Home Again

Seamus was discharged on Saturday afternoon with a PICC line to finish the antibiotics for his pneumonia and a treatment plan for the GI issues, which still seems a little uncertain.

They were shocked that in less than 24 hours between the colonoscopy, when he was clear, and the CT scan, he had gotten all blocked up again. He has colitis, which is inflammation of his intestinal tract, that is making his constipation worse, and then the constipation is causing more inflammation. It's like the chicken and the egg. They are treating the colitis with anti-inflammatory drugs but so far, he is still in pain and not pooping very much. We also have to give him a steroid suppository every day for the rectal ulcers which is pure torture for him. It breaks my heart to hear him beg us each day not to do it. Finally, he has H. Pylori, which causes peptic ulcers, but he has it in his intestines. The treatment is pretty heavy duty so they want to wait until the pneumonia treatment is done. So basically, the pneumonia is the only thing that is really under control.

Tomorrow, Seamus starts pre-school again. It's only a couple hours a day, 3 days a week so we are hoping he can handle it. He's really looking forward to it and we would hate to have to pull him out.

Here are some pictures of our latest vacation in Williamsburg and VA Beach. I'm so glad we could fit it in before he went into the hospital.

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.

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:

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!

Mini vacation

So we just got back from a much neeeded little break. We went to New York to visit my father and family and catch up with friends. Seamus enjoyed himself, although he is the youngest of my friends' kids and found it hard to keep up with the big kids sometimes. Although the majority of time he was definitely the ring leader.



Ga came with us. It did her good to get out of town and visit with friends she hasn't seen in almost a year. It was hard for her to go to all the places she went with Pa but I think it helped her to talk about him with all their friends.

We spent some time in the mountains at our friends, Deb and Scott's, cabin. It was the first time Seamus had been (pseudo)camping and he seemed to like it, although he kept asking us when our trip was going to start. Before we left, we were worried about how he would handle the mustiness of a mountain cabin and things like campfires and swampy places but we were careful and it all worked out.

On another note, we were looking at pictures of Grandma Jo's kitty who died a few years ago and when we told Seamus she was in heaven, he said "Then Pa can visit with her" so I think he's handling Pa's passing okay.

Nice Days

Seammy and I decided to take it easy today. Since it's raining, we can't go to swimming class so we slept in and then Seammy joined me in bed. We were there for hours reading books and playing hide and seek under the covers. I feel like I'm coming down with a cold and it was the hardest thing to stop myself from smothering him in hugs and kisses.

Last night, I came home from work and we spontaneously decided to go out. The town next to us has a new little downtown area with a big fountain to run in and all kinds of new restaurants. Seamus loves it. While Mommy and Daddy ate, he played with the kids and got soaked. I knew he wouldn't eat much dinner but we let him have ice cream (sorbet for him) anyway. Isn't that what summer's all about?

Here are some pictures of our Chicago trip:

Chicago

We survived Chicago without any hospital visits, although we had two close calls completely unrelated to CF. Getting there and getting back were both two very long stories but in between we had fun.

We started our visit in Millenium Park which is great for kids. The Crown Fountain was Seamus' favorite. It's two huge structures with faces of Chicagoans displayed which every few minutes "spit" a stream of water which kids play in along with waterfalls. Seamus also got to go to his first real concert. Justin Roberts, who I had never heard of but apparently is very popular, was performing an outdoor concert. Seamus got right down in front and experienced his first mosh pit with all the kids who knew all the words and were dancing like crazy people.

We spent a day at the aquarium and got to see the dolphin show, baby belugas, and lots of starfishes just like Patrick.

But the biggest attraction was our room. Seamus never wanted to leave. It was nice (nothing too extravagent) but it had a big comfy bed where he got to watch movies, eat bagels and sleep with Mommy and Daddy. I think he was still pretty worn out from being in the hospital the week before because he wasn't as energetic and crazy as usual. He needed time to rest up and eat. His appetite was great and he couldn't get enough carbs. He ate tons of french fries, bagels, and pretzels. We were happy to see him eat anything after the previous few weeks.

Trains, Trains and Smorgasbords

I've been very lax about posting lately and there's so much to talk about.

We've been trying to get a weekend away for as long as we can remember and last weekend we were finally able to do it. James, Seamus, and I took a trip up to Amish country in PA. The main event was a train ride with the Easter Bunny on an antique steam engine. It was a very nice trip into the PA countryside. The EB did make an appearance but it was pretty quick. Seamus was hoping to play with the Bunny ("Will he play Wonder Pets with me? Will he, will he?" Repeat continuously for a 3 hour car ride) but she was too busy seeing all the other kids. He did end up getting a lollypop out of the deal which was very exciting and he met some new friends. There was a little boy next to us who actually made Seamus seem like a quiet shy little kid, which is pretty hard to do.





We stayed at the Hershey Farm and Inn in a "rustic" room that Seamus declared was "awesome" as soon as we walked in. Daddy didn't quite share in his enthusiasm. Seamus spent the first 10 minutes running around the "awesome" room counting in Spanish very loudly. (I know, very odd but somehow it felt right.)

Then it was time to take a walk on the farm with Mommy while Daddy took a much deserved nap. We saw ducks and geese, who weren't as thrilled to see Seamus as he was to see them, and lots of goats and chickens. They also had a really cool playground where Seamus went on the big kid slide all by himself.

That night we went to a huge smorgasbord thinking there must be something for him to eat but apparently Amish people don't have milk, pork, and beef allergies. Everything was either in a cream sauce or had big honking pieces of sausage in it. Somehow we got some food in him while Mommy and Daddy rolled out of there.

The next day we went to "Chocolate World" in Hershey. Again, the allergies caused some issues. Seamus couldn't eat any of the chocolate and after having gummy bears and throwing up we remembered he was allergic to the gelatin they're made with. Thank goodness for jelly beans.

We had a nice Easter and had dinner with Ga and Pa. Seamus' new friend, the Easter Bunny brought him some nice stuff, including Easter monkeys. (You'll notice the EB doesn't read ingredients very well since he also brought marshmallow Peeps which were soon confiscated.)



We also had an exciting visit to a pre-school. I'll post more about that later.