Catching up

It's been a busy Fall and Winter at our house. The big news is I'm pregnant! We are expecting another son in March and we're all excited. I think Seamus was more excited earlier and just wishes it would be over already. When I ask him to come feel the baby kick, he rolls his eyes and says "Mommy, I don't need to feel the baby again." Mommy also wishes it would be over soon. This is hard work for a "mature" lady like me.

Seamus was sick the entire month of November. He started the month with an endoscopy because an x-ray showed a piece of his old g-j tube stuck in his stomach. They went in to remove it but then couldn't find it. However, the breathing tube used for anesthesia seemed to stir up gunk in his lungs because two days later he ended up in the ER with pneumonia. He stayed for a week and then went home on IV antibiotics for another two weeks. After that, he still wasn't better and has been on oral antibiotics hoping to finally kick his cough that he's had since July. He finishes on Christmas Day and hopefully he can get a Christmas miracle and have it be gone for good.

He's been enjoying school a lot this year. He's a big Kindergartner and is really learning a lot. He told me today he can't wait for Christmas break to be over so he can go back to school. We're having a very difficult time trying to find a school for him next year. His current school is just Pre-K and K. Our local elementary school has class sizes of 30-35 which would definitely not work for him because of all the germs.

He's still taking dance class, tap and ballet, and even though he's not the most coordinated, he still loves it. And of course, he still spends hours each day drawing and cutting his "paper dudes". I think art is going to be his thing.

Seamus is very excited about Christmas but I think he's catching on about Santa. He keeps talking about how the Santa he saw this year didn't look like the one from previous years. He's too smart for his own good. Yesterday, he ran around the house and collected all the tissue boxes and drew family portraits on all of them. Then he wrapped them up for Christmas presents and said "Now when they blow their nose, they can look at pictures of their family." He's very thoughtful.

The clean out took longer than we expected. He wasn't clear until Saturday after about 24 liters of Golytely. He had a lot of malabsorption that was stuck. We go back to CF clinic tomorrow and have to discuss switching enzymes. He takes 9 Pancrecarb MS4s with meals which is already the highest dose he can take so I don't know what else they can do. He also seems to have caught something while he was in there because he's been coughing and pretty junky sounding.

Seamus has a new hobby, cutting with scissors. Santa brought him a pair of kiddie scissors and they're his favorite present, by far. Seriously, from morning until night, he cuts, cuts, cuts paper "dudes", pictures out of magazines, or anything he can find. He's surprisingly really, really good at it and we spent hours in the hospital drawing and cutting all the Disney and Nick Jr characters.

A funny hospital story: I had to leave the room for a minute so I showed him how to use the call button and told him to call the nurse if he needed her. Apparently, as soon as I left the room, he pressed it and said over the intercom for everyone to hear "Hello, my name is Seamus and I would like some crayons please."

Some of the worst words a parent could ever hear (besides "I'm sorry, your baby has Cystic Fibrosis) are from your child begging you to make the pain stop and being completely helpless.

"Please Mommy, make them stop. I said please." It breaks my heart every time we are in the hospital and Seamus pleads with us to stop the doctors/nurses from doing some very painful and scary procedure. We are supposed to protect him and I feel like we are letting him down. I put on a good face and act strong so he won't be as scared but I feel like a piece of his innocence is taken away each time.

Finally after screwing around with home treatments that weren't making any progress, he finally got admitted last night. He is doing okay but is still not clear after 24 hours straight on Golytely.

I was feeling pretty low today and then I thought about all the great things we've been able to do that we wouldn't have if Seamus hadn't been in the hospital 19 times. We've spent hours and hours playing with play dough, drawing pictures, telling silly stories, and laughing. We do these things at home too but while we're here, there are less distractions and more time to just concentrate on each other. Obviously, it's not all fun and games (see paragraph two) but it's not all bad either.

I hope that's what Seamus can remember too when he thinks back on his childhood hospital stays.

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.

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.

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.

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:

Seamus' List

Christy at Color Me Healthy had a good idea. Because the CF blogging community has gotten so big, it's hard to keep track of who is dealing with what issues and what treatments everyone is on. She posted a list of a few things about herself to get people caught up. So here is Seamus' list.

1. He was born on September 28, 2005 with Meconium Ileus and spent 10 days in the NICU.

2. Because of amniocentesis, we knew before he was born that he had CF with mutations DeltaF508 and R542X.

4. He has been hospitalized 16 times with GI problems, mostly Distal Intestinal Obstruction Syndrome.

5. At 18 months, he had a pyloroplasty to widen the opening between his stomach and intestines and a g-j tube was placed in hopes of stopping his excessive vomiting and weight loss.

6. A year later, he was still vomiting almost everyday. Another endoscopy was done and he was found to have eosiniphilic esophagitis.

7. He is allergic to milk, soy, beef, and pork.

8. His daily meds are: Digestive - Miralax 1 capful thru g-tube/3x day; Mucomist, 2 mls/2xday, Vitamax 1 ml/2xday, Vitamin D3 15 ml/1 day, Prevacid 30 mg/2x day; Primadophilus Reuteri (probiotic) 1 tsp/1xday; Flovent 110mcg 2 puffs without spacer/2x day; Pancrecarb MS-4 9 with meals and before and after tube feeds. Respiratory - Flovent 44mcg 2 puffs with spacer/2x day; Pulmozyme 2.5 ml neb/1xday; Chest Percussion Therapy via InCourage vest, 30 minutes/2x day.

9. They switched his g-j tube to a g-tube 6 months ago. He gets 8 hour feeds each night and is still struggling with weight gain.

10. Seamus loves being around other kids, probably because he is an only child.

11. He loves pre-school, the Wii, Spiderman and SpongeBob.

12. He is an amazing kid and is always concerned about others. Everyday, he inspires me to be a better person.

13. His favorite joke: "Guess what?" "Chicken Butt!"

We're home

Seamus was finally admitted at 2:00PM yesterday after being in the ER for 18 hours. By 7:00 PM, after being on Go-lytely for 21 hours, he was pronounced clean and was discharged.

He's thrilled to be home.

I'm writing from the ER where Seamus is in the midst of a clean out. They want to admit him but the only room available was a shared room so we all decided it was better to stay in the ER for now where we have a private "room." Hopefully, tomorrow they'll find us a single room on the floor.

I'm not a doctor but I've sure seen enough x-rays to know he's pretty blocked up. They clean him out with Go-lytely which is what we do at home, but here they can give him huge doses and monitor his blood levels. Sometimes it takes days and days of the stuff. This is the first time he's really cried and complained of pain so we know it must be really bad. Usually when we are here he's happy and laughing so no one can believe how bad off he is, until they see the x-rays, but this time they really believed it just looking at his face. Instead of asking the kids how they feel on a scale of 1 to 10, they use a pain scale with little faces on it and ask the kids to pick the face that looks like how they are feeling. Seamus went right for the "10" face with a frown and tears streaming down. It made me cry because I had no idea he was in that much pain.

Please keep Seamus in your thoughts and prayers tonight.

Quick Update

Seamus is getting x-rays today. I'll keep you posted if he ends up being admitted.

I don't know what it is about December but if he goes back in, this will be the 4th year in a row that he's been in the hospital right before Christmas. I'd hate for this be our family tradition.

Good news and Bad news

Do you want the good news or the bad news first?

Well, the bad news is last night about 11:15, I tried to change Seamus' diaper while he slept. His feeding tube got caught on his pants and pulled right out. Well, not completely, and James (not me, I can't stand to do it) was able to push it back in. But we had to go to the ER to replace it because it wasn't going to stay in.

We made it to the ER about 12:15 and after a little wait, we got right in and the docs saw us. Seamus was actually happy to be there. He loves the stickers and all the attention. Since we are no longer using the j-tube portion of the gj-tube that goes into his intestines, they were able to replace it right there with a g-tube that only has a 2 cm tube going into the stomach. That's the good news, if you couldn't tell. That means we didn't have to call repeatedly to set up an appointment so Seamus could come back and go under anthesia to have the Internal Radiologists place a tube in his jejunem. That's great progress.

By 2:00 AM we were ready to leave but Seamus wanted no part in it. He cried because he wanted to stay there. He got over it as soon as we got in the car and I thought he'd fall instantly asleep but he sang the whole way home and was up this morning at the regular time, no worse for wear.

Home again

So we ended up going back to the ER on Sunday and finally got admitted. After much confusion and disagreement between many docs over what his x-ray showed, he was treated and discharged this morning. The plan is to do nothing. I don't know why they would think it won't happen again if we don't change something in his regimen, but we can only argue so much.

Seamus was his usual charming self (in between stomach pains) and all the new doctors and nurses fell in love with him. It's really nice that so many of the nurses who he's had in the past come to visit even though he's not their patient. Everybody remembers Famous Seamus.

We are planning on taking a trip to Chicago this weekend and I hope everything goes alright. I hear they have some good hospitals there, but I really don't want to find out first hand.

Here We Go Again

We were not paying attention to the calendar or we would have been better prepared. We've been told (by doctors at the hospital no less) that do not ever go to the hospital in July unless absolutely necessary. Not only are the brand new doctors starting, there is also a big turn over of higher up docs who may know medicine, but are not necessarily familiar with the workings and politics of a hospital. This is true all over, not just at Hopkins. Last year, we ran into the same exact problems.

Unfortunately, even if we had read the calendar, we had no choice. After the vomiting got progressively worse and the very intensive home treatment failed, we had to go in to the ER on Tuesday. To make a very long story short, after seeing a new intern who was afraid to make waves and being diagnosed over the phone by a new fellow who knew nothing of Seamus' long history with DIOS and couldn't even be bothered to actually see him, we were sent home at 1:00 AM. Well no shock, the next day he continued to vomit so a gastrograffin enema was scheduled for yesterday. That's a heavy duty treatment in radiology which is supposed to break up anything. Supposed to being the key word.

Well, here we are the next day and three vomits later. He hasn't thrown up since this morning but that's because he refuses to eat anything. He's barely eaten anything since over a week ago and it really shows. Not only is he skin and bones, he has no energy. We just tried to take a walk and James had to carry him after about 15 steps.

I'm trying to think of something good so this post isn't all negative but I really can't. Even our "venture" to the zoo after the gastrograffin ended in a messy disaster. We know we're going to have to go back but the only thing worse than going to the ER in July is going to the ER in July on a weekend.

Things we've been up to:

- Sitting in the ER all day last Wednesday and not being admitted.

- Spending a lot of time indoors away from Code Red days with 100 degree temperatures.

- Playing in the Elmo sprinkler in the mornings before Code Red sets in.

- Missing a trip to Sesame Street Place due to double ear infection and aforementioned Code Red days.

- Dancing to Laurie Berkner and Raffi videos.

- Sitting on the front porch watching thunder storms.

- Trying out every "big boy bed" in Ikea. "I love this one, it's great for me!"

- Learning to walk on our hands

- Mastering all the puzzles in the house. Seamus really is amazing at figuring them out.

- Reading lots of Dr. Seuss books

- Watching the construction guys build our addition. Seamus has grown quite attached and told me he missed the guys tonight.

Motherhood

5minutesforMom is having a photo contest for Mother's Day, What Does Motherhood Mean To You". I think this photo says it all. It was taken last year in the hospital when Seamus was at his sickest. I love that the camera caught us sharing such a tender moment.

Back to the ER

Well DIOS (Distal Intestinal Obstruction Syndrome) reared its ugly head again last week. We could tell that Seamus was slowly getting back to his old GI patterns and on Tuesday after complaining for days about wanting to throw up, he actually did. We knew he was ready for a clean out.

He didn't get admitted to the hospital, although it probably would have been better if he had. They sent us home from the ER to do a clean out which didn't work. Wednesday he was worse than ever, vomiting multiple times. We went back to the CF clinic on Friday and they wanted us to make one more attempt at home but said they would admit him if it still didn't work. We're still on the fence whether it completely worked or not.

Some good things that have come out of this experience last week:

The Coleman family got to spend a lot of time together. We spent time lounging in bed and reading lots of stories (albeit with frequent linen changes)

Seamus got to see all his friends at the hospital and got stickers!

Seamus got his very own red sparkly vomit bag. It was the only thing we had handy in the car on the way to the hospital. He's still walking around with it.