The goal of this weekend is to keep Hana steady and stable for her Berlin Heart surgery Monday morning. We met with the surgeon yesterday – he is also the one who will do Hana’s heart transplant. Whenever a doctor has to talk to you about a procedure they have to tell you about all the possible risks – so it was a little terrifying yesterday to hear about the Berlin Heart. One thing the surgeon is concerned about is the fever that Hana had yesterday. If she has a fever they can not do the surgery. They want her to be fever free for 48 hours. If she has a bacterial infection they can not do the surgery.
Yesterday they stopped all of Hana’s sedative drips because she seemed overly sedated and her heart rate was getting way too low. She still had a clonidine patch that was starting to kick in. Eventually they took that off too and Hana was not getting any sedation but was still very, very sleepy and still. The problem with this is Hana will eventually wake up and need sedation but also that she will start to go through withdraw again and that could cause her to have a fever which could delay her Berlin Heart surgery. So, the dance right now is upping Hana’s sedation as she starts to withdraw but not so much that her heart rate drops too low.
They also think the ketamine Hana was on before was causing delirium which was agitating her which caused them to increase her other sedatives.
I feel like I know a lot more this time around in the CVICU. I also feel more confident in asking questions. But I think I need to be even more aggressive. These are smart people with medical degrees and lots of training at some of the best places in the country. When they don’t discuss something in rounds I often assume it’s because the answer is so obvious that it’s not mentioned, but this is not always the case. I’ve started pressing them more, especially the fellow who needs to be more aggressive. I see things he doesn’t, I think he needs to pay more attention to how Hana looks instead of just going by the numbers.
Hana's Heart 
Still praying for y’all!
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Prayers continue! And you are absolutely correct… You do need to be involved, ask questions, and inform doctors, nurses, and therapists because they don’t know everything and may not have had time to look at all the details. At the children’s hospital I work at, we had a whole training on the importance of listening to parents because they know their child best and we can easily over-look something.
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I am a friend of your Aunt Betty and met you at family functions when you were growing up. I have been following your postings since the very beginning and an in awe of you and your husband. Your strength and love show through in every posting. Even though I’ve never met Hana I feel like she is a part of my family. I pray for her every day and will continue to do so.
Paula Angilletta, formerly from Marlton, N J
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This is Carol Nunno, a nurse friend of Betty Tourscher. I want you to know that you and your precious daughter are in my thoughts and prayers daily and I have asked so many others to pray for her …and they are gladly doing so. Your sweet baby’s face and pic is before me frequently…I can’t believe the strength, courage, stamina, Faith, love you and your family and your precious daughter have shown. Hana most definitely has the very best of all of that going for her…I will continue to follow your updates with hope and prayers.. Have been following, but this is the first time I have been compelled to write. What a remarkable precious child and what a remarkable previous mom! God Bless you with healing!
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Never ever be afraid to speak up, ask questions, get answers. You know Hana best, the doctors should be fully attentive and listening to you when you’re discussing her care!
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I agree with you. The overall picture of the person is way more important than the numbers. But the numbers also matter. All of it. Stay vigilant and grateful and loving as you are. You know Hana best of all and that is the best info they can get–for real. Love you all. Rock this Hana! So glad there is a good surgeon on your team now.
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You are the boss on that team of professionals. They know the medical stuff but you know your baby. Your questions and input are vital.
Stay strong.
Love from all of us!!
Hugs too!
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Stay strong you are your daughters best advocate you know her better than the doctors ever will. Never hesitate to question or provide insight. Prayers for her healing and strength.
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