Short Bowel Syndrome Barium Enema

This morning we took Caleigh in for her barium enema. 

They used water soluble barium upon our request (I highly recommend it if your ever in the need for barium) because of Caleigh's history with intestinal perforation. About 2000ml of barium was gravity fed into her. That's way more than she gets in fluids a day. 

Caleigh did good during the whole thing. We played her music and she focused on that instead of the uncomfortableness. 

I could quickly tell that Caleigh's intestines are very dilated. There are large sections of bowel with presumably the strictures in between, but we weren't able to see them. These are areas where bacteria thrive, nutrients aren't absorbed and the walls of the intestines are fibrous and raw. This was one of the main reasons Caleigh originally had the STEP procedure all those years ago. Caleigh's anatomy is so different that we knew that we probably wouldn't find anything specific. The radiologist preforming the test questioned the actual reason behind doing it. His attitude wasn't the best, but he did his job. 

After the test was over, we sat Caleigh on the potty and the majority of the barium came out. She was shivering, clammy and exhausted while it was evacuating. We did one more x-ray (pictured below) and then we were free to leave. 

Caleigh's tummy hurts and she tells us this everyday. She is scared and worried and I wish I could take those fears from her. Please pray for her understanding and peace with all of this. 

Eric and I could use support as well. This is definitely the "marathon not a sprint" metaphor. Seven years ago...even three years ago, I was on top of my game. I knew the next best thing, I knew who to talk to where and I was ready no matter what came our way. I'm now less patient with those that work with us. I'm more emotional and anger easily. I'm worn out by not being able to heal Caleigh's pain, stop the crying, and the physical demands on myself are finally catching up. This feeling of exhaustion is often times paired with thoughts of the future and I fall back to the reality of our lives. Staying positive, laughing it off and forever being ridiculously sarcastic is sustaining us. I'm glad we still have even an ounce of those feelings left at this point. For all of these feelings though, we wouldn't trade any of it. 

This coming Tuesday is our appointment with the surgeon. If you remember a few years back Caleigh's surgeon moved to Tennessee. We were pretty devastated by this change, but at the time we didn't need surgery. This new(ish) surgeon knows Caleigh and has been around since she was born. I'm hoping we will be on the same page come Tuesday. 

Until then, we would love prayers and positive thoughts for strength, less pain, clear decisions and the emotional well being for our little family. We really do appreciate the support that everyone offers. It is truly a gift to have this community in our lives. 

A Weekend in the Country

This past weekend we took Caleigh up to our land to enjoy the nearly 70 degree weather and sunshine. We disconnected and it was totally needed. Caleigh napped in the hammock, we ate a picnic lunch, backpacked and soaked up the complete silence. It was good for this momma's soul and I've vowed to make it out to the country more often. 

Caleigh is feeling better after her scope. We continued giving her a capful of miralax a day for about 3 days after her procedure, but she tipped the balance and started stooling way more than normal. So we have discontinued the miralax for now. 

Caleigh has a barium enema scheduled for this Wednesday morning as well as an appointment with her surgeon next Tuesday to follow up on the scope results. 

Everything isn't urgent right now and for that we are grateful. 

Today we returned to life as usual. Work, therapy, school and running around. 

I think right now we are culling information, getting the best look at everything that is going on and playing the denial game while we can. 

MLK Endoscopy & Colonoscopy

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. 

First Trip to the American Girl Store

How on Earth did it take us so long to visit the American Girl Store? I'm pretty sure this is seriously the most magical place, close to our home, for a little girl under the age of 12 .... and their moms, sisters and aunts.

It's that cool. 

We were warned by many that this was going to be a crowded, three hour at the least excursion.

When we arrived, we literally walked into an empty store very surprised. Apparently, the Thursday afternoon before Christmas and while school is still in is the time to go. 

We headed straight to the doll salon to get Noel's hair done. It is really a cute concept and since there was no one around Caleigh had time to think about the hair style, ribbon color and of course, watch in wonder. 

American Girl via Caleigh's Corner

Since Noel's hair is layered (who knew) there were only certain styles that could be achieved. Caleigh was given a notebook with photos of each style. I pointed to each style that was on the page and gave it a corresponding letter... A,B,C, etc. 

Caleigh chose pigtails, letter D.  With purple and green ribbon. 

So I paid $15 to get pigtails, which I thought was a bit of an annoyance until I recently tried to redo the said pigtails, and I was terrible at it. $15 was worth it! 

Caleigh bought a new outfit with pre-Christmas money and then we made our way to the Christmas tree and ate dinner off of the ice rink. We had a great time even though the hustle and bustle of Christmas shoppers was intense. This is definitely going on our list to do every holiday season. 

American Girl via Caleigh's Corner