Made of Gray

The Great Escape - Discharge Day

Raising the Rare ChildHolly D. Gray3 Comments

Two days shy of one month, Caleigh was discharged from the hospital. Late yesterday, Friday, we packed up and headed out the door around 5:30pm. 

Over the past week, Caleigh's feeds were able to be advanced to 44ml at a continuous rate. She had Pedialyte at 20ml on Monday, July 4th. On Tuesday, late afternoon, they decided to start full strength feeds at the 20ml an hour that she was already at. Early the next morning Caleigh had half a dozen stools and one after another before 10am. By the time the team made rounds, Eric and I had decided that we should move slower. The team agreed. 

The Great Escape via

The day that she started feeds it was decided to do it without her normal pectin added in. We add pectin to Caleigh's Elecare JR formula to slow it down in her tract and to keep the symptoms of Dumping Syndrome at bay. They wanted to see how she would do without it. 

So when she started stooling a lot everyone decided we would add back in the pectin at 3%. Her regular amount is 3.5% which we'll move up to eventually while outpatient if she seems to need it. If her stooling gets better we will start to back off of the pectin hoping that the dumping syndrome resolved due to the surgery. 

A few hours later we started the pectin and the stooling slowed down. Two thoughts here. One is that after you haven't been fed in so long, your intestines seem to overreact producing more stool in the beginning. The other thought is that she needs the pectin and that her dumping syndrome hasn't resolved. Either way it slowed down. 

We went up by 5ml every 12 hours after that day. On Thursday night Caleigh was 14ml away from goal. We asked to go up by 7ml that night and 7ml on Friday morning. She made it.

This entire week they were weaning her off of IV nutrition. She was off of it for 4 hours the first day, 8 hours the second day and on Thursday night she was hooked up for 12 hours. She came off of it completely on Friday morning. Caleigh was tolerating everything. 

Normally they like to keep patients at least 24 hours after going off of TPN. Our planned discharge was Saturday morning, but we pushed to leave late Friday. Everyone in surgery agreed. The PICC line was pulled, we packed our stuff and walked out the door. 

Caleigh slept beautifully last night. We all did. We all woke up together in the same apartment. We're cuddled up on the couch, sipping tea and coffee and watching the Tour de France. It's gently raining outside and it's not supposed to get above 66 degrees today. My gratitude, happiness and love is overflowing. We made it through. 

Over the next two weeks we will be enjoying the area, taking day trips and making our way to clinic appointments here and there. My updates will be fewer here, but I'll continue to check in. Let Caleigh's summer begin! 

Thank you again to everyone that provided prayers, thoughts and support during the past month and throughout her life. We appreciate it so very very much. 

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