Made of Gray

The Weekend Before Surgery

Raising the Rare ChildHolly D. GrayComment

Tonight, I'm writing from Caleigh's hospital room in Boston. It's quiet and dark. To my left is a beautiful view of the city and to my right is our sweet girl, curled up with her sock monkey, fast asleep. 

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Our road trip started on Monday morning of this week. We stayed outside of Nashville the first night. The second, we spent in Ohio and the third night we opted to stay a couple of hours outside of Boston. By Thursday we had checked into family housing and made it to Caleigh's clinic appointment. Caleigh did great during the 1900 mile drive, but we were all a little unsettled and restless by the time we arrived. 

Caleigh's clinic appointment went well. Her surgeon is hoping for a quick resection of the narrowed area, but he is also assuming this won't be easy. We went over several scenarios and discussed possibilities. They'll be prepared and ready. Right now they are calling this exploratory surgery. This is mostly because they won't know until they are in there as to how extensive the adhesions and narrowings are. 

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After the clinic appointment we went back to family housing where Caleigh cried, screamed and yelled for several hours. She was exhausted, angry and nervous. I don't blame her. We finally put her in timeout and the tantrum stopped. We need to stick to our guns and discipline routines no matter where we are.... lesson learned. Thursday was a long day for all of us. 

Today we got up early and headed back to the hospital for an abdominal ultrasound and a fibroscan. We finished those tests, went shopping, ate lunch and then returned to the house to pack up Caleigh's hospital bag. We checked into the hospital a little after 2pm. During admissions Caleigh had a meltdown, when we walked up to the floor she had a meltdown, and anytime someone new came into our room she lost it. We have ChildLife involved and the nurses have been great about clustering her care and not upsetting her. At 4:30 we walked back down to ultrasound and did a doppler of her greater veins just in case she might need a central line during surgery. Tonight we left the floor and walked around a lot. This is new for us since we were all so sick and quarantined to the room last time. We went to the hospital garden and watched baby bunnies chomp on grass and bounce around. We'll definitely make the garden a regular visit while were here. 

Tomorrow, they will draw some labs to see if Caleigh might need an extra day of hydration fluids. Other than that, we talked about drawing in her new art journal, getting dressed up and putting on some of mom's makeup and leaving the room as much as possible. I'm hoping tomorrow is a much better day for all of us. 

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We can definitely feel the love, prayers and good intentions sent our way. Thank you again. 


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