Monday, June 29, 2009

Back to reality

Seamus is having a very hard time getting adjusted to being home. His sleeping pattern has been crazy. The first few mornings after we got home, he woke up very early but then on Sunday he slept until 11 AM. This morning he got up at 4 AM. Right now as I write this at 11:15 PM, he is laying wide awake in his bed. While we were away, his medications and treatments were not always on schedule either and he's definitely feeling the effects of that. He started a new cough today and has been complaining of a tummy ache.

So we have not been doing very much except relaxing at home. Seamus didn't even want to go to the pool over the weekend. I hope he just needs to rest up and he'll be back to his normal self soon.

Thursday, June 25, 2009

Los Angeles Trip

We had a great time although you knew we wouldn't get through this trip without a visit to the ER (more on that later).

Seamus seemed to be doing better a few days leading up to the trip but as we were waiting to board the plane in Baltimore, he vomited all over the Food Court. So we quickly got him changed and onto the plane where things went very smoothly. He loves to fly and was such a good boy during the 7 hour trip. After landing in LA and getting our rental car, we weren't on the road more than 10 minutes when he vomited again, huge amounts all over the car and rented car seat. We thought we were in serious trouble then.

We took it easy that night and got ready to go to Disney the next morning. During breakfast in our very nice hotel room, Seamus let loose with the puking again. He said he felt good so we continued with our plans. Disney ended up being great. The weather was a little cloudy and low 70's which kept local people away but was great for us. We didn't stand in line more than 15 minutes for any ride and Seamus got to meet and hug almost all the Disney gang: Mickey, Minnie, Goofy, Winnie, Tigger, and Chip N Dale. He was thrilled but still talks about how we missed Donald.

That night we headed up to LA where my conference was. We were all exhausted from jet lag and all day at Disney so we just wanted to go to bed. Ha ha, not in the plans. James got us each a bottle of beer for dinner and then realized we didn't have a bottle opener. He decided to use his car keys and ended up slicing his finger open across the base of his finger nail. The blood did not stop gushing so we called the hotel doc who thought he might have sliced his artery. We had to go to the ER immediately. By now, it was 8:30, or 11:30 by our internal clocks, and Seamus still hadn't eaten dinner. We all packed up and went to the ER. It ended up okay, not the artery but James needed stitches and 14 shots in his pinkie finger so they could tear his nail off. Yuck! After leaving there and getting his prescription filled, it was midnight, or 3 AM to us.

The rest of the trip was a little less stressful. We went Venice Beach and the Santa Monica Pier, spent time with some long lost friends and James and Seamus hit Griffith Park and the Zoo. It was fun but I'm glad to be home.

Here are some pix of our great time:

Monday, June 15, 2009

We had a nice weekend. Seamus went to two birthday pool parties and had a great time. He's also getting excited about our upcoming trip to Los Angeles and Disneyland this weekend.

The change in his feedings is still not going well. He has not slept through the night once since we've made the change and his appetite has severely decreased, I think partly because his stomach hurts and partly because he's full from the extra tube feeds. His stomach has been distended and gassy because he's not getting enough enzymes at night and yesterday he had a huge watery accident right in the middle of family room which embarrassed him terribly. He almost started crying and said "This can't happen at Lilly's birthday party!" He actually asked to wear a diaper which he hasn't done in the daytime for months.

I'm a little worried because every time we plan a trip, something seems to happen. We have lost hundreds of dollars in canceled plane tickets and hotel rooms. I'm keeping my fingers crossed and we're still tweaking the regimen. Hopefully by Friday, he'll be doing better.

Next post, I promise, no more poop talk!

Wednesday, June 10, 2009


Yesterday, Seamus went to the GI doc to have his tube looked at. It is infected so they took a swab to culture. But the big shock was his weight has gone down again. The last time he was weighed at GI clinic was 6 months ago and he's back to the same weight. Considering he already has a feeding tube, it seriously concerned Dr. C.

He gave me the serious talk about how his weight will affect his lifespan and he has to grow. I knew all those things but it just threw me for a loop because I walked in there expecting him to just prescribe some new cream not sit with him and the nutritionist for half an hour coming up with a new game plan.

So the end result is we have to increase his feedings by two hours and also increase the hourly amount. We have to work that around his 3 Miralax doses he gets through his tube throughout the day. We tried it last night so he got Miralax at high speed, then his feeds for 10 hours, then another Miralax dose at high speed this morning. This all resulted in a big vomit, which kinda defeats the entire purpose.

And we haven't even figured out how to handle the enzymes. He gets 9 enzymes before his feed and 9 after but now since he's getting more food, we may have to wake him up in the middle of the night to give more. I'm afraid if we don't, his stools will get even stickier and he'll end up with even more blockages, which again defeats the whole purpose.

Ugg, I'm just so frustrated. We're going to have to tweak it each day until we figure it out. I'm also worried because I think Seamus started understanding some of the scary stuff yesterday. He could tell I was upset and he even though he didn't understand all the dire stuff Dr C was saying, he seemed uneasy too.

Sunday, June 7, 2009

I've got a golden ticket

Last night, Seamus, my mom and I went to a local elementary school production of Willy Wonka and the Chocolate Factory. Seamus is hooked.

As soon as the kids stepped on the stage, Seamus lit up. He clapped harder than anyone in between scenes and laugher louder, especially when Charlie burped in the Fizzy Lifting Drink Room. He kept leaning over to me to kiss me on the cheek and say "Thanks, Mommy, it's a great show!"

But the greatest thing was WonkaVision. He could not stop talking about how the boy was on the stage one minute, and then, magically, he was in the tv. "Mommy, how do I get in the tv so everybody can watch me?" I've been telling you he's a ham.

BTW, I talked with the GI doc on Friday. He wants to see him on Tuesday if the site doesn't look better. The Bacitracin seems to be helping some, but it's still kinda gross.

Friday, June 5, 2009

Another g-tube question

This is a question to g-tube users and/or caregivers. Others be forewarned, it's pretty gross.

Seamus has had his g-tube for more than 2 years now and really, other than having it needed to be replaced about 8 times for various reasons, he really hasn't had any major problems like infections. But the last few days his stoma has been getting pinker (which has now spread) and last night he really started to complain that it hurt when I touched it, especially when I try to rotate it. It also had some yellow gunky stuff oozing out.

We usually put a mixture of Maalox and Desitin on it and yesterday I did Bacitracin but they haven't helped. He also has started complaining about pooping hurting again and gagged on his enzymes this morning which could be completely unrelated.

I have calls in to the GI nurse and doctor to see if he needs to be seen or just needs some stronger antibiotic cream but sometimes it takes a while to hear back. Since we don't have lots of experience with this, I don't know if it's okay to wait or if we should try to get him in to his pediatrician right away. Any suggestions?

Wednesday, June 3, 2009

Just cause...

I haven't posted any pictures in awhile.

Monday, June 1, 2009

New Song

Seamus' latest favorite song:

Was a farmer had a dog
Underpants was his name-o
and Underpants was his name-o

I'm not kidding, we're seriously obsessed with toilet stuff in this house.