The last few days, and especially the first part of today, felt really discouraging. Shortly after Micah's cath on Thursday we were originally told they'd want to start weaning him off ECMO on Saturday. Saturday morning rolled around and they told us that Micah's surgeon, Dr. Jonas wanted to delay weaning until Monday in order to allow his collapsed lung to rest more. A few hours later we were told that Dr. Jonas decided his PAs still looked too small and they'd want to keep Micah on ECMO for a few days after Monday. How frustrating!!!!
Besides that, the weekend was pretty uneventful. Ray had a conversation with Dr. Futterman (an ICU attending) about the factors of weaning the ECMO. One thought that really sticks out is when he said, "Micah has a tendency to get worse over time."
Then last night around 2:30am when I called the nurse to check on Micah, he told me Micah had blood in his stool. They were, and still are, concerned that he might have NEC (a serious infection of the intestines). He's on antibiotics and they're monitoring his abdomen for hardness and discoloration and they'll continue to monitor his stool.
So when Ray and I got to the hospital this morning we were feeling super discouraged about everything. Micah's condition just slowly seemed to be deteriorating.
To top off our seriously discouraged moods, we had a conversation with his Cardiologist, Dr. Donofrio about what they planned to discuss at the Surgical Conference today. I asked her to be frank with us about Micah's condition and she said "Micah's a very sick baby and it is possible he could die." I've always known from the beginning that that was a possibility but actually hearing it was very difficult. I felt very hopeless and began Googling other blogs about babies who never made it off ECMO.
Probably not the best idea.
The Surgical Conference ended at 6pm and Dr. Donofrio found us afterwards to give us the update. She said all of Micah's doctors looked at images from his cath along with images from an echo they performed earlier today. They were pleased with the images and all agreed that Micah can start to be weaned off ECMO tonight! Praise God! I'm afraid to get excited because multiple doctors are hesitant to take this step... But it does give me hope!
Anyways that's the latest. I can't believe the number of emotions I'm capable of feeling in one day. Hopefully tonight's weaning goes well!
Hi...I was given your blog's address by a friend. We have a son who weaned successfully from ECMO at 3 weeks old at Children's in DC, and he's doing wonderfully now 4 years later. I remember how trying those days were and will send up a prayer for Micah!
ReplyDeleteMay God lift your heart during this trying time. No matter what happens, God loves you and Micah and is holding you all in the palm of His hand. Micah is blessed to have you love him and be a channel of grace to him.
ReplyDeleteMarion Smedberg
We are praying so very much for you guys!!! I also have my Bible study group pulling for you! Thank you for the updates; you are both incredibly strong people!
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