Yup you read right, Noel is back in the hospital. We came down Tuesday night (in an ambulance this time) because Noel got worse again. An abdominal x-ray showed that Noel still had Barium in here stomach from a swallow study done 10 days earlier. This is the same thing that happened on her last admission. The moral of the story is no more barium contrast studies for Noel. She has been doing much better ever since we got her bowels "cleaned out." We are currently in the middle of a blizzard so I don't think we'll get discharged for at lease a couple of days.
Other than that Noel went to the eye doctor on Tuesday and was diagnosed with exotropia, which means that her eye's don't work together; because of her weak muscles her eyes are also affected. The most significant effect on her vision will be her depth perception. This diagnosis was a hard one for me to hear; I think it was the realization that her disease effects her from her head to her feet. We have been so lucky to see Noel make so much progress in the last year, but it's at appointments like these, when we get another diagnosis, when it makes me realize she does have a very horrible muscular disease. She has a follow up appointment with her eye doctor in a month and she may end up with glasses to help correct her vision. Thanks ahead of time for all the new prayers and thoughts.
Tina
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Steps for Noel
My feet were burning, the sweat started to drip into my eyes and my throat was as dry as a desert; but I didn’t even care. No pain or discom...
5 comments:
Oh guys, I am so sorry! At least this time, the problem was discovered early. Hope you guys get home soon, blizzard or not. Praying...
Alicia
I wish I could be there to give you a hug...sending you one from Indiana.
Hope you can get out soon and that they can figure out the problem. I too think these kids suffer from a horrible muscle disease. It is very hard. We will be praying.
Hi Tina,
Here's to hoping you and Noel get out of the hospital soon. Ann is a great resource for vent and trach management. I know she connected with you.
You are so right about enjoying each moment you are out of the hospital and not taking even simple things like a stroll in the mall for granted.
Anne
Wow Tina, you and Noel have been spending way too much time in the hospital. Interesting to hear that you are going to Nationwide Children's in Columbus. I have a good former-trach mom friend who now works as a parent advocate there. I'll be sure and hook you up when the time comes for you and Noel to make the trip. I'm sending lots of positive vibes and prayers your way. I'm sorry you guys are having such a rough time of it. Hang in there.
Hugs,
Ann
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