Long Story of Seamus' Health

When I started writing this blog, I said I was not going to dwell on Seamus' illness and I've tried to do that. Seamus is getting the best care available at Johns Hopkins Hospital but his condition has the CF, GI, and allergists stumped and frankly at this point, grasping at straws.

I made the decision to post about Seamus' condition today because this blog has gotten more traffic lately and I'm hoping that somebody out with Cystic Fibrosis (or a CF caregiver) has stumbled on it and they might have some ideas that our doctors have not thought of yet.

Seamus was born in September 2005 with Meconium Ileus, blockages in his intestines. They attempted to clear it with barium enemas and were practically ready to wheel him into surgery, when it finally cleared. That was the beginning of two and a half years of repeated episodes of blockages.

After many, many procedures and tests, here's a list of Seamus' issues (that we know of):

Cystic Fibrosis

Distal Intestinal Obstruction Syndrome which causes Seamus to be hospitalized every 6-8 weeks to get a thorough clean out.

Gastroperesis (very, very slow stomach emptying) which required surgery to widen the opening between his stomach and intestines and placement of a feeding tube into his intestines to bypass the stomach. He does eat by mouth also, but he gets most of his nourishment through 10 hour tube feeds at night.

Gastroesophageal Reflux Disease (and probably also Bile Refux) which causes daily vomiting.

Eosinophilic esophagitis (they're still trying to confirm this one) which also contributes to the daily vomiting.

Allergies to Milk, Beef, Pork and intolerance to Soy. He is on an elimination diet of these foods but with the CF he has to take pancreatic enzymes with every meal and when he's on his feeding tube which are made from PORK.

Redundant Duodenum (extra loops in his small intestine) which alone isn't a big deal but since it's hard for the sticky stool to move through the intestines, this just adds more distance it has to travel.

I'm sure I'm missing something but you get the idea. Here's a list of medicines (at very large doses) and treatments he's currently on:

Miralax, Mucomist, Flovent (with and without spacer), Pulmozyme, Pancrecarb MS4 enzymes, Prevacid, Vitamax, PT Vest

Here's a list of medicines we've tried that didn't seem to help:

Flagyll, Probiotics, Reglan, Erythomycin

He is scheduled for another endoscopy in a few weeks to see if some of the new treatments and diet have decreased the tremendous amount of eosinophils which showed up on the last one in September. But since he's still vomiting every day and having trouble stooling, I'm not very hopeful.

We are incredibly lucky that his lungs have not been very affected. We know living with GI issues is much better for Seamus but it still is very difficult to see our son go through all his daily problems and not be able to help him.

If anyone has dealt with similar issues or has ideas, you can email me directly at jnjcolemans@yahoo.com or leave a comment.

Thanks and now I'll return to writing happy thoughts.

Charmer

Boy, does he have me wrapped around his finger.

Last night, he was full of piss and vinegar. Every night before bed, he goes on the potty. Last night, I left the room for a few minutes and when I came back he had pulled almost all the paper off the roll and had stuffed it in the toilet and/or decorated the floor. As I was trying to clean things up, he started knocking things off the counter.

I was losing my cool when he gave me a giant hug and said "I love you, Mommy". What are you going to do? He's my little porcupine.

Hi Kids!

Today was pretty chilly, in the 30's, but Seamus was a little stir crazy so we walked down to the playground in the park at the end of our street. I haven't been there with him in a few months and I was amazed at the difference in him. He was climbing up and down on everything like a big boy, not a baby. I used to have to stand right next to him as he climbed on things, but not anymore.

A couple really big kids(about 7 yrs old) came over and Seamus literally started jumping for joy. As soon as he saw them, he called out "Hi Kids!!" They were nice enough to say hi back but they had no interest in playing with a 2 year old. He didn't seem to notice. He followed them around and tried to play, giggling at everything the big kids could do. He didn't seem to mind that they were ignoring him, but it broke my heart to see how much he wanted to join in.

It really reinforced the idea that he needs to be involved in more social activities. It's so hard finding the balance between sheltering him from germs and illnesses and making sure he doesn't miss out on being a little kid.

On the way home, he said "That was lots of fun, Mommy" so the day was a success.

BTW, he is kicking ass on the balance beam. Yesterday he was a pro and also impressed Miss Patty with his new somersault abilities.

Brave Boy

I'm very proud of my little Seamus. One of his favorite books is "How I Feel: Scared" and he has discovered that he can be afraid of something and overcome his fears and do it anyway.

Yesterday, we met our friends for lunch and a spin on the carousel at the mall. Seamus usually decides to ride on the stationary sleigh but this time, on the second ride, he chose a horse. He was very nervous and cried but as soon as the ride started, he loved the up and down.

He also has mastered the somersault. I've never seen him so scared as he was at gymnastics when they flipped him over, but at home we did one onto his stuffed Elmo chair and he was hooked.

In fact, he's gotten be quite the daredevil. At gymnastics, he jumps on the trampoline, they jump up and put their legs out in front of them and land on their butt. He's decided he can do this anywhere, including on the hard wood floors at home.

I started this post yesterday and it's just a coincidence I wrote about how brave Seamus has become because it looks like he might be heading to the hospital again. It's been a month since he was last cleaned out and he's started to have the same old symptoms. It's starting to wear me down. The doctors keep trying new things but it doesn't seem to matter, he ends up in the same place. I feel like we put him through so much and are getting no where.

I'm going to try to learn from Seamus and try to be brave. I think I may need to read the Scared book again.

Important

I'm going off topic today and am posting a video I think is very important. I found it on another blog I read, http://cfhusband.blogspot.com/



Many, many CF patients die everyday waiting for a lung transplant and the man who writes this blog has a very sick 26 year old wife who just gave birth to a 1.5 lb baby girl, born at 25 weeks. His wife was on the list for a double lung transplant before she got pregnant and now she's fighting to get well enough to get back on the list. Although it's a horrible situation, the blog is very inspirational. Please watch this video and if you are not already an organ donor, please reconsider.

www.youtube.com/watch?v=Nz33i6prkuQ

Jumping, and Spinning, and Dancing

Seamus has a new activity. He started taking a gymnastics class last weekend. I expected it was going to be a class of 2 year olds rolling around on the floor, playing games. Little did I know...

We pulled up to the Wayne Curry Sports Center about 10 minutes before his class started. It's a huge complex for serious athletes. A track and field event and a real gymnastics meet were going on so Ga had to drop us off at the door and drive about 2 miles away to park. Thank God or we would have missed the class.

We walked into the gymnastics center, which could be used to hold the Olympics, and saw hundreds of kids of all ages running around. The class started with stretching (try getting a 2 year old to do hamstring stretches)and then we were into a serious lesson. The instructor taught us how to spot our kids and what form they should be using.

They had real equipment for the kids to use, albeit miniture size. Seamus excelled at the trampoline and the balance beam. Part of the floor routine was somersaults (within 5 minutes of walking in the door) which he wasn't too thrilled about. The instructor tried to get him to tuck by holding his tummy and pushing on his feeding tube, which wasn't too nice, and just flipped him right over. The look of fear on his face was horrible. He got right over it though and was on to the next thing. He loved the rings and the uneven bars. He called it the playground which I guess it was.

When class was over, he cried and he's been talking about it ever since so we can't wait for this weekend.

Merry Christmas and Happy New Year

Christmas was very nice. Seamus and Mommy spent Christmas Eve drawing pictures and getting ready for Santa. Seamus took the job of preparing Santa's snack very seriously.




We had a lot of fun opening presents on Christmas morning. Seamus helped Mommy pass them out and oohed and aahed over everything. "Ooh pants, Pa!!" Thomas and Friends and Dora were the big hits from Santa. He still can't go to bed without one of them.



Uncle Woody, Alex and Cassidy came for a visit a few days after Christmas and we all got more presents. Diego's Rescue Pack instantly become a new favorite. We all went with Ga and Pa to see "Alvin and the Chipmunks" which was lots of fun. Seamus was very upset when it was over.

We spent New Year's Eve with our good friends Kris, Tom, Makenna and Delaney. Seamus loves playing with them and can't stop talking about it. He got to wear a New Year's Eve hat and blew a horn for the countdown (held a few hours early).