Made of Gray

Day 3 Scope Results

Holly D Gray7 Comments
I didn't get to update last night because Caleigh was up screaming, crying and arching until 3:30am. We finally got the right dose of morphine going and she fell asleep. We did too...no morphine needed.

Caleigh's surgery went well. She now has her 4th broviac (central line, CVL) in and running. The pre-procedure labs indicated that she wasn't clotting fast enough so they took precautions for that and everything worked out ok. This is due to a malabsorbtion of Vitamin K.

The scope showed us a lot of information.

Caleigh has:

- 1 Ulcer and probably more that they couldn't get to with the scope

- A Hiatal Hernia

- Inflammatory Response (small bumps throughout the intestine)
The cause is pending biopsy, but probably bacteria

- Several very small narrowings in between large loops of bowel

- Caleigh's Villi bleed when touched with the scope due to irritation

- There is a small "dimple" protruding from the side of her esophagus

- There are a specific type of vein located close to a narrowing that needs to be removed. They are common with Gastroschisis, but are prone to bleeding.

Caleigh's stomach is very small

- We all have a Pylorus Sphincter in between the stomach and small intestine. This valve slows down the food leaving the stomach. Caleigh's isn't there anymore. The previous scope showed a very delayed valve and now it's unrecognizable. This means that she will never tolerate bolus feeds. She will have to continue on drip feeds. This isn't something surgery can fix.

- The surgeon believes that the discoloration on Caleigh tummy is a possible incisional hernia. This is the least of our worries at this point.

We are still waiting to see our surgeon to talk about options. He has a big surgery this morning so we won't see him until this afternoon.

Our GI feels like she needs another STEP procedure and fix the things that need/can be fixed. Just when is the question. At this point it's not an emergency type of thing. The TPN will give her the nutrition she needs. So I think Eric and I have decided to take her home to get settled in with all the TPN stuff and then schedule something. We also need to get her clotting factor back to normal before they do anything. We'll see what the surgeon says today.

I'm not sure when we will be able to go home at this point.

The last STEP procedure had us in the hospital for a month. Something none of us are looking forward too.
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