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.