We had a good weekend with my friends from Ft. Worth. They came in on Saturday night and we took them to see Ira on Sunday. When Jake saw Ira he said it was like seeing someone famous. On Wednesday I went to an all day meeting and Laura went up to see Ira. Jake and Abbie stayed at our home to watch Sophia. When we returned on Wednesday evening our laundry was done, our burned out light bulbs were changed, our house was clean, our fridge was restocked and Sophia was well taken care of. It was nice coming home last night. Thanks, Jake and Abbie, for all your help.
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Ira had a hard day on Wednesday. He didn't take the bottle at all yesterday and his reflux is getting worse. The reflux issue is totally normal for CDH kids. But no matter how normal this is, it's hard to see him gag like he does. It looks so painful.
The good news is (and probably the reason he didn't take a bottle yesterday) that Ira is now spending eight hours a day off the CPAP. At two different points during the day he spends four hours off the CPAP and on the nasal cannula. He works so very hard to breathe. I take for granted the simple process of breathing but Ira works for it and works hard. You can see him working and hear him working.
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Our surgeon came by Ira's room on Tuesday while Laura was in the room. The surgeon was with a group of surgeons from the children's hospital in San Francisco. He was giving the San Fran doctors a tour of the NICU and pointed out Ira to say that Ira was the reason you don't give up on severe cases of CDH.
I'm so glad we are in NYC for Ira's sake. The doctors and nurses have worked hard for Ira's life.
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Ira had a hard day on Wednesday. He didn't take the bottle at all yesterday and his reflux is getting worse. The reflux issue is totally normal for CDH kids. But no matter how normal this is, it's hard to see him gag like he does. It looks so painful.
The good news is (and probably the reason he didn't take a bottle yesterday) that Ira is now spending eight hours a day off the CPAP. At two different points during the day he spends four hours off the CPAP and on the nasal cannula. He works so very hard to breathe. I take for granted the simple process of breathing but Ira works for it and works hard. You can see him working and hear him working.
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Our surgeon came by Ira's room on Tuesday while Laura was in the room. The surgeon was with a group of surgeons from the children's hospital in San Francisco. He was giving the San Fran doctors a tour of the NICU and pointed out Ira to say that Ira was the reason you don't give up on severe cases of CDH.
I'm so glad we are in NYC for Ira's sake. The doctors and nurses have worked hard for Ira's life.
posted by jch at
7:23 AM
3 Comments:
Precious Ira!!! Keep giving those doctors reasons to marvel!
Lah, I remember when we were at our HS reunion a good year and a half ago and you were telling us how you were moving to NY. Reading all of this about the amazing things those doctors are doing makes it even clearer why your family was led there. I'm so glad to read that Ira is off the machine for such big chunks of time. I miss you and am thinking about you!
Beth
I'm so glad we are in NYC for Ira's sake. The doctors and nurses have worked hard for Ira's life.
I remember Katie expressing the same sentiment once...
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