Sunday, March 25, 2012

This is How it Shakes Down

Thursday, Dean was a little... mellow at school. He did great, but just seemed a little out of it.

Friday, Dean was still a little out of it, finished most of his meals, but didn't eat *quite* as much. This is a little odd. But no other symptoms. Until the night. His belly got HUGE after dinner, which is a big PWS red flag because of the risk of gastric rupture and other acute GI issues (, see Gastric Illness section). We were going to bring him to the hospital, so Bob gave him a quick bath because Dean needed one, and he came out of the bath with a normal-looking tummy. Hmm. He had been constipated that day, so we gave him a suppository and holy poopage, Batman (aren't you glad you're still reading?). So we kept him at home and changed a lot of diapers overnight.

Saturday morning, I'm going out of town for a girls' weekend, and Dean seems a little better. I'm relieved. Except that after I'm done and gone, things go downhill (isn't this always how it is?). Dean gets more lethargic, won't eat, starts laboring to breathe, O2 sats are slipping a bit... basically it just all falls apart as the day goes on. Bob brings Dean to the hospital for what we think might be some combination of dehydration, pneumonia, or who knows what.

They gave Dean fluids, albuterol (which he actually responded to, for once), started him on antibiotics, and gave supplemental O2. I'm getting all this info by phone because I can't get home. If I could explain to you the level of anxiety... ugh. Bob did great. He educated the docs about PWS and was Dean's advocate. Bob said himself that he felt like he really needed this experience to understand what it's like for me to be the main caregiver for PWS issues and to feel the responsibility and worry of that. For this, I am thankful. I mean, if Dean is going to be sick, we might as well have some sort of a learning experience to help redeem it!

Chest x-ray came back clear, which means that it's not "real" pneumonia, but could be an atypical pneumonia like he had last month. Unless none of this is pneumonia and is something else like asthma or... I don't know. Dean's had pneumonia (or something like it) I think 5 times in the last year? Sometimes there are no more symptoms than what I've described, so it's not like we get much of a warning. I knew things were possibly going downhill as soon as he was lethargic, but then when he had periods of feeling better, I shrugged it off as just me worrying.

So now we have questions. For the pulmonologist, for Dr. Miller, trying to figure out why this keeps happening even though Dean's on MULTIPLE medications and probiotics and the rest of it. So thankful that Dean is ok, and thanks to everyone who was praying (if you saw my Facebook updates).

UPDATE: Dr. Miller thinks that it was dehydration that accumulated over the week, plus Dean's adrenal insufficiency that caused him to deteriorate so quickly. Doesn't bode well for being able to spend a lot of time outside this summer. :/


Kimberly B. said...

Calleigh is like that too shes had pneumonia twice this year, she has asthma which is why she gets it so often in the winter time. We see our pulmonologist after her sleep study Wednesday which hopefully will give answers why she sleeps the way she does.Calleigh is on flovent 2 puffs 2x daily and it seems to help plus she has a rescue inhaler.

L. Peters said...

Before my son is about to get sick we notice the same thing. His GI tract seems to almost stop completely. This happens every single time. This is my cue to keep him home from school and resting. I also need to increase his miralax and ex-lax during these times to "clean him out" as an unusually large amount of poop gets stuck in his GI tract. For my son it is like his version of a fever, warning of an oncoming infection.

My son is prone to constipation and we also keep him on a daily dose of miralax.

My son's immune system was very immature during his first 6 years of development. Our pediatrician put him on a low dose of augmentin throughout the winter months just to protect him from infection until his body could get stronger. We stopped it during the summer.

My son is now 10 and we no longer need that prophylactic dose as his immune system has started to mature.

In the summer months we use claritin and flonase for allergy protection.

Good luck and hope this helps!

Ali Foley Shenk said...

Lisa, thank you for sharing that!! That is eerily similar to Dean's experience. I shared about the GI issue with his pulmonologist and he didn't think it was related, but I think it was. I just know that people with PWS have such sensitive digestive systems, and the tiniest thing can throw them off. I think we're going to be even more proactive about all this....