Friday, September 17, 2010


It's just a mystery- no weight gain since her surgery. So frustrating because we increased her daily volume and she's now getting everything and not spitting up a lot. I know it seems like we should ignore the dietitians and doctors and just increase her volume by a lot more ( I'd throw in some heavy whipping cream if it's wasn't for her milk allergy!), but we have to be careful about doing that. Too much fluid from too much formula can mean more fluid in her lungs and we can't have that.

It's a fine science figuring out how much she needs, trying to gauge how much energy she is using and figuring out how to make her gain weight at a steady, healthy rate. Hopefully she will start gaining soon and there aren't any other issues we don't know about.

On that note, we are adding one more doctor to the list....her doctor and myself are unsatisfied with the progress of her therapy for her torticollis (what we call "crooked neck"). She's had x rays and the doctor doesn't think she has scolliosis, but now he wants to get a second opinion. Thankfully we have the Scottish Rite hospital here with renowned orthopedic doctors so hopefully she can get in within the next month. Because with her torticollis so bad she will be delayed in sitting up and crawling, etc.because she is off balance. I'm glad we are getting a second opinion because I'm so tired of doing her exercises and stretches all throughout the day and never seeing any results. On top of that, our sweet baby has been so fussy lately and I truly think it's because she's so frustrated and can't do anything but lay there, which she has been doing for 10 months now.

At her post op appointment yesterday they took off all the bandages and we saw the button up close. I almost passed out when she started cleaning all the gunk that had formed around it and pressing her fingers all around it. Now each time we use it, we attach the tube to the button and then take it off when she's finished. Now that it's not taped down she can easily grab the tube if it's in reach- if she yanks it, she will pull the button out. "So you mean she'll just have a hole in her stomach?!" I asked. Yes, she will, she said, and we'll have to put it back in or take her to the ER. I told her I'm not sure I'm cut out for this. You see, having been surrounded by tubes and wires her whole life, Maggie is comforted by them. She can find them so easily, even reaching under her clothes or blanket to find one. So we have to be so careful. I really think I will faint if she does manage to pull it out (which they say is a when, not if). Hopefully I'm not by myself when it happens...

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1 comment:

  1. My son has a cecostomy tube...unfortunately i was the first one to pull it out by accident...yes i did feel terrible but the doctors said it happens...praying you are not on your own...hubby was home here when i did it to jacob.