Hi all! Well, after a few days of Lindsay not feeling well, she has had a great day today. Minus a few throw-ups, she is smiling and almost looks like her normal self again. She did scare us for a little bit which made Jr and I to make a decision on heading back to Ann Arbor. She had some labored breathing and her lung was still a little wet so she was getting some extra diuretics. When we arrived on Monday night, she did look very worn down. Definitely not herself. She looked almost too dry to us and her breathing seemed to be ok. All blood work has come back negative so they think that she had a small viral bug that she has seemed to truck through once again. Now, on to the feeds....they started her on continuous to see if she improves with her gagging. This hasn't really improved so tomorrow they will be removing the NG and we will be doing things orally for a little bit. Her gag reflex is just so strong that hopefully it is just as simple as her feeling that tube in the back of her throat and that triggers the gagging. We have asked about a stronger reflux med but there really isn't. So, hopefully she will keep her feeds down tomorrow and continue to get stronger. Also, she was scheduled for more of the Rituximab this week but her count is still low enough that we can wait another week or so until they check her again. This is great but does not necessarily mean that this has lowered her antibody levels. I'm sure it has a little but the transplant team is pretty confident that she will need a few more doses. They have discussed a few more medicines to try but we aren't quite to that point yet.
I worked at Cole's school on Monday. He was so excited about that and especially excited that he was able to hand out the snack. Weeeeelll, Mom forgot the snack! It was my first time working and never occurred to me that that was one of the responsibilities of a working parent. OOPS! Sorry kids. I especially felt so bad for Cole but all of the kids just went and played like it wasn't a big deal. I will make it up with a supped up snack next time! Either way, I know Cole was so happy to have me there. It was a special day.
Our new friends, and fellow heart family, The Hagerott's. Their son, Zachary, will have his surgery tomorrow. Please pray that Dr. Bove is on his A-game as always and that Zachary tolerates all that has to be done to him. These cardiac kids never seize to amaze us with their strength and we are confident that Zachary is one of them. They will have updates on their carepage, I'm sure, as the day progresses tomorrow. If not, look for it in the evening. We will peek in on them as well.
All for now. I will post new pics a little later.
Wednesday, December 10, 2008
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Hi Suzie!!! Glad to hear Lindsay is doing better. I was just wondering if you got the bracelets yet? Let me know when you get a chance.
Hope she is able to tolerate the feedings alittle better once the tube is removed. Keeping you all in my prayers!
So glad she is hanging in there. She's a tough one, as usual. I can't believe how big she's getting--almost 6 months old--WOW!!
We're praying for you guys and little Zachary. Take care.
It was so nice to sign in this morning and read that Lindsay is doing well. She sure is a trooper! As for the mess up with snack, welcome to the Mother's Club!!! If with everything that is going on in your life, that is the only thing you forget, you're doing pretty well! I forget stuff on a daily basis and I am just dealing with the daily grind. You are a FABULOUS mom and don't you forget it!!!!!!
Also, Ben wanted to send letters to Lindsay for Christmas and I want to have the right address, will you send me the address on Facebook???
I hope Lindsay is tolerating her feedings a little better tonight. I'm so glad you were able to work at Cole's school on Monday. I know how excited he was to have you there. Like Maggie said, if you're only forgetting a snack these days, you're doing great! I screw things up with Ryan and Hannah on a daily basis! Take care and next time you have to bring snack... knock their socks off!
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