Long Awaited Information...

Finally...I have a couple minutes, I have my notebook in front of me, and not as many children around me to fluster me ;)

Yesterday afternoon a lady from the Transplant Coordination Team met with Topher and I and gave us a huge amount of information.

Just to warn you, it really is a LOT of information and may be hard to read and really take it all. So I apologize in advanced if its incoherent or doesn't make very much sense or is slightly jumled. I'm doing my best. :)

To begin with, before she can be put on the Transplant List, there are a few tests they have to perform to verify her eligibility:
1. Echocardiogram
-This determines how serious the problem with her heart is
2. Blood Work
-This is to determine her blood type and ALSO to safeguard...i.e. determine if she has been exposed to HIV, STDs, CMV, EBV, Hepatitis etc...
3. PRA
-Don't ask me what it stands for...I don't know. I do however know that this last test is to check for any antigens or antibodies that may already be present in her system. This part of the test needs to come back at 0% so that they know there isn't anything that would immediately start rejecting and attacking a transplant.

Once all of these tests are performed and if she qualifies, she would be put on a Wait List that spans across the country. She is listed according to size, how sick she is, and blood type.

They also have a sort of grading scale. The highest you can be on the list is a 1A, next 1B, next 2, and then I believe it jumps down to a 7 or something.

Each of these levels has 2 or 3 conditions that will justify the baby being in that category. These qualifications are things like what kind of medication the baby is on, if they're on a ventilator, how old they are, if they're at home, and things like that.

So a 1A has to be on a life-sustaining medication, or ventilator for example. In Grace's situation, this would include her Prostaglandins, as well as her ventilator, so she would be a 1A to begin with.

Once they're on the list, the AVERAGE wait time, for anyone on the donor list is 4-6 months. It normally is actually even longer than this for babies however, because babies just don't die very often, and when they, do, a lot of the time it is from a heart defect.

One of the first things that would happen once she is put on the list is a new procedure called the "Hybrid". This procedure consists of them doing a surgery that puts bands around her pulmonary arteries, and then putting a catheter up through her leg to place a shunt in her heart. The purpose of the shunt is to keep the PDA open, (right now the Prostaglandins are keeping this valve open). So, once this procedure is done, the idea is that she could come off the prostaglandins, her saturation and oxygen levels would all stabilize, and we would be able to take her home with us while she waits for a heart. The only downside about this procedure is that since she would be taken off the prostaglandins, she would go down on the list from a 1A to a 1B.

The next step, is that Topher and/or I would be given a pager to carry with us at all times so that when/if a heart is found for her, we would be notified of where/when and the condition of the heart. Sometimes, even once a heart is found, it still doesn't cut it because the surgeon will go to look at it and it doesn't meet the necessary specifications. So, its definitely a lengthy tedious process.

Once she were to get a heart, she would be in the hospital for recovery for about a month or so, and would then come home with about 10-15 medications. 3 of these medications would be immunosuppressants to make sure that her body doesn't reject and attack the heart. The rest would be antibiotics, stomach meds and blood pressure meds. Eventually she would be weaned off of a lot of these medications, but she would be taking 2 immunosuppressant medications for the rest of her life. The major downside of these is that she HAS to take them, but their one large side effect is kidney damage. After a couple years, the damage just gets worse and worse, sometimes leading to kidney failure.

Her follow up care after the surgeries would be 2 visits to the Dr. a week for the first 3 months. Then 1 visit a week for a long time, and after a couple years, their goal is a visit every 3 months. Each of the visits is expected to be 3-4 hours because they do an echocardiogram each time as well as blood work.

The survival rate after the first year of a heart transplant is 85%. Then each year it goes down. After 5 years its 75% and after 10 years its 65%. But then again, there are people that are in their late teens and early 20's that are still on their first heart. It varies a lot.

Some things to know about the Primary Childrens Transplant program is that they haven't actually done transplants at all for the past 7 months because their Transplant Director left. In the past 3 months, they have only done 3 transplants. And, they haven't transplanted a heart for an HLHS baby since the 1990's.

Topher and I are supposed to meet with the surgeons that perform the surgeries sometime next week to ask them more questions about their experience and statistics. Hopefully that will help us make the best decision we can.

Some of you have asked why we can't do the transplant at a different hospital...although this is an option...its not a very good one for us. We can't just go to a different hospital for a month to get the tranpsplant done. We would have to completely relocate to the state the hospital is in, and live there for a year or two before we would even be put on the list there. Then we would have to stay for another year or so after the surgery for follow up care. So, it would be a complete life alteration for Topher and I as well as a very stressful move for Grace.

Theoretically, once the babies have a transplant, they experience a very normal high quality of life. They can do anything that other kids can do, they just have a few extra Dr. visits and medications.

Topher and I do think that this is a blessing in disguise. That it really is a good thing that she can be considered for this option. However, it seems very overwhelming and stressful as well as a very lengthy process where the end is never really in sight.
We are still wanting to pray and fast for the right decision. Please don't think that the decision has already been made or that stories or experiences really help us make our decision. We really just want to pray and pray some more about what is best for our baby and for us. We hope that what is right for her and for us is for her to stay with us as long as possible, but until we have a confirmation from Heavenly Father, we really don't know what the right thing is.

We would like to ask everyone to pray and fast for us and for Grace this Sunday as we try to prepare ourselves for one more meeting with the rest of the Doctors and as we make our decision this coming week. Pray that we won't be led my our own personal desires, but that we'll be able to focus on what the Lord has in store for us and for Grace.

We love you all and so greatly appreciate all of your love and comments. We're amazed at the response we've gotten from every corner of our big family and we're so grateful that we've been able to get all this support and that we've been able to keep everyone updated.

Thank you again for all your love and support. Again, just keep praying! We know it makes a world of difference.

Love Buggy, Topher and Baby Grace


AJ Finnegan said...

Thank you so very much for the update, and the explanation of everything.

Yes, we will be happy to pray and fast with you this weekend. We feel honored to be a part of Grace's life.

I have all the confidence in the world that you two will receive guidance from the Lord. Whatever decisions you make will be inspired by Him :)


Andrew and Marti Enke said...

We are praying for you and topher and amazing baby Grace every second. We are so inspired by your strength and insight and love you very much. We will be praying and fasting on Sunday.

Kalani said...

Our family will definitely be praying and fasting for you this weekend. Thanks for the updates. I am amazed you are able to do that on top of everything. You two are an inspiration and I am so smitten by your beautiful daughter. I know in my heart that Heavenly Father will guide you and protect baby Grace. We all love you here so much. Kiani wanted to give her heart to the baby. She wants to do anything to help. We are glad you are in our family.


princess jen said...

I love you so much Buggy-boo and Topher too. You are such an inspiration of faith and staying strong in the face of adversity. I'm glad I got to see Gracie again today. She was beautiful in her little purple headband!! We love you lots! And we're glad you came to Joey's birthday party.

Kim said...

We will be praying and fasting and thinking of you all. Your faith has touched us so much and we know that you will be able to know what Heavenly Father’s will is for your beautiful little Grace.

crowfamily said...

Alysia and Topher,
Thank you for the update. You are contastantly in my prayers. Since it is just me and the kids this weekend, I will definately be fasting. If you want, I can pass on some contact information for you. A good friend of mine went through the transplant process with her little boy. He lost his kidney's to cancer when he was around a year old and had his kidney transplant when he was 4. I know that it's not a heart transplant, but if you just want to talk to someone who has been through the process and dealing with the medications, she really good at sharing/talking.

Anonymous said...

Thank you so much for all that detailed info! Wow! You continue to amaze us!

We are praying and thinking of you always!!!

God will give you a peace and direction! I know He will!

Enjoy this very special holiday with your lil Grace!
Hugs and kisses all around!

Grandpa Chuck & Donna xoxoxoxo

Sara & Company said...

Sending all of my love and prayers. I know that you want what is best for Grace and that your faith and devotion are strong. We will be sending our love to you as you are faced with so many hard decisions and challenges. I love you!