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Wednesday, June 22, 2011

The Long Road Ahead

Little did we know that that first day at Rainbow Babies hospital would be the beginning of a very long road. Her first appointment was with ENT. They did a scope that day in the office and found that although her airways were smaller than normal and sort of "smushed" that they were normal. They also did a hearing test which Caelyn of course failed. They scheduled her for a barium swallow study the following week.

In the mean time, we met with Caelyn's geneticist. She got the results of Caelyn's blood work which all came back normal. Her geneticists are at a loss. They suggested I follow up with all the specialists to get a full work-up on Caelyn hoping that this might give us some clues at to what is going on. So we left that day and made all of our follow up appointments. We were able to get into cardiology right away. They found out that she had a PFO, which I was told was okay and that they weren't concerned. They want to see her back when she is around 6 for a follow-up to make sure it is closed. We also got an ultrasound of her kidneys which came back normal. Thank God!!

This same week, Caelyn began Help Me Grow. This program has been great. They hooked us up with Early Intervention which has been an amazing thing for Caelyn. We went for her initial assessment and we found out that Caelyn was developmentally delayed in all areas (which we already suspected, but suspecting and confirming are two different things). They made a plan with goals for her to work on.

This brought us up to the time for Caelyn's swallow study. They took her back to radiation and only one of us could go back with her because we also had our 2 year old and she was not allowed back there. In the next 5 minutes, our lives would change forever. They started feeding Caelyn and within 2 minutes they immediately stopped the test. They took me outside and informed that Caelyn was aspirating everything that she was eating and that something had to be done right away. Boy, was I shocked when they said that "something" was Caelyn had to be hospitalized to get an NG tube and Cory and I would have to go through training before she would be released home. This was probably one of the hardest moments for us. We thought we were just going for a test, and now not only were we not going to be able to take Caelyn home with us but now she can no longer eat by mouth and we will have to learn how to tube feed her. This added a big burden to her care. We were a little overwhelmed. I just felt so bad for her. So was so little, innocent, and helpless!

1 comment:

  1. I love your blog!! The only suggestion I have is (& idk if others agree bc it may be just me) is to maybe explain what some of these things are?? Like ENT, PFO, NG tube (which I know what that is & maybe if this blog is meant for others going through this as well they may know as well) but I don't know what the other two are.

    Great job though <3 You're a strong woman