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Patience

posted Jul 25, 2013, 7:10 AM by Melissa Burke
So, we are still not home. Good news though - after over 36 hours hooked up to the EEG machine (poor guy!), the results were once again negative for seizures. But the doctors feel like Peter is having more Brady/desats that make it unsafe for us to bring him home at the moment.

We discovered yesterday that he is pretty anemic so we decided to give him another blood transfusion in the hopes that will increase his oxygen carrying capacity and hopefully stop the episodes. The frustrating thing is that he was supposed to be getting iron to help with the anemia (as all babies are anemic in the beginning) but I discovered on Tuesday that somehow he wasn't getting it. It was discontinued after his last transfusion and we were told it would be reinstated last Saturday, but that never happened. I sometimes joke that going to the hospital everyday is my new job, but situations like these make me realize how important it is that we are at the bedside everyday to watch over Peter's care and ask the right questions!!  Regardless of why he's anemic, we are praying that this might be his magic ticket home. We are going to observe him over the next several days to see how he responds and then maybe we can retry the room in over the weekend.

Interesting developments on the MRI front...WakeMed came back and said they were sticking with their initial interpretation of Peter's 8 day MRI (the one were they said things looked much improved). Also, apparently his films were discussed at a radiology conference at Duke late last week and none of the neuroradiologists could agree on the interpretation. So the lack of consensus gives us hope. Again, the MRI is just one prognostic indicator and if no one can agree on what it says, then we'll just have to have the patience to wait for Peter to show us what he can do. First step...getting him home. We know it will still be a long road ahead once we do, but all our energy is focused on it for the time being. We'll pray for patience for the rest.

Our sweet bundle

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