Sunday, April 28, 2013

On the road again

After much consideration and consultation we will be headed back to MUSC tomorrow.  Wednesday Brinkley had a milk scan that did not give us any answers.  This was followed by an mii on Thursday that ran into Friday.  Due to the time that the test finished we won't have results from it until tomorrow.  Dr Avant told me on Friday morning that he did not anticipate the mii would produce any answers for us.  

The next step would be to start pulmonary testing.  After discussing this, we were told that it would involve sedation and that would send us to MUSC.  If the mii shows that reflux is the basis of our problems, the procedure to correct that (Nissen) would have to be done at MUSC due to sedation and the placement of his pacemaker.  We initially considered going to MUSC immediately, so this was the confirmation that I needed to know that it was time.  

Friday night I spoke to Dr Boyd, the resident on duty, about my concerns and that we would like to move.  I was so nervous about telling her.  That people pleasing side of me tried to take over.  Earlier in the day I talked to one of our specialists about the possibility of transferring and she said, "I can tell you feel guilty about this."  She was exactly right.  I felt terrible telling these people who have been giving my child excellent care that I needed to move on.  Dr Boyd helped put it in perspective for me.  She said that we can't keep bringing him to the hospital every other week.  It's not good for him and it exposes him to too much.  She also said that we need an answer and agreed that we may have exhausted our options here.

Dr Berning is on duty for the weekend and he was so helpful yesterday.  He was very understanding and wanted to help us do whatever we need to help Brinkley.  I am hoping to speak to him again today to get more details about how the transfer will work.  He was more than willing to let Brinkley stay in PICU for the weekend so that we did not have to move to the floor.  

When we get to MUSC they will redo many of the same tests that have already been done, but we are hoping the the timing will be better on these and he will actually have "episodes" during the testing this time.  

Yesterday he was much more himself and he laughed and played most all day.  He enjoyed Reese coming to visit.  Reese climbed into the crib with him and entertained him for long time.  It was so precious how much fun they had with each other.  I can't wait for this to be the normal at home!

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