First things first. Today, my friends Val and Tara went shopping for me/our family. They bought a few presents with money that anonymous people had donated. They did such a great job of picking out things the kids will love! And there is no way to ever express the gratefulness of people's outpouring of love towards us (most have never met us).
We all wanted to do something extra special for Manny. I'd been thinking about an Ipad for him (many of the merosin kids have it since it's so light and easy to manipulate). And we came up with an idea.
So many people want to do "something" ... to help in some kind of way. I think this is a perfect gift for him even while in the hospital so as he wakes up, I hope to have his ipad all set up and ready to go (I no clue what I'm doing).
If you would like to put a few dollars towards helping Manny get an ipad, you can paypal it to me. Just know that every penny will go towards this great gift for him. (email@example.com). And don't feel like you have to contribute, just giving people a chance to do "something" for him.
Manny did AMAZINGLY well today. He's no where near "himself" but he actually sorta woke up. At one point he was looking at Mickey mouse and he said, "2" ... sure enough, that was the answer.
He's been sleeping most of the day but it's been a restful sleep for the most part. His breathing has been amazing. His chest tube has drained almost 200 ccs fluid in the past 30 hours. (A lot for pediatrics.)
He was doing so well they started taking him off oxygen. I had a feeling he would show the signs of respiratory distress and his 02 would crash as I know he's not ready to be off oxygen. But to my shock, he had respiratory distress but the 02 stayed high. And now we're in a gray area. The new night nurse doesn't know me yet (this all happened at change of shift). But Manny looks horrible. He's starting to act the way he did before his chest tube yesterday.
My theories? His chest tube is out of place or blocked. The nurse doesn't think so.
We aggressively suctioned him (which helped some) but I'm concerned.
The nurse (thankfully) called the doc and we have a plan in place. He's back on oxygen to start with (and that's huge). Earlier in the day he'd been trying to get the canula off ... but when we put it back on, he didn't even object.
After about an hour, he stopped grunting, retracting and looking generally "sick". (He never stopped nasal flaring.) And the strange part ... he was at 100% oxygen basically this whole time.
I didn't really click with this ICU nurse. She's fine and all but I just had this weird feeling. Couldn't place my finger on it though. I started facebook chatting with one friend that's a nurse and one that's had a kid in ICU and septic. Many ideas batted around but nothing felt like just the right solution on how to handle Manny.
I walked out of the room to use the restroom and she asked how he was doing. I explained again how he was still having some respiratory distress, etc. and she said that we'd have his chest xray done by 4am (It was 1am at the time). And I felt comfortable with that. He was declining a bit but nothing that would be a trouble in the next 3 hours.
But then the best thing happened. (God likes to flex His muscles sometimes I think in small ways too.) And she said, we're overstaffed and I'm on overtime so I am the one being cut. I was like THANK YOU LORD. It was the solution that I needed. She's probably an excellent nurse but somehow she wasn't getting it.
In walks Amanda. Oh my what an angel on earth. She's beautiful and kind and sweet and soft spoken. She immediately asked what is going on and I told her and she "got it". (Phew) I knew that she would "stand guard" for him (with the other nurse I wasn't sure so I felt I might have to stay up to watch him).
So after a bath and thorough assessment, we did all we could to make him comfortable. And I crashed. By then it was almost 2am and I hadn't been asleep yet. But I was breathing easier knowing she was there. And he was her only patient. (Another wahoo).
About 4:30 they came in for chest xray and they have to wake me up for that to either put on lead or leave the room. She gave a report about how he'd been doing ... mostly good. And she took care of several problems (Didn't know it was happening, it didn't even wake me up because she was Johnny on the spot!)
About 6am he had a 'blow out' diaper. It's a problem because he has a femoral vein central line (it's in the diaper area) so the whole thing had to be changed out. (Clearly a Mom and a nurse were not consulted on the placement of that line with a kid with c-diff!) So the dressing keeps having to be changed ... often. But while doing that, she told me of more (slight) problems he'd had with breathing and she took care of them.
Thank You, Lord for sending me Amanda last night!
And the coolest part? Last night during all of this, every time he'd be awakened, he was alert and starting to talk. He was actually interacting with her. Answering her questions. He even wanted to hold a toy (first time since Monday for any of this). He was flirting a bit I think! I have so much hope that he'll be more alert today again.
So ... this morning, I wake up at 7:30 to the new day nurse coming in hanging more platelets. They're still concerned about the levels. The chest xray is back but there's no report so the nurse hesitates to share her opinion of it. (I still think it's out of place or blocked or something ... but hoping to be wrong.) Doc will be by in a little bit to discuss next steps.
The things that need to be addressed this morning ... chest tube, breathing issues and his continued need for oxygen.