Monday, July 27, 2009

Not much to report

I've been very bad at updating lately. There hasn't been a lot to say. Seamus seems to be feeling better but still not 100%. We went back to the GI doc on Friday and the latest news is he has SIBO, Small Intestinal Bacteria Overgrowth. It's caused by malabsorbtion and slow gastric emptying. It basically causes a lot of gas, discomfort and stomach distention. He's started on two different antibiotics which he'll cycle through indefinitely, hoping he doesn't get resistant to either.

All of this is starting to affect him more than just physically. At the doctor's office, James and Seamus were reading a book about pooping on the potty. Half way through Seamus asked him to stop and told James it makes him sad he can't poop like other kids. And last weekend, when we asked him to go to the pool, he kept crying and saying he didn't want to go. Later he told me, "I want to go to the pool, but I just don't feel like it."

We have had some fun times in between the down times. We stumbled across a really cute little Mom and Pop amusement park, Adventure Park USA, a week ago. We were on our way to somewhere else but that looked more fun, so we stopped. It's in the style of an old Western town. Seamus has been calling it the Cowboy Town.

Seamus and James went to the Baltimore Zoo last week. Seamus was very enamored with the chimpanzees and baby elephant and told me all about it as we snuggled in bed that night. He also felt up to two playdates and a birthday party this weekend so that was a great improvement.

Seamus still amazes me and everyone who meets him everyday. No matter what he goes through, he's always ready with hugs and kisses. I'm so proud of him.

Thursday, July 16, 2009

Deja vu all over again

I guess the title of my last post was wishful thinking. He came home on Wednesday the 8th and by Fiday the 10th he was puking again. I thought it was because our neighbor was nice enough to bring over a dinner for us on Thursday which she assured us had no milk, but apparently that didn't include cheese. We didn't realize until Seamus had eaten half a bowl and then complained that his stomach hurt all night. He threw up in CF clinic the next morning but we really didn't think anything of it until he puked twice on Saturday. My last post I wrote we were going to the Aquatic Gardens but we never made it there because he threw up in the car 2 minutes into the drive. He kept up with the puking until Tuesday when Dr C said he didn't think the milk incident could be the cause and to bring him back into the ER.

So Tuesday night, we went through the whole routine again with the brand new doctors and they couldn't find anything in his x-rays or blood work. They came up with the idea that he caught some kind of stomach bug while he was in the hospital but I don't buy it. He was only puking when trying to swallow or use his feeding tube which is exactly how he was acting before his eosinophilic esophagitis was diagnosed. And I've never seen a stomach bug last a week. I think the milk really caused his EE to flare up which had a whole domino effect.

The good news is he hasn't thrown up in two days but he is very lethargic and doesn't ever want to leave the house. He still has issues with swallowing and has no appetite. So we haven't been up to anything fun. I'm not going to jinx it by saying what our plan is for tomorrow.

I want to include at least something positive so here's some pictures of the July 4th weekend before all the hospital stuff began:

Saturday, July 11, 2009

Back to Normal

Seamus came home Wednesday evening and has been just relaxing since. He had a CF clinic appointment on Friday. I had missed so much work that I couldn't go so James took him alone. He's gained a pound and a half in 2 months which is great considering he hadn't eaten anything for 4 days while he was in the hospital. His coughing has increased a little probably due to the beginning of an ear infection so we won't be going to the pool today. After the appointment, we always like to take Seamus on an "adventure" so they went to see "Ice Age 3". Seamus gave it a thumbs up.

We may go to the Kenilworth Aquatic Gardens today. It's a beautiful place right in the middle of an urban area that most people don't know exists. He can run around but not be around a lot of people which I think is what he needs.

Wednesday, July 8, 2009

Day 4

It's day 4 of the hospital stay and he's still pooping. They plan on doing another x-ray this morning to look at the progress. Yesterday, he passed what looked like gobs of rubber cement. I think that had to be good to get that out.

Seamus has been doing well, considering everything he's going through. To top it off, he now has conjunctivitis in both eyes and the right one is almost swollen shut. The poor guy. Because they've pumped 10 liters of Go-lytely into him so far, he's swollen up like a balloon. Between that and his eyes, he looks like a washed up prizefighter.

I wasn't kidding about Toy Story. He's watched Parts 1 and 2 at least 5 times each so far. It makes him happy so I don't complain. He did watch Snow White once too and I've never seen him laugh so hard. Last night before he fell asleep, he was lying in bed in the dark giggling and talking about Dopey falling down.

Hopefully, my next post will be from the comfort of home.

Monday, July 6, 2009

Update from the hospital

Well, it finally caught up with him. All these months of home clean outs that never fully cleaned him out has left Seamus almost totally blocked and back in the hospital. It never fails, every July he ends up in the hospital. For those who don't frequent hospitals, that is the worst month to be in one. All the new doctors start and there is lots of confusion. Last year, we had a nightmare hospitalization but this year, it's been okay so far.

At first, we got quite a scare because when I called Seamus' GI doc and he heard Seamus sobbing in the background, he said "That is not the Seamus I know. Get to the closest hospital and get an x-ray now." When they looked at the x-ray, we were told he had a full obstruction and needed surgery but that hospital didn't have a peds surgeon so we were going to be transferred to Hopkins, which is our normal hospital. They wanted us to go in an ambulance because if he "coded out", they could help him. That was pretty hard to hear but after waiting 4 hours for them to come, we decided we'd risk it and drive the 40 minute drive ourselves.

When they looked at the x-ray here, they said it wasn't completely blocked and no surgery was needed. This has happened to us on numerous occasions. I really think they need to have better classes on reading x-rays in medical school because no one seems to agree on what they are looking at. Seamus was put on the full blown Go-lytely treatment to break it up. He's doing well, just hanging out watching Toy Story over and over and over, pooping, lots of pooping and charming all the nurses.

Prior to all this, we had a nice holiday weekend. On Friday, we went to the University Town Center for a picnic lunch and Seamus ran through the fountains with lots of new friends. Then we came home and made brownies topped with bright blue frosting, four kinds of sprinkles and jellybeans to get ready for Uncle Rick's visit.

Seamus and Uncle Rick spent lots of time playing football, tennis, the Wii ... I think Uncle Rick had a hard time keeping up. On Saturday, we started at our town's Fourth of July celebration and then headed over to our pool. It would have been a really nice day if Seamus hadn't woken up at 11:00 PM crying in pain, begging us to turn off his feeding tube.

Hopefully, we won't be here too much longer but Seamus has said he will not go home until we get the Toy Story DVD.