I heard from Dr. Smoot today, just updating us on the first pass at the cardiac tissue that was taken during Annie's cath last Monday. Everything looked good under the microscope -- no ongoing cell deterioration and no storage issues (glycogen). The only thing they noted that wasn't quite normal was some fibrotic tissue between the cells. Dr. Smoot said that could indicate some scarring, so I asked about what Dr. Levine had told us last summer regarding Annie possibly having a heart attack early on in the pregnancy. It's just impossible for them to know what happened or what it meant for Annie's heart -- if anything -- but it would be hard to think the in utero diagnosis and the DCM aren't related.
Dr. Smoot also said she feels as though we are 80% there towards ruling out metabolic issues, and we have definitely ruled out some of the bigger ones.
I asked about why we aren't adding a beta blocker at this point, too. She said that there really isn't any evidence yet that beta blockers are helpful in children with DCM who are asymptomatic. The evidence is there that it helps adults with DCM who are asymptomatic, but it just hasn't been shown to do anything for young children. She says it is still there as a possibility, but at this point she would rather wait and see how Annie does with her current meds. We'll see her again on April 6th and have another echo at that point. We'll see Dr. Johnson here in NH on the 29th, but we won't have an echo done then. It will be a long wait until that next echo!
We're seeing our regular nurse practitioner tomorrow. I'm glad, because I think I noticed something this afternoon that could be worrisome. Annie seemed a bit blue around her mouth -- something we have been told to look for. But the good news is that she was 12 1/2 pounds today! And happy, chatty, and laughing as always. The photo is after her bath tonight. She was talking and laughing up a storm!
Dr. Smoot also said she feels as though we are 80% there towards ruling out metabolic issues, and we have definitely ruled out some of the bigger ones.
I asked about why we aren't adding a beta blocker at this point, too. She said that there really isn't any evidence yet that beta blockers are helpful in children with DCM who are asymptomatic. The evidence is there that it helps adults with DCM who are asymptomatic, but it just hasn't been shown to do anything for young children. She says it is still there as a possibility, but at this point she would rather wait and see how Annie does with her current meds. We'll see her again on April 6th and have another echo at that point. We'll see Dr. Johnson here in NH on the 29th, but we won't have an echo done then. It will be a long wait until that next echo!
We're seeing our regular nurse practitioner tomorrow. I'm glad, because I think I noticed something this afternoon that could be worrisome. Annie seemed a bit blue around her mouth -- something we have been told to look for. But the good news is that she was 12 1/2 pounds today! And happy, chatty, and laughing as always. The photo is after her bath tonight. She was talking and laughing up a storm!
3 comments:
Love that picture!!! Too cute! I'm glad the news was good today, and I hope all goes well with Annie's appointment tomorrow. :)
What a great picture,Honey. Thanks for posting it. We are not yet home but already plotting our next trip up. Love to all, Mom
So much information to process. It'll give you a head ache for sure. So much to keep track of, so much to think about, so much to learn. It will get easier, really it will. You are doing such a great job and I am so proud of how you are handling everything. Our prayers continue for you.
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