Egg Shells....

As in constantly walking on them! ARGH! We are frequently reminded that Jaime isn't "normal," today was one of those days. Jaime once again had bowel issues. While "pushing" he started gagging and threw up. He actually does this a few times a week, it's very sad, but today all of the stress actually caused him to desat. I'm not sure how low he got as I was more worried about getting the O2 rather than the pulse ox, but I can tell you he looked HORRIBLE. I love purple, but I have to say, it's NOT a pretty color when it's on your child's face with blotchy areas of yellow. He went down fast, too. I ended up putting him on 1 liter of O2 for a while. He recovered within the hour. He sat and played Legos with Jared, then went down for a nap. Those "episodes" wear him out! I feel so bad for him. I hope that the folks in Cincy are able to help us with Jaime's bowel issues....they truly are affecting his daily life. It's so not fair. The other crazy part is that once I put the O2 on him (I had to fight him a bit to get it on, it's been a while since he's needed it), he never pulled it out. He touched it, but didn't pull at it...not until he was feeling better and completely back to normal. I often wonder if these kiddos just know what helps them and what they need because they're all OK with the tubes/wires. It's part of them! Here are some pics I took (when he had recovered). As stinky as all of this is, we are so incredibly lucky to be able to complain about the nuances of CDH, other families don't have such luck. So, we really are blessed to have him.

Wearing O2, starting to feel better, but not looking all that great.

Jared is so sweet when Jaime's not feeling well, he sits by his side, there to help or play! :) Wires/tubes/tanks....it's all just part of Jared's life, too!

Jaime telling me where his O2 is.

To go from feeling like garbage moments earlier to putting on a smile!
(Actually he was making his "monkey" face)

You can tell by the progression of the pics, as to how well the O2 worked! :) The good news is, by this evening Jaime was back to being himself (and had a few diaper changes, too). He even ate a little dinner and had a piece of ice cream cake before his bath. He was still pretty clingy, but overall, much happier.
Now the only thing left to do is call the O2 company tomorrow to have them send out more tanks. They took our concentrator a few months ago because insurance stopped paying for PRN (as needed) O2. We were left with just a few small tanks in which we pay 100% out-of-pocket for. Well, we've gone through just about all of them, so it's time to order more. We just never know when we're going to need O2, it's simply not safe to have nothing on hand. Plus, with summer and more traveling coming up...tanks are a MUST in this house!
Well, that is all to report! I was going to create a "1st year of life" post with pics recapping last year, but I decided to post this instead! Maybe I'll do a recap later this week! :)
Thanks to everyone for wearing RED today to show support and creating awareness for hemophilia. All of the support we receive is very humbling! Here are pics of Grammy & Poppy wearing red! Thank you! :)


Wishing everyone a great week! This is Jared's spring break, so my work will be a little weird this week, but it will be fun to be home with both boys! I hope the weather is nice...at least one day so that I can take the boys somewhere fun outside! We'll see! Here's to an uneventful week! :)