Monday, December 15, 2008

Here we go again....

Why am i slacking so much here?! Arg! Ah, well, i'll (try to) be brief. J

Last Monday night, while sitting at the dinner table, Asher did something he hasn't done in a while. He turned blue. And i mean blue. Almost navy blue around his nose, mouth and chin. He had a blue spell. And it lasted quite a while (almost an hour!). he wasn't distressed or anything: his breathing was fine, he hadn't aspirated anything, his mood was still chipper as ever. But still... navy blue! Yikes! So i took him to emerg.

He was put in a bed, not in a private room as usual (due to his immunodeficiency, they like to keep him separate from the rest of the kids – you have no idea the germs in emerg... no, really, you don't, and you don't want to!), so they could keep an eye on him. But Asher being Asher, he didn't want to just sit on a bed looking pretty, so he decided to wander around. And i mean wander. He took his sweet time and just meandered about. And turned blue. No real exertion, he wasn't running around or being rambunctious. He was honestly just walking. And he turned blue. So, the nurses sat him on his bed, hooked him up for some continuous sat monitoring (mid-80s the whole night, folks!) and got him a TV/DVD so he could watch cars. Even while he was blue, his sats remained perfect in the mid-80s, so the issue is not respiratory. In fact, they did a chest x-ray at one point, and doc said it was the best CXR of his she's ever seen.

Long story short(-ish), we went home. Cardio was consulted, but they said he may just have caught a draft and that caused the blue spell. Don't know how that could be the case in emerg when it happened twice, but ah well, what do i know? Funny story, though (well, heart moms will be amused, and a couple docs will be amused. The rest of you won't care.). cardio asked dr h what Asher's sats were when they were chatting, and she looked over and said, "89." Cardio said, "what?" she repeated "89." His response: "are you sure he's hypoplastic left?" yes, folks, we're sure. Definitely left. And to be honest, i think that 89 was a fluke. Asher must have just wiggled or something, because i don't remember an accurate reading of 89 in a very long time. Either way, still a funny story, no? J

And moving on....

I mentioned last week about Asher's tube site being infected, and doc putting him on keflex (an antibiotic). I had my doubts about it, but she said that if it didn't do the trick i was to bring him back in and she would prescribe something else.

Well, guess what.

It didn't work.

After a week of treatment, it wasn't any better.

In fact, it was worse. Much worse.

Of course, this was discovered after doc's office hours on a Friday. It simply could not wait till Tuesday, however. It was that bad. Very red, very oozy, very very, very gross.

And through all this, Asher's blue spells have continued. 2 or 3 a day, at least. And by Friday, he was getting short of breath throughout the day, as well. So, when i took Asher to emerg on Friday night, all this was mentioned.

So, here's the deal: emerg doc (hi, dr k!) put Asher on cipro (another antibiotic, and the one i wanted for him in the first place). She also suspects (as do i, by the way) that the blue spells and shortness of breath are linked to the infection. So, we were sent home again, and in record time this time! Our whole visit, including quite a wait for triage, was a little over 2 hours! Sign me up for visits like that anytime! J

So, there you go. Asher's health stuff up to now. Sometime in the next while, i will be posting some marvellous pics of Asher that were taken on Sunday. They're absolutely beautiful! Clint from Renaissance Studios is such an amazing photographer. I promise you'll be blown away. Those of you on my facebook may have already seen them. Breathtaking, truly. J

Oh yeah, and we had our first day with a shift nurse who was here for 4 hours today. This is the new plan that we came up with last week in my meeting with nursing and CCAC. Actual shift nurses on Mondays, Thursdays and Fridays, and then an RN visit on Sundays. I think it's going to be good. I'd been getting a little overwhelmed lately, and was having a hard time balancing all of Asher's care with being his mother, being the other kids' mother, keeping the house in order, and just everything life-related in general. So this is going to help, i think.

Also, i'm going to mention this quickly: Asher's buddy Yale (HLHS) finally got a new heart last Wednesday and he's doing marvellously! I'm going to be going up to Toronto this week to visit them, but so far, he's pink, he was successfully extubated within 3 days of surgery, and he's doing very, very well. And while we celebrate with Yale and his family, we need to remember the donor family as they grieve their loss. Pray for peace for them as they mourn, knowing that their loss means new life for Yale.

Ok, that's it for now. Blue spells, bad infection, shift nursing, amazing pics, and a new heart for Yale. Quite a ride over the last week or so! J have a great day, and i'll try to post more frequently now. J

1 comment:

dahlr said...

The Oley Foundation offers information and support to patients and their families on tube and IV feeding. Check out our many helpful FREE programs at or call (800) 776-OLEY. We can also connect you with other families in a similar situation.

In particular, I'd love to share a skin care chart for tube feeders. Unfortunately, I don't have it in electronic form. Send me your street address and I can pass it along.

Roslyn Dahl
Oley Foundation Staff
(800) 776-OLEY