Samantha had a good week with the exception of some GI issues. She may have some sort of GI bug in her little body. It started with some vomiting and a low fever a few days ago. And now the vomiting is less, but now the other end is having a bit of extra traffic (sorry for TMI!). Ironically, she had some stellar blood work drawn yesterday. Her BUN, sodium and bicarb were all in normal range, and her lactate was 1.8 (also normal, Samantha's is usually high). Perhaps vomiting suits her? We had the nurses send some stool to get cultured last night just to see what comes back. Through it all, Sam's personality is in tact and she continues to laugh and play. The kid is a champ.
The cardio team came by this week and diagnosed Samantha with Wolf Parkinson White Syndrome. Due to this new diagnosis, they switched her calcium channel blocker to a beta blocker, as the calcium channel blocker is not something you should be taking if you have WPW. Now, she is on propranolol for her autonomic issues. We aren't 100% sure she still needs something like propranolol as her autonomic issues may have been related to her respiratory crisis two months ago. However, at this time we would rather play it safe and so far it seems to have lowered her sometimes high heart rate a bit. For right now there is nothing to do for her WPW as she does not have any symptoms. It is just something to keep an eye on and if any symptoms arise we will deal with it then.
Our 24 hour stay is scheduled to begin this afternoon. That means for 24 hours Val and I will take over ALL of Samantha's care here, to include a trach change and vent circuit change. As we are here all of the time anyway, we are assuming all will go well. As I mentioned earlier, Sam is still dealing with the GI issues, so that has me a little concerned. If we were home and all of this was going on we may have taken her in to a doctor or the ER--but we are already here. Apparently if we have questions for the doctors during the 24 hour stay, that is ok. But if we need intervention (such as an IV), we would cancel the 24 hour stay and try again at a later time. Postponing the stay by a day or two is not too big of a worry for me. My bigger concern is our discharge this coming Thursday. I really don't want to delay that if we can avoid it. Hopefully all will go well and we will be home soon as anticipated.
Last night Samantha got a very special treat here in the hospital. Val and I took our trach CPR class on Wednesday morning, which means we are now finally able to take her off of the floor by ourselves. We were in the hall going towards the elevators last night when one of the nurses walks up to us with a big smile on her face. She told Sammy she had a big surprise for her and directed us to the play room. In comes three lovely musicians who serenaded Samantha with Bruno Mars, "Just the way you are". While all of the lyrics didn't quite fit for a toddler, the refrain had Val and I almost in tears.
When I see your face
There's not a thing that I would change
'Cause you're amazing
Just the way you are
And when you smile
The whole world stops and stares for awhile
'Cause girl, you're amazing
Just the way you are
The playroom has glass windows surrounding it, and while Sam was watching her personal concert, all of the nurses on the floor were standing outside with smiles on their faces. It was an incredible moment. And, Samantha loved every second of it. She enjoys music so much, we were thrilled she got to experience something like that.
Until next time,
Monica
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