby's IV for the required 15 seconds! 😂 #medicalkid

 

As always, our nurses here have been great and we have gotten great care.  They did repeat labs a few hours ago and most everything is looking better.  Abby's halo has been adapted and is back on.  Much to my surprise and amazement, she didn't fuss or seem to care at all!  She has been perfectly fine with it on!  

 
Abby is eating better, thanks to the Prednusone munchies, and she has really seemed to enjoy food again!  I'm hoping this is the end of the three week fast!

 

Funny story--I threw my hair in a pony tail this morning (who has time for hair and make up in the hospital?!). Abby pulled me in like she was going to give me a hug and said quite sweetly, "You look just like...a boy!" 🤔. Thanks kid!  😂

I've loved having my parents here to entertain Abby and just be a support.  They're the best!  We are hopeful that we are nearing the end of this hospital stay!!  🤞🏻🙏🏻 

Tuesday, April 4, 2017

Post-op day 4

I'm a little late in posting because we saw lots of doctors today!  She is quite popular!  (Not to mention that she's the star of the 4th floor with all of the nurse's doting on her!) 

Abby was pretty lethargic and pale yesterday, with some continued respiratory issues.  I requested pulmonary come see her, and they got things rolling with neb treatments and steroids. 

Blood work was also drawn. Hemoglobin was 8.0--a little low, but they are just watching it.  
CRP (infection marker) was 3.2, up from 1.1. The infectious disease team doesn't like that the CRP is trending up instead of down.  They will draw more blood in around 48 hours to see if it is down. 

The halo has been professionally cleaned in the same manner as surgical equipment, so it's officially disinfected!  The brace company is now making some adaptations to it, but it may take a few fittings to make it work.  This has never been done before, so it's trial and error.

Her incision has changed since this morning and we are all kind of worrying about it.  It is now very red and angry looking.  Plastics saw it and thought it might be a reaction to a dressing, but nothing that is on her is new to her.  She has used it all before.  They are watching that closely and I'm not going anywhere as long as it looks like that.  I'm pretty done with infections!!

We had a visit from a fellow VEPTR family today, which was so sweet!  They brought Abby some fun bracelets and press-on nails, which Abby thoroughly enjoyed!  My awesome parents came up today to visit and stay in the area.  Abby enjoyed Nina's suitcase of fun and was generally much nicer with her around! 

Monday, April 3, 2017

Post-op day 3

Abby had lots of desats last night, even with oxygen.  I'm going to get to the bottom of it and talk to the nurse practitioners today.  

Her bandage was changed this morning and her back is pretty bruised, but they said it's ok.  She has lots of stitches.  Apparently, the plastics team loves stitches!  (And yes, just about ALL of this was open!) 😳

 

Her pain has been under control with meds and she has been in a pretty good mood.  She worked really hard at PT this morning and did 4 stairs.  Her neck is very weak, so we are concentrating on keeping her head up.  Her PT is pretty creative and fun, which definitely helps!

 It sounds like she will go home with a picc and iv antibiotics, but I haven't heard that from the infectious disease team yet.  I'm waiting to see them.  If that's the case, the case manager will need to get rolling on nursing and equipment.

Her picc dressing was changed last night.  It's supposed to be changed 48 hours after placement, which the nurse didn't know.  She argued that it was a week until she finally called the IV team to ask.  Guess who was right?! (She also argued that it had only been 36 hours....uh, Friday afternoon to Sunday afternoon!). After messing up the dressing 2x, someone from the IV team came in and did it right at 10:30 pm.  🙄. Let's just say it's a good thing that I stay here and keep on top of things!

Matt and Caleb are at home so that Matt can go to work and Caleb can be in school and play rehearsals.  This is the week of his show!!  He is very excited, but hoping we will be home in time for all of us to go together.  Trust me, I am too!

Sunday, April 2, 2017

Post-op day 2

I went to the hotel with Caleb last night for some bonding time and a decent night's sleep. We enjoyed a movie and a game of Battleship.  

Daddy and Abby had a sleepover without a lot of sleep.  Abby got sick in the middle of the night and Matt did laundry until about 3.  Poor guy!  

When we came back this morning, Abby was all smiles!  She has been in a good mood this morning and worked hard with PT.  It definitely helped that our favorite CHOP PT Jo was here to play!!  She's the best!  Abby walked to the playroom and did some stepping up, sit-to-stands, and squats.  She is so tough! 

Matt and Caleb just left, and now we are waiting for lunch after getting a bath.  Her hair is looking cleaner with every wash!!  :)