I had a long somewhat depressing talk with one of the Dr’s last night. Mike had to leave the room, but I like this Dr. He seems to be the only one willing to give the hard ugly truth about what it happening and what could happen. Mike calls him the angel of death. I now see where my daughter gets her flare for the dramatic.
Dr. Muntez (I’m fairly sure I spelled that wrong) said that Zoe holds for the record for the longest in hospital wait for her blood group. He has other Apos patients waiting at home but at the hospital it usually happens much faster than it is for her. The Dr’s are frustrated. There have been other transplants since we got here and he said every time the phone rings everyone thinks ZOE! but then they find out it’s for someone else. It’s disappointing for everyone. The sad fact is that as her wait grows, the margin of safety shrinks. There are 2 mechanical options available to help sustain her. Those bring on a increased risk of stroke and with her irregular heart rhythms the risk is greater for her. 1 of the options is approved for use in the US. However, once it’s put in, it can only be used for 1-2 weeks so the clock really starts to tick. The other hasn’t been approved for use but can be used under what’s called compassion. Research shows favorable results in Europe but use in the US hasn’t been approved yet. It’s understood when consent is given that the patient isn’t part of a clinical trial, but the findings from it’s use will be included in the research data. With it’s use 1/2 of the patients make it through transplant. 1/2 do not so you have a 50/50 shot. As it stands 5% of patients waiting for transplant don’t make it through the transplant for a variety of reasons. With the use of these mechanical devices the risk doubles to 10% who don’t make it and the saddest truth is that not everyone listed lives to see the transplant. Some die on the list. It’s sad and it’s ugly, but it’s reality and no one is safe from reality. Mike has asked me not to be realistic in in presence. I said I would be happy to blow sunshine up his butt as long he wants me to. He is appreciative. Unfortunately I don’t know the name of these devices. I’m assuming that 1 of them is EKMO. ( i think i have that acronym right)
Here’s what’s happening now. Saturday her blood pressure dropped dangerously low. They started Dubotamine and a calcium drip to try to correct that. The problem with dubotamine is that it makes the heart work harder and no one wants her heart doing that for very long. So once her bp came back up they weened her off of it. They also pulled back on her tube feedings. They think too much blood was going to the intestines to aid in digestion.
They are having a harder time sedating our little prize fighter. They started a paralytic because when she wakes up and thrashes around (she’s very itchy) she can damage her esophagus with the breathing tube. They had to go up on all her sedatives and paralytics yesterday and as a result her bp dropped low again. They started the dubotamine again and her bp is stable again so they’re working to ween her off again. The tube feeds are at a slow a drip. Enough to keep her digestive system stimulated, but not enough to warrant actual digestion.
Because of the IV in her right ankle she has a small infection. The IV is coming out and they are starting her on some antibiotics until the cultures come back and they see exactly what they are dealing with. The infection presented itself as a series of red lines across her inner thigh. When someone pressed on it this morning and asked her if it hurt, she shook her head yes. That’s a possible reason for her fevers and for her increased agitation the last few days.
On the up side her donor pool as been increased. They measured her fist Saturday to see exactly how big they can go. (Fun fact: make a fist….that is the approximate size of your heart) I think now we’re accepting 1/2 her size up to 2x her size. They also increased the search area from 1500 sq. miles to 2200. That’s almost nationwide. The Clinic itself has 2 Lear jets they use. They have employed a company out of Atlanta that has a faster jet which allowed for the area increase.
So for now she’s stable and slightly more paralyzed for her own protection. Dr. Boyle is leaving town tonight and we all know what that means. Hearts tend to come while he’s gone. We didn’t get lucky last time, but that was a work trip. This is a vacation and he will gone for 3 days. Half my family is out of town this week as well so he says we should definitely get lucky. The stars may be well aligned for us during this holiday week.
As always, the clock continues to tick.
November 25, 2008 at 1:03 pm
Continued prayers for Zoe to get that heart, Chrissy. She’s my priority at prayer time – ahead of my family. This kiddo deserves a healthy, long life.
November 25, 2008 at 1:36 pm
I’m praying as hard as I can for a Thanksgiving miracle for Zoe. I wish there were words…(((HUGS)))
November 25, 2008 at 1:42 pm
Obviously, it’s hard to find the “right” words in times like this, but please know that all of us at work are praying for Zoe and you as well Chrissy.
November 25, 2008 at 3:22 pm
Still praying up a storm here for a miracle for your precious little fighter.
November 25, 2008 at 3:33 pm
That’s great news that they expanded the search and parameters for a heart! Continued thoughts for you and prayers for your miracle.
November 25, 2008 at 5:10 pm
Zoe, Mrs. Tanner and family
Just a little note to let you know that Miriam Pence and family are still praying for zoe and your family we think about all of you every day and check the posting also.
November 25, 2008 at 5:58 pm
I think about you guys everyday. I wish i could come visit more. i’m going to try again soon. i got the flu shot. if you need anything please let me know. I love you guys. NIck sends his wishes as well.
November 25, 2008 at 11:08 pm
As a friend of Zoe (I brought her lunches last year I always loved her hugs and seeing her great big smile when I brought her, her lunch she is the most vibrant little girl I know.). I wanted to tell you that you are right God’s will might be to take her, but you have to understand that Gods will, will happen. I know this is hard to deal with. It is always hard when a young child dies. I will continue to pray for Zoe to get better if it be in God’s will. If the Lord does decide to take her though I will continue to pray for you. I really hope that Zoe does get to stay here, but it is a comforting fact to know that if it is her time she will be in God’s arms. I love you guys. I pray that God’s will be done, and I pray that Gods hand be in your life as well. Watch facing the giants it might actually help you in this situation even though it isn’t about death it is about what can happen if you truely trust God the outcome won’t always be in your favor, but their is a reason for everything that happens. And as theperson above me said Prepare For Rain!!! and Please tell Zoe I said hi :-). I wish I could come see her, but I don’t have my flue shot and am unable too. My love is with you all.
November 25, 2008 at 11:26 pm
Hi Sweetheart – I just want to give you the biggest hug ever all the way from OK. Uncle Justin is sending you an Army shirt home with me….so….we are ‘expecting’ a good Thanksgiving this week that we will be thankful for the family that makes the toughest decision ever & that is to give you a ‘new’ heart & when Uncle Justin comes home in just a few short weeks you will be ready or almost ready to model it for him. We are all sending you our love while we are gone. We’ll be home this weekend & you are priority 1 to see when we get home. Hang tough….don’t you give up, don’t you quit, don’t you stop….you ‘CAN’ do it! Something I heard over & over on the video Uncle Justin gave me from his platoon in BCT. They’re a family- a strong family of support & they made it! They accomplished what most of us can not even think of doing…you are one of those few who are just as strong & your family, friends & the angels above are your support…holding you up, pushing you up…supporting you! You can do it Zoe – I know you can…Hang tough sweetheart…we all love you!!!
November 26, 2008 at 8:45 am
Dear, brave Zoe,
You are such a special little girl and in the thoughts and prayers of so many people. I can’t tell you how many times a day I pray for you. “Trust in the Lord with all your hear,” dear Zoe. I love and miss you,
November 26, 2008 at 10:04 am
I am constantly thinking about you and Zoe. My heart goes out to you and I pray all the time. Good luck over the weekend – Zoe is a fighter and she can do it!
November 26, 2008 at 11:05 am
Zoe,
I am praying that this turns out to be a most glorious Thanksgiving for you and your family. We all miss you very much at school. Hurry back to us with that wonderful smile and spunky attitude. Besides, you don’t want to miss Christmas do you? We all love you and miss you.
November 27, 2008 at 9:10 am
Hello Zoe,
I am pray that you have a wonderful Thanksgiving in that you get your new heart that you deserve you are much to young to have to go through this. I visit your site everyday to see how you are doing in hopes that one day i will see that you got good news about your heart. You and your family are strong so hang in there. Chrissy stay strong i know you have it in you, if there is anything i can do please let me know. Happy Thanksgiving. Will you give Zoe a hug and kiss for me please.
Love,
Shannon