Monday, September 28, 2009

Happy Birthday #4

My Darling Seamus,

Today you turn four, such a big boy! Sometimes I think the time has flown by but when I think back to all you have gone through, I can hardly believe it has fit into four little years.

This year has been another eventful one. You have learned so much and have matured in so many ways. Everyday you show us, beyond our wildest imaginations, how brave and strong you are. On days that I do not feel very brave or very strong, you are my inspiration to keep fighting even when it seems impossible.

This year you have made leaps in your education. You have mastered letters and numbers and are taking the first steps in reading. Your imagination and curiosity are immense and everyday you pick a new "word of the day" about something you're interested in.

You continue to be the most empathetic child I've ever known. Whether it's comforting Ga or stoppping to help the kids at soccer class who have fallen, you are always thinking about how others feel.

This is one of our favorite verses from one of our favorite books:

"If you'd never been born, well what would you be?
You might be a fish! Or a toad in a tree!
You might be a door knob! Or three baked potatoes!
You might be a bag full of hard green tomatoes!
Or worse than all that... why, you might be a
WASN'T!
A Wasn't has no fun at all. No, he doesn't.
A Wasn't just isn't. He just isn't present.
But you... you ARE YOU! And now, isn't that pleasant!"
-- Dr. Seuss, from Happy Birthday To You!

I love you, my little porcupine and I am so glad you are you. You will always be my bestest boy.
Love-
Mommy

Friday, September 25, 2009

Goodbye My Friend

We lost a very close friend this week. Our cat, Izzy, had to be put to sleep on Tuesday because he had "thrown a clot" which means somehow a blood clot found it's way to his hind end and we found him paralyzed on the basement floor. By the time James got him to the vet, his heart was giving out and his lungs were full of fluid.

Izzy was fifteen and had numerous health problems so the vet was always amazed at each visit at how well he was doing. He was my original baby. We were together long before I met James or ever thought about Seamus and when I decided to move to DC all alone fourteen years ago, he was the one who kept me company on lonely Friday nights. I also had another cat, Alice, but I adopted her as an adult and she never really needed me the way Izzy did. Izzy was cool because he was very loving but not overly needy. He was huge, 32 pounds pre-diabetes, and was much more dog-like, than cat-like.

He was so sweet with Seamus. I think they saw each other as kindred spirits, both took lots of medicine and went to the doctor's often. After this last hospitalization, Seamus was lying on the couch one day getting his dreaded hydrocortisone suppository and was screaming and sobbing. Izzy ran right over and tried to jump up in between us . After we pushed him away, he ran to the end table near Seamus' head and jumped up again. Now Izzy was huge and old so he did not jump often, but nothing was keeping him from his pal Seamus. We pushed him away again and then he jumped onto the back of the couch, which I have never seen him do. He reached his paws down to touch Seamus to let him know he would protect him. And it calmed Seamus right down.

Tuesday night, we told Seamus that Izzy was in heaven now with his grandpa and was keeping him company. He said "That's a good idea." We went on to say that Izzy wasn't sick anymore and didn't need any more shots or medicine. Seamus looked really happy and I knew he was thinking about his own treatments and medicine. Then he said "Do they have little kid stuff in heaven?" I had to choke back the tears when James said "Yes, they do" and all I could think of was "Yes, but I wish they didn't need to."

Good bye, Izzy, my love. We will all miss you terribly.

Wednesday, September 16, 2009

Thanks

I want to thank everyone for the kind and encouraging comments. I have not been very good at keeping up with other blogs but I know everyone has their own issues that they're dealing with so I really appreciate people taking time out to think about us.

Seamus is doing great. He has a little cold but that's not holding him back. I knew he really was feeling better when he told me last night that going potty "didn't feel hard like wood any more. It feels soft like a pillow."

We're starting to plan his birthday party in a couple weeks. It's going to be all things Spiderman! We're going to have two bouncy houses in our backyard but I have to think of other Spidey related things. If anyone has any clever ideas, please let me know.

And, oh yeah, he's gained two pounds!

Sunday, September 13, 2009

More Vacation pix and video

Seamus goes back to CF clinic tomorrow to get his PICC line taken out. This morning he woke up with a runny nose, all sneezy and a low grade fever. I think he probably caught a cold after just two days of school. We'll see what they say.

His other issues seem better. He's able to poop without straining and says it doesn't hurt. That is a huge improvement.

This week was busy. He started school, 3 days a week, and soccer classes. I think it took a lot out of him but he loves it.

Here's more pictures from our vacation and a cute video.










video

Tuesday, September 8, 2009

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.





Thursday, September 3, 2009

Latest

I am just worn down and haven't been able to post. Facebook is different because that's short little updates but when I sit down to write a blog post, I just feel overwhelmed.

The last time I wrote, Seamus had gone back to the hospital for the 2nd time in a month and sent home again with a "It's just a virus" diagnosis. We were able to go on vacation but by the third day, Seamus started again with the uncontrollable diarrhea and terrible cramping. It was bad, all over the hotel room, in the hotel pool area (we just barely got him out of the pool in time.), ... When we got back home, he started in with the fevers again and then the constipation.

We took him into his GI doctor to get bloodwork done again and again were told, "It's probably only a virus". Who gets a virus that keeps coming back every 2 weeks with the same exact symptoms? On the way home from Baltimore, we got into a car accident. It wasn't too bad but my neck and back were stiff and very sore so they took me away strapped to a flatboard to the hospital. Seamus really was upset by this. So not only was he feeling really sick, he was emotionally a wreck. We finally made it home late that night.

Saturday, he was no better and by the nighttime he was complaining of severe pain in his stomach, especially when pushing to poop, and vomiting. After waking up at 1:00 AM in inconsolable pain, we decided we couldn't wait for the bloodwork to come back again so we headed back to the ER.

I'm glad we did because they took one look at the x-ray and said he has pneumonia. But the part that really pissed me off is they looked back at the x-ray from our ER visit two weeks ago and said "Oh, that shows pneumonia too. Sorry, we must have overlooked it." What!!! I understand pneumonia can present differently and isn't always clear cut but in a kid with CF, wouldn't you just err on the side of caution and assume it is, especially with fevers of 103 plus???

He also had some more poop that appeared stuck so they wanted another clean out. Since he was admitted under the Pulmonary service because of the pneumonia, they called the shots. Normally he is under the GI service. Well, they have different ideas of what a clean out is. Pulm decided he needed to be NPO, instead of on a clear diet, and ran the Go-Lytely at ridiculously high speeds which caused Seamus a lot of pain, even vomiting. GI says clear is when there are no more particles. Pulm says clear is when it looks like water. By Tuesday, he was still on it, even though GI thought he was done and could eat. The poor kid hadn't eaten or even had water since Saturday dinner.

Not only that, I walked into the room after going to work on Tuesday, and saw his left arm swollen about three sizes bigger than normal. His IV had infiltrated and they hadn't noticed. It was bad, the nurse kept running around telling everyone "It's massive! It's massive!" The "antidote" to this is to give 5 shots in his hand at the exact same time which is supposed to soak up the fluid. Seamus is traumitized by any needles since he's been pricked so much for IVs and bloodwork and seeing 5 nurses all coming at him with needles in their hand was too much for him to handle.

Between the pneumonia being overlooked for 2 weeks, the two teams not working together and the IV incident, I totally lost it. Seamus has been through enough and all of these things were all preventable. I know I'm his advocate and need to keep on top of everything because he can't, but it is so tiring.

Since most of his symptoms were more GI related than pneumonia, they think there is some other kind of infection going on, so yesterday when they put in the PICC line so we can take him home on IV antibiotics, they also did a bronchoscopy, endoscopy, and colonoscopy. The last one was at our request, it hadn't occurred to them. Thank god they did it because that procedure revealed the most information.

Seamus has rectal ulcers, and inflammation (almost to the point of being totally closed off) of the TI area where the small and large intestines come together. It's interesting because that's where he gets his blockages every time, which now makes sense. He may also have peptic ulcers and IBD. I feel so bad for him and all the times we forced him to sit on the potty and push.

Today they are going to do a CT scan of his abdomen and pelvic area to see if there are any abcesses that they might have missed in the scopes.

But again, Pulm came last night to talk to us and they knew nothing about the rectal ulcers and the TI issue and were just going to start him on treatment for peptic ulcers that GI never mentioned to us. So that' s very concerning that they dont' seem to be on the same page.

I have no idea how long we'll be in here. Nobody has even started talking about discharge. Seamus is in good spirits, better than the rest of us.

So there you are, caught up. I'll try to update more often.