Amber’s Crohn’s Story: There is a Smell to Death — Part 2

Earlier, we shared Part 1 of Amber’s Crohn’s story, entitled Living With Crohn’s: I Thought I was Watching My Son Die. Here is the dramatic ending to Amber’s story.

November 30, 2016

It’s scope day again. Braxton was sicker than he has ever been and the doctors have decided they want to do another colonoscopy (his third scope in a year and a half, and only 6 months from the last scope). The doctors asked us to bring the Humira to the hospital, so they could give him the first round while he was asleep. They said the first round would be hardest on him because it was going to be FOUR injections in his legs.

While he was in the procedure, I nursed our 2-month-old baby and snuggled him tight, praying that he would never have to live with what his brother was living with.

Our doctor finally came in to update us. He explained that he put an NG (nasogastric intubation feeding) tube in to Braxton’s nose to help nourish him, since he refused to eat. He had already dropped down to 64 pounds in weight.

He said Braxton’s disease had spread and it was worse than it was just 6 months prior. He showed us images of healthy tissue that had now become diseased. He was concerned how aggressive the disease had become and was spreading, even while on Remicade. He put Braxton back on 40mg Prednisone and did the 4 Humira injections, while he was under anesthesia. They also started him on a pretty high dose of iron, since he had had an active bleed for a while.

That night, my mom slept over, since I was nursing a 2 month old every 2 hours. She woke me up early in the a.m. to tell me Braxton had accidentally pulled his NG tube out in his sleep. We had to go to the GI office the next morning to get it put back in. Watching them put this tube up Braxton’s nose, we both had tears in our eyes. I’ll never forget that day.

I swear it changed him. It’s like it sucked the life out of him. He was quiet, very quiet. He looked defeated and withdrawn. That night when he went to sleep, I laid next to him on the floor because he refused to get up in his bunk bed. His heart was pounding out of his little chest. He was asleep, but I could see his body working so hard.

That is the night I broke.

I cried my heart out while holding onto him.

He had this smell to him too. I’ve never told him this and I’ve only ever discussed it with my mother and my husband, but there is a smell I associate with death, that’s all I could think of.

I thought I was watching my son die.

After a while of crying and holding him tight, I crawled into bed with my husband and he literally rocked me like a baby. I know we were both scared, but we needed to remain brave and strong for Braxton.

After a few days, he was able to play a board game with the family for a bit. Then he had a smile on his face again. Despite being so weak and in pain, he still wanted to hold his baby brother every day.

Some days it seemed to be the only thing that would put a smile on his face. After several weeks, Braxton was still pretty weak, in pain, and having diarrhea. Our doctor said he wanted to send Braxton to Cincinnati Children’s Hospital for a second opinion. We were thankful to hear that. We were all exhausted and ready for Braxton to become himself again.

We couldn’t get Braxton to leave the house for anything

December 15, 2016

Between breastfeeding an infant, tube feeding Braxton, and all of his bathroom emergencies, we didn’t leave the house for months.

Honestly I think I had some postpartum and depression from everything. We couldn’t get Braxton to leave the house for anything. One night, he did agree to drive around the block to look at Christmas lights. I remember my husband having to carry him to the car and propping him up on a pillow. He also had to have nanny ride beside him and hold his hand. He was just so weak and terrified of everything.

Christmas came and Braxton opened half of his presents while lying down on the couch.

We Started Talking About The Specific Carbohydrate Diet

Things slowly started to die down in January. The numbers of bowel movements decreased and were more like three times a day instead of 15 and 20. We finally received our appointment with Cincinnati Children’s Hospital. We met with one of the Crohn’s UC GI specialists and went over everything. The doctor decided to leave Braxton on the Humira and start tapering off of the Prednisone. They also wanted to add in 50,000 IU’s of Vitamin D.

He also talked to us about a diet called the Specific Carbohydrate Diet (SCD) that was having great success with many Crohn’s patients. It sounded pretty intense, but at that point, we would have tried just about anything. We also decided to leave the NG tube in because the doctor felt it was helping Braxton heal.

When we left Cincinnati, we began to research all we could about SCD. Braxton was pretty excited about it and would read along with me. The diet basically starves the bad bacteria in Braxton’s gut (which cause inflammation) by eliminating all foods with grains, gluten, and sugar. We also can’t eat anything with complex carbs (rice or potato’s) or preservatives. But, even with these restrictions, there were a ton of great recipes for us to try and we started making all kinds of new yummy foods. Even Braxton took an interest in cooking sometimes.

I Never Want My Child to Feel Ashamed About His Disease

We had to slowly build him and his stamina back up. We convinced him to go out in public a little at a time. He was embarrassed about the NG tube in his nose and would wear a hoodie and hide his face as much as possible. He started to go outside a few minutes at a time. We would walk around the driveway once or twice, holding hands and just this alone would exhaust him. He had bad leg cramps as well.

One day, we talked Braxton in to going to the Aquarium. This day will forever be embedded in my mind. We were standing in front of a massive stingray and his tail was missing. He started to swim and come closer to us, but then went and hid under a crate. I commented on this to Braxton. Braxton looked at me and said “mom he’s going to hide because he is ashamed like me with this tube on my face”. I dropped to my knees in the middle of the aquarium and had a very serious heart to heart with Braxton.

I never want my child to feel ashamed about his disease.

Slowly, but surely, we have built Braxton back up to where he has been able to ease back into to school for the last 2 months of the school year. He plays outside now like a normal child. He eats meals and does a nighttime feed with his pump. He even finished school on Honor Roll. Could any of this have anything to do with the SCD DIET? I suppose only time will tell. For now, the plan is to have another scope done to see where we go from here.

June 13, 2017

I have great news to report. We had another scope today and Braxton is healing! I did a live update via Facebook to share the news.

In the mean time, we will continue feeding our son healthy, whole SCD food and trying to give him the best quality of life we possibly can. We are very thankful to the SCD Diet and all of our friends and family for their support.

Caleb’s Cooking Company provides healthy organic fast food for children that is gluten & grain free, with no added sugars or preservatives. We also provide a community where parents and children gather to gain emotional support, insight and knowledge around IBD and other autoimmune diseases.