I think I've mentioned before that we've had excellent care at the NICU. But one doctor, in particular, is especially dear to us. Her name is Dr. C---- and she gives James as many opportunities as possible to prove himself. She also told us that she's been thinking about us a lot and wanted to tell us that we shouldn't feel guilty about what happened. She said that based on all the information we had we made a good, educated decision with the best intentions for our son, family, and selves. She said that everything seemed healthy and normal, and there would have been no way to know anything like what happened would have happened. It felt really good to hear someone say that - especially someone in the medical world.
Dr. C is also the one who ordered this third cookie swallow, believing that this third time just might be the charm. Technically she is no longer James' doctor since they rotate every month, but she met with Travis and I yesterday to discuss possibilities for our son's future.
We discussed the swallow. James will need to take at least 20-30ml of a mixture of rice cereal and formula with no aspirations and no more than a few "shallow penetrations" of food into the "at risk area" of the windpipe. A full bottle for him is 80ml. The rice cereal - formula mix is like a thick milkshake. He'll have to be on formula because breastmilk breaks down starches and would thin down the rice cereal by the end of the feeding - dangerous for James. Right now the options that stand before us are:
A) James does well tomorrow at the test. He then does well throughout the weeks, slowing moving from two bottles of 80ml to eight, weaning off the feeding tube that currently goes down his nose and into his belly. He then comes home taking all this feedings with a bottle.
B) James does well tomorrow at the test. He begins taking two bottles a day but has trouble finishing them because he tires out or doesn't work up to all eight feedings through a bottle. They would then surgically place the g tube into his belly and he would be sent home to continue on his bottle / tube feeding schedule.
C) James does not do well at the test. They immediately schedule surgery for the g tube and once it is healed he comes home. About three months later he'll have another cookie swallow to see if he is ready for a bottle then. However, as I understand it, the chances will be smaller then.
Holding James tonight, Travis and I talked about going to high school football games to watch the E------m boys play. It felt like a real possibility.
I don't know what will happen tomorrow. I feel nervous for James and the results. I didn't line up a sitter to be with Ben and L and I don't know if that's good or bad. I don't know if I can watch the test with so many hopes and fears tied up in it.
Please pray that James will pass. Please ask God for another miracle and pray that he will pass with flying colors, continue to improve, and not need a g tube.
How wonderful to have such a caring and encouraging Dr caring for James. She is right you know. You and Travis are excellent parents and no matter what we do or plan for our kids, bad stuff just happens. That is the world we live in. I'm so glad that you got a day out with your two older kids today. It looks like you had a great time. Our whole family is praying for that cookie swallow tomorrow morning!! -Sarah HedmanReplyDelete
Bonnie- I am so glad that you are getting such great care for James. I am also glad to hear that Dr. C is on your side and affirmed to you that none of this was your fault or could have been seen. Praying today at 8:45 for James! And, I love the Tanner's pictures. We are heading out on Sunday for Aubrey's birthday. I am glad that you got to have a nice day with your friend and children. You need it!ReplyDelete
I'm praying hard this morning for little James!!ReplyDelete
So glad you have competent and compassionate caregivers at the hospital. It was right and good of this doctor to let you know that what happened to James could not have been foreseen. Thank you for sharing about this special doctor. Love you!ReplyDelete