Made of Gray

Fourth of July

Happy July 4th & Three Weeks Post-op

Raising the Rare ChildHolly D. Gray1 Comment

Today marks three weeks since Caleigh's surgery. We're still steadily hanging out at Boston Children's Hospital. 

Since the fistula ruptured last weekend, Caleigh has increasingly felt better. Her seven day round of Vancomycin and Meropenem were finished on Friday. Luckily, Caleigh's fever hasn't returned meaning the infection is gone. 

Happy July 4th & Three Weeks Post-op via

Caleigh did develop blisters along her incision. The consensus is that her body is rejecting the dissolvable sutures inside. She still has these blisters, but they look less angry and tight as of today. All of the steri-strips have been removed incase she was reacting to the adhesive on those as well. 

The hospital stepped in and ordered Caleigh's own diapers since she is allergic to the brand they carry here. The day she got out of ICU they tracked them down, ordered them and they arrived the next day. This place is truly amazing.  

Each day it seems that we are getting rid of more and more in terms of support. With less scheduled, we can leave the room more often. Earlier this week we requested no nighttime vitals, repositioning, diaper changes, etc. AKA... don't mess with her. Caleigh is sleeping better as a result. 

The fistula finally looked as if it was closed or almost closed up on Thursday. The drainage was minimal and only when she was standing, dancing or exerting her strength in some way. On Friday, they decided to start clamping her g-button for two hours at a time. On Saturday, they closed it for four hours, then eight hours. On Sunday, Caleigh's button was closed the entire twenty four hours. She tolerated every last bit of it. 

Happy July 4th & Three Weeks Post-op via

Today... Monday, we started a Pedialyte drip. First 10ml an hour and now she's up to 20ml an hour. Every four hours they will go up another 10ml until morning rounds where there will be talk of starting feeds or not. This will be slow. Better slow and safe than having a setback at this point. 

Caleigh is ecstatic. We go over each day's plan and the next steps and she smiles and grins. She said it felt good to have pedialyte in her tummy which is a good sign. She also continues to stool regularly. 

We're all getting a little grouchy and anxious of hospital life at this point. The noise is really getting to all of us. The Grays are one tiny family of introverts and this amazing place for children is not conducive to that trait. Alarms, nurses in and out, vitals, rounds and our dear sweet, screaming at the top of their lungs, neighbors (two to be exact) are wearing us down. We basically have a lack of energy to do much more than art projects, listen to music, get dressed up pretty, go for many walks and watch TV. Put that on repeat and you'd be ready to run for the hills too. 

Today we got dressed in our Fourth of July outfits and walked around the almost empty hospital and Caleigh worked on a watercolor flag this morning. We had planned on staking our claim to a great Boston Pops spot and watching the fireworks while we were in town. I had bought Caleigh her patriotic dress before we left home knowing that was the plan. It was a bit of a let down if I'm being honest.

I have to say that we're grateful though. Through all of this Caleigh's team has been cautious and daring. The nurses are so caring and sweet. They are amazed at her recovery. This was a huge and very long surgery. No one expected her to be doing as well as she is. She's bouncing back like nothing has happened. I know for a fact that I wouldn't be as brave and strong as she has been though this. Seriously, she's is my hero.

Tomorrow the hospital will be in a flurry again. There will be people in and out all day. Starting feeds is still up in the air. Caleigh's team and her progress will guide the way.

For now... we stay. 

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