Friday, May 29, 2009

Mommy laid up

Yesterday, we were all ready to go get Seamus' x-ray when I bent down and my back completely went out and there was no way I was getting up. It was quite a logistical nightmare because we were still waiting to hear from the GI doc who was supposed to send an order to the X-ray place and then after the x-ray, we were supposed to go the pediatrician to review the film. So my not being able to move really put a wrench in the plans. To make a long story short, somehow I got to the doc with my mom basically carrying me while James and Seamus did his stuff.

The good news is the x-ray was clear so Seamus' treatment seemed successful, but the bad news is I'll be in bed the next few days on major drugs. It supposed to rain for the next few days so at least I won't be missing out on good pool days. But I'm not a good patient, I keep thinking, "Oh, my back feels better" so I get up but after about 10 minutes, I realize it's a bad idea. Seamus is being a good helper filling my water glass and bringing books and games in here to play so I won't be lonely.

Wednesday, May 27, 2009

Clean out

Please think poopy thoughts for Seamus. He's in the midst of another home clean-out. He had one a month ago which obviously didn't fully do the trick because he's right back to where we started.

This time we insisted on having an x-ray done after the treatment so we could prove to them that one and a half liters of Go-lytely at home isn't nearly enough. We're getting one tomorrow.

Monday, May 25, 2009

Pool Plan

First, I want to thank Natalia for her very honest and helpful comments on my last post. It confirmed a lot of what I already thought and made me feel better about being so obsessive. I think sometimes the doctors are afraid be brutally honest with the new CF families because they think we'll freak out. It's a fine line between letting him be a "normal" kid and keeping him safe and sometimes it's hard to do both.

We've come up with a plan for the pool. We found out the girl is 11 and has active MRSA so we are going to try to go to the pool in the morning during Toddler swim when she won't be there. If we are there when she is there, Seamus will go with James to the changing/bathroom area and won't go into the ladies room. Since he spends most of his time in the wading pool (he calls it the Navy pool) or the little kids' playground, he shouldn't be exposed to her.

Other than hanging out at the pool, we didn't do much else this weekend. Seamus hasn't been feeling very good and hasn't been up to his normal crazy antics so it's been pretty calm around here.

Saturday, May 23, 2009

Sensitive question

We joined a pool today and spent all afternoon there. It's a great place, very laid back, not "pool club" like at all. More like just a big party in someone's back yard with music, grills, and pools.

I was wearing my Great Strides t-shirt and when I walked in, a girl about 10 saw it and said "I like your shirt." I said "Thanks, my son has CF" and she said "Me, too." I was a little surprised and I didn't really know how to respond. This has happened to me on a couple of occasions when Seamus has been with me and my first reaction is to want to grab him and pull him away from them, but of course I don't.

And what do you say to that? "Oh, I'm sorry to hear that" or "Wow, what a coincidence?" What I really want to say is "What did your last culture grow?" I'm mainly just worried about cepacia but how do you find that out without sounding rude? And she probably wants to know what Seamus is growing too but I can't just blurt it out. Seamus is going to run into this girl all summer and it's always going to be on my mind.

Thursday, May 21, 2009

Seamus' Littlest Heroes Photo Shoot

Okay, I know I'm biased, but are you kidding me with this cuteness?

The last four nights Seamus has ended up in our bed. The first night he just spent a few minutes but it has escalated into last night's sleeping all night there after waking up screaming in pain. He was unconsolable for about 10 minutes until he just passed out from exhaustion. This morning he woke up and seems fine but this is usually the first sign of a bigger GI problem. We'll see what happens.

On another note, I held off from Facebook as long as I could but I signed up yesterday and I'm already hooked. If I don't update this blog much, you'll know that's where I am.

Seamus' new joke:
Why did the chicken cross the playground?
To get to the other slide!

Monday, May 18, 2009

Great Strides and Faeries

Our Great Strides Walk was great! Team Go Seamus Go! had about 30 people walk and made $3400. The weather started out a little shaky but actually ended up being a nice day. Thanks again to everyone who donated and/or walked with us.

The only issue I had was it was at a park with a big playground and all the kids were playing together. They had stickers for the kids with CF to wear so we could keep them apart but Seamus was about the only one wearing one. I mentioned being worried to another CF mom and she acted like I was totally overreacting. Do they take precautions at other GS walks and was I being too concerned?

Here are some pix from the day:

Yesterday, we spent the day at the Maryland Faerie Festival. Very interesting, sort of like a mini Renaissance Fair. Seamus had a blast and really enjoyed talking with all the different people. And I do mean different. My first reaction when seeing some of them was, truthfully, not the most open minded but Seamus is so open to everyone, it really made me stop and think. They're not hurting anybody, so what if they're grown men and women dressed like elves and fairies.

Monday, May 11, 2009

Mothers Day and Littlest Heroes

I had a great Mother's Day yesterday. We met with Mary Kate McKenna, a fantastic photographer who did Seamus' Littlest Heroes photo shoot. If anyone needs a photographer in the DC/Frederick MD area, I highly recommend her. Here are just some of the great pix she took. Seamus absolutely loved it and was vogueing it up. I think I saw a few "Blue Steel" moments.

Tonight, we had our fundraiser at Franklin's. It went well, we'll find out tomorrow how much we've raised. It stinks that his nursery school is doing a fundraiser at the same restaurant tomorrow so lots of his classmates didn't come tonight but I think it was successful anyway.

Friday, May 8, 2009

Clinic visit

Woo Hoo! Clinic went great this morning. Seamus has gained a pound and grown an inch! So now he's at 41st percntile for height and 66th for weight which is an overall BMI of 78. Can't ask for better than that. His lungs sound good and hopefully his culture will come back clean since he's been on Omniceff for the last week because he was having increased cough.

We talked a little about his GI problems these last couple of weeks but the CF doctors really don't have much to say about that. Seamus' GI issues are so extreme that they haven't dealt with anyone like him so they leave it up to the GI folks. But today he seems to be pain free and is pooping so we're not complaining.

A funny story:
Seamus is a big fan of classic rock music. Often while riding in the car, he asks me to stop the radio on a station that plays lots of AC/DC, Cars, Eagles, etc and we usually rock out to a few songs. This morning we sang along with Paul McCartney and Wings. A while later, Seamus told me his favoite song was "Bad Dollar Rug". It took me awhile but then I realized that's a much better title than "Band on the Run."

Tuesday, May 5, 2009


Seamus seems to be doing okay. He hasn't had any more weird problems with his g-tube. I think removing his old one and reinserting a new one helped because it's now in the correct position, that is actually in his stomach. But something is still not right. It's not one thing, but just overall, I have a feeling something is wrong.

He's vomited only once since Sunday and he isn't complaining of pain but he's just not himself. He seems tired and doesn't want to leave the house. He actually cried and begged not to go to soccer class yesterday, which is not like him at all. Pooping still hurts, he's back to being constipated and he has hardly eaten anything in days.

I just hate this. There's not much the doctor can do just looking at him and his symptoms aren't bad enough to go to the ER, yet. They say if he's in pain to take him in but Seamus is so used to pain, he just never complains. So we wait...

Saturday, May 2, 2009

G-tube question

Something strange happened today. Seamus complained a few times about his stoma, the site of his g-tube, hurting. It was a little red so we put cream on it. When it was time for his Miralax treatment this afternoon, I removed the cap on his button to plug him in and he said that hurt. When you open it, the pressure is usually released which should make it feel better, not worse. His pump is run really fast for his Miralax, 500 ml/hr, but he doesn't usually have a problem with it. Today, he didn't tolerate it very well and we noticed his stomach looked odd. Right above his belly button, an area seemed to poof out, like a two inch vertical ridge. After his treatment was over, the ridge went away and he said it didn't hurt any more. I'm wondering if it could be a hernia? He also has a scar from stomach surgery in the same area so maybe his intestines there are weak. He has so much pressure on his intestines all the time, between the DIOS and all the medicine we pump in him at fast speeds.

Has anyone with g-tube experience ever seen something like this? He gets another Miralax treatment tonight at 500 ml/hr and then his feedings all night at 65 ml/hr. I'm afraid to push it until I can talk to the docs but he really can't miss a dose.

Update: I spoke with Dr C, Seamus' GI doc, and he thinks it might be that his stomach has separated from his abdominal wall, which is not a good thing. This can happen right after a g-tube is placed, but not usually 2 years after, like Seamus. He thinks his tube was pushing the fluid into this separated area outside his stomach cavity which was causing the bulge. We replaced the tube (or I should say James did because I can't stomach it (no pun intended)). If it happens again tonight, we'll need to stop his feeds and take him into the ER tomorrow.