Saturday, March 24, 2012
Last Friday we started the process to be evaluated for a heart transplant for Teresa. Yes, just a heart transplant, not a heart/lung transplant. To even be considered for a heart transplant is a miracle all by itself. I still can not believe that Dr. Hanna feels she is at this point after being told for almost two years it would NEVER happen.
To say the process was stressful is an understatement. I knew a little about what would be involved but we were not fully prepared for the enormous amount of information that was presented . There is just so much to learn, plan for and consider.
We first met with the transplant coordinator. She discussed the whole process from pre transplant to post transplant. We learned Teresa could be matched with a heart from a donor 80% her size to twice her size. Her wait time to receive a heart depends on her wait list status. 1A status are patients who are the most critical and are in the hospital. 1B status and then 2 status. Teresa would be a 2 status because she is waiting at home . She will be tested for Panel reactive Antibodies. High PRAs lessen the chance of receiving an organ that will not be rejected. Rejection occurs when the body tries to destroy a transplanted organ . Almost all transplants are rejected at some point with the average heart lasting 10-15 years before she would require another transplant.
This is usually a surprise to most parents but 10 years sounds wonderful to me considering what the alternative is right now for Teresa.
Next we met with the Psychologists . I think she wanted to see if we would be mentally stable enough to go through this process . I think we fooled her because she seemed to be very content with all of our answers . (I wouldn't say Ed and I are mentally stable right now considering the past week ) but if she thinks we are, we're going with it. Her last question was "How are we handling all the stress ?". I don't know what answer she was looking for or what is considered the correct answer. I could see Ed was going to answer that question with , "How do you think we are handling the stress? We have 9 kids , 5 special needs daughters, one daughter gets a blood transfusion every 3 weeks another is in heart failure, another is getting ready for surgery, our insurance may drop us in July , I am self employed and losing money because I had to take off today to come up here and answer this ... question ". BUT luckily I intercepted the question first and told her why we had chosen to adopt Teresa and how we rely fully on GOD to help us with the stress . We take one day at a time .
The pharmacist was the next stop. We had a "test" on all of Teresa's current medicines . After she felt comfortable that we were not missing any doses and we would be capable of giving her the new meds. post transplant she allowed us to move on to our next stop.
Blood tests- 14 vials of blood !!!! The phlebotomist was unsure if she would be able to walk after losing so much blood , but she did great . She didn't even cry .
The day ended with us speaking to one of the transplant Cardiologists. He was in the process of reviewing all of Teresa's medical history and was unsure yet what his decision would be. He did say he had never seen a child survive a heart transplant with lungs in the condition Teresa's are. We definitely did not want hear this . But yesterday we met with Dr. Hanna and he is the expert on Pulmonary Hypertension and he feels she would survive the transplant but it would be VERY high risk and she could struggle for a few weeks.
Yesterday we also met with the nutritionist . Her main concern is Teresa's weight . She has plateaued at 29 pounds and needs to gain more weight . She gave us a lot of helpful advice on how to add calories to all of her foods.
After another echo. , 6 minute stress test, EKG and more blood work we were done!
We arrived home last night totally exhausted from the whole process.
We are now trying to figure out (should their answer be "Yes") , how we will juggle everything. (mostly life at home while i am gone with Teresa). Another major concern is if our insurance will cover the transplant and if so how much of it . Since Ed is self employed we purchase our own insurance. For the past five years our insurance premium has doubled every year because of all the girls medical requirements. This past July, after having Teresa on it for one year our insurance once again doubled and stated the increase from "over usage". I can only imagine what it will be this year especially after seeing Heart Transplant Evaluation on the statement this week. The insurance department of the transplant team suggested that most families do fundraising to cover what insurances do not .The estimated U.S. average first year heart transplant fee is -$787,700 . O.K.....just for ONE YEAR !
Trying to wrap my head around all of this information has left me feeling in complete panic. When I think of it all , I just don't know how it will all happen . But then again a year ago we did not think a heart transplant would happen and here we are being evaluated . So obviously God is in complete control and moving things in the direction of His Will.
Should Gods will be a heart transplant - we are praying for peace and to trust that God will work out all of the what ifs...
Should Gods Will not be a transplant - we are praying for the same thing.
Sometimes, if God doesn't give you the Miracle , you will be the Miracle for someone else...
Posted by Our Family at 3/24/2012 08:53:00 PM
Sunday, March 11, 2012
What was suppose to be a routine blood transfusion for Gemma last Monday was a little unusual . I could tell her Hemoglobin was low from the way she looked and was acting. It ended up being the lowest it has been in 2 years . She also has lost 4 pounds in one month . We are not really sure how or why that happened . Then 1 hour into her transfusion she started having difficulty breathing and became very listless. Her transfusion was stopped and she was watched closely . After a few hours she was feeling much better and we went home . So this week we are headed back for another transfusion because her hemoglobin is still very low . Hopefully this week will be uneventful .
This past weekend Hopkins sent the girls to a Princess Party at Port Discovery . The girls loved meeting all the real princesses and having lunch with them . They then had a fabulous time playing in the Museum. Guess who LOVES to surf or I should say who wants to learn to surf. Miss Gemma Rose ( she is a little fish all summer playing in the pool . She loves the water .) Right now her favorite movie is Soul Surfer . The part where Bethany teaches a little girl to surf is her favorite scene because the little girl looks just like her . When that part comes on she jumps up and down yelling " that's me , that's me " . ( the child does actually look just like Gemma ) .
For Teresa's heart transplant we are one step closer . We found out that our insurance will cover the consult on Friday . We are still waiting to hear if it will cover the entire transplant , but this is at least a small step in the right direction . Friday we will meet with the Nurse Practitioners, Social Worker and Psychologist. Teresa will have 1/2 the labs drawn ( the other 1/2 will be drawn next week . It is too much blood to be taken at one time )and she will have an ultra sound of her vessels in her groin and neck . Next Friday we will meet with the other half of the Transplant Team (Cardiologists, Surgeons , Transplant coordinator , Dr. Hanna and more testing ). In the meantime we are reading up on ALL the material they have sent us on transplants .
We are one step closer !!!!!!
Thank you all for your continued prayers !!!!
Posted by Our Family at 3/11/2012 07:32:00 PM
Sunday, March 4, 2012
Friday I talked with the Transplant Team Coordinator for Teresa's heart transplant . We will meet with the entire team very soon . There is So much information to think about and process. I am feeling a bit overwhelmed by it all. I can hardly believe we are at this point. Only by Gods love and mercy have we gotten here. HE has perfectly orchestrated every step. So many more things need to fall flawlessly into place but I know in Gods time they will.
Five things we are focusing our prayer on ;
1. For Teresa to be accepted for a Heart transplant. She will need to go through a lot of testing to see if she qualifies.
2. For our insurance to cover the transplant and all medical care 100%.
3. For God to provide a loving, caring Nanny to help take care of the girls at home while I am in Philly for weeks, possibly months with Teresa and the provisions to afford her salary .
4. For Teresa to stay healthy and her heart to stay strong as she waits.
5. Peace- Peace for the family that will lose their child and give Teresa life.
Tomorrow Miss Gemma Love will have her blood transfusion and then on Tuesday she will have an MRI under general anesthesia. We are praying she does not have any further damage to her liver or heart and for her ferritin levels to have come down (she is still over 3,500 after 2 years on meds. to lower it . Normal levels are between 10-300.)
Emilia went shopping with Mayzie this weekend ! They both did fantastic at the mall . Mayzie and Emilia will graduate on March 31st., then she will start having sleep overs and eventually move right on in to our crazy life. She will go from a very quite house to one filled with noise , laughter and a lot of hugs and kisses for her all the time . All the girls can not wait for her to come home permanently .
Emilia' next surgery has been scheduled for April 25th. She wanted to have her arm done first instead of her leg. Her Doctor felt this would be fine since both of her legs are stable right now. He will lengthen her arm and reposition her hand . She will be in the external fixator device for almost 6 months . The one good thing about this is she will still be able to go swimming all summer with it on ! Mayzie will be there with her through the surgery , recovery and many months in PT.
The one major thing I have learned over the past year and a half is Patience. I am the type of person that wants things done yesterday . Having to wait ,learn patience and give up control has been pretty difficult . But Teresa's Miracle is "IN Process" in Gods time , not mine . There were so many lessons we needed to learn first and God is making that very clear to us now . Without patience and perseverance I don't think we would be ready for this next step in Teresa's journey.
Posted by Our Family at 3/04/2012 06:33:00 PM