Made of Gray


MLK Endoscopy & Colonoscopy

Raising the Rare ChildHolly D Gray6 Comments

I've been more limited on all the medical information that I put out for Caleigh. She is 7 now, growing up and in all honesty things have been chronically stable. She is still dealing with everything that we left off talking about two even three years ago.

She still has botox every three months for her her tight muscles. Her last dose was last Thursday. It's a miracle drug for Caleigh. Her hip is still 50% out of socket with a possible hip surgery looming in the years to come. She still has dumping syndrome, but we are able to control it a little bit better now with pectin and slower feeds. Caleigh still doesn't tolerate any foods and this is mostly because she doesn't have the pancreatic enzymes to break them down. She gets medications three times a day which is nothing compared to the past. 

We choose to go about our day, our weeks and months living the fullest life that we can. We've made a good long run without getting a new diagnosis. That run stopped yesterday.  

Back on October 8th of last year, Caleigh had a scope to take care of the ulcerated granulation tissue that developed underneath her g-button stoma. This has been happening for awhile now and it is extremely painful for her. This is her body's way of rejecting the foreign object. During this scope, Caleigh wasn't cleaned out very well. The enemas that we did to prep for it really didn't clean her out. So it was hard for our GI to see everything, but the g-button issue was resolved for the time being by cauterizing the tissue. 

Flash ahead to this past week, Caleigh had three days of intense black liquid stool. Black stool typically means that there is blood in the upper area of the intestinal tract. There was a lot of blood. We went to Caleigh's GI, did blood work and he fit her in for an urgent scope which we went to yesterday. 

We spent Sunday doing a miralax prep that kept all of us up all night, but surprisingly Caleigh did a good job and her body didn't dehydrate like we feared might happen. She had a good 24 hours without Elecare and only got unflavored Pedialyte. She was definitely cleaned out this time.

When our GI went in yesterday afternoon, he again found granulation tissue around her g-button stoma. This is basically burned off to clear the area and start over again. There isn't anything that we can do about this. It will come back. This tissue does bleed, but nothing like the bleeding event that Caleigh had the week before. 

During the endoscopy portion he found a nodule that he removed and biopsied. When someone is on long term anti-acids like Caleigh, it is expected. It's a hard balance, but Caleigh definitely needs the Nexium because her pyloric sphincter stays open all the time. He reassured us that he didn't believe that it was cancer, but we will be waiting on the biopsy results to take our deep breathe. 

When he moved on to Caleigh's colon there was a lot to be seen. There were "cherry spots" which indicate that there has been active bleeding recently. 

There were large areas of angioectasia which basically look like varicose veins inside the intestines. These blood vessels are a result of the many times that Caleigh's intestines have been reconnected. These sections create a dead end for the blood vessels. They get to a certain size and rupture. Which is probably what happened last week. Caleigh's blood work showed that she is borderline for needing a transfusion. There hasn't been a time in the last seven years that she didn't have blood in her stool. This event made big difference though. 

The plan is to meet with a specialist that can do a type of angiogram where dye is injected into the veins. From there this specialist can see what type of veins we are dealing with, where they go and if they can be closed off with a coil method. The details of this scenario are vague right now.

The other fun find of the day was a stricture. We've known that this one existed and Caleigh's surgeon was aware of it several years ago, but at the time she was doing so well that we didn't want to rock the boat. The tiny hole, pictured above, is the point that everything that has gone through her stomach and intestines needs to tunnel through to exit her body. It's about 35mm across. It's tiny. On the other side of this stricture is fibrous tissue. Meaning that as the scope touched it, it started bleeding. Caleigh cries every time she stools especially if it is even remotely formed. Now we know why. From there the journey continues on to another larger stricture pocket. We will be doing a barium enema to look at these strictures on x-ray. GI will be talking to surgery and showing them these images as well. 

So for right now there is a plan to do more tests, keep an eye out for anything urgent and wait for results. Caleigh has had a rough day recovering from the scope. This has been the hardest one so far. We are hoping for a smooth evening to come and we know that tomorrow is a bright new day. 


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