Friday, November 30, 2012
Canceled
At 2 am Teresa was intubated and started the apheresis process . At 3 am it was determined after viewing the donor heart that it was too damaged . The pheresis is now being stopped and Teresa will be gradually awaken . We are praying for the family who's child went to heaven tonight and for Teresa to have no complications from these procedures .
Thursday, November 29, 2012
UPDATE!
The doctors say that Teresa will need to have a "plasmapheresis" procedure performed on her blood. This procedure is performed so that the immune system won't reject the heart transplant. This is not relatively good news as it complicates the transplant. - alex
Urgent! Heart Transplant!
Hello everyone, this is alex. My parents and Teresa are currently on their way to Philly for Teresa's heart transplant. Please keep them in your prayers!!
Thursday, November 22, 2012
Happy Thanksgiving 2012
Happy Thanksgiving everyone !
We have so much to be thankful for . Teresa had a great week , we had a wonderful Thanksgiving at home and Uncle David made a delicious deep fried turkey . ( We were a little unsure abut the Turkey . We had never deep fried a turkey before for Thanksgiving so Ed bought a turkey breast just to be safe. )
We are anxiously awaiting our visit back to CHOP on Monday . Praying for good news !
We have so much to be thankful for . Teresa had a great week , we had a wonderful Thanksgiving at home and Uncle David made a delicious deep fried turkey . ( We were a little unsure abut the Turkey . We had never deep fried a turkey before for Thanksgiving so Ed bought a turkey breast just to be safe. )
Friday, November 9, 2012
Back Up
Today was Teresa's weekly Doctors visit at CHOP . As we were getting ready to leave, the Doctor received a phone call . He hung up the phone , reached over to feel Teresa's head and asked the Nurse Practitioner to take Teresa's temperature. He wanted to make sure she did not have a fever because he said she may have a heart . She was the "back Up" . The backup recipient is the person who will receive the transplant if "the primary recipients transplant team" declines the heart . The child who was the primary recipient was the same blood type and weight as Teresa but had been waiting a little bit longer than her on the transplant list . He said he would have an answer in two hours if Teresa would receive the heart or not and suggested we go get something to eat as we waited.
Well let me tell you , there was no way I could eat anything . It was the longest two hours of my life.
As we waited, a million things were racing through my head and I was a complete nervous wreck . Luckily , Ed had accompanied me on this trip. I can not imagine having to wait there by my self not knowing . He on the other hand was very calm and had complete faith Teresa would be fine .
After two hours , we finally received the news that the other child had accepted the heart.
We will return to CHOP next week for more testing . Teresa came home today wearing a heart monitor to rule out any arrhythmia she may be having . She has been having several episode where she feels very nervous and becomes very hot . She also will most likely have to start with an NG tube . She has not gained weight in over a year and she is becoming deprived of vitamins and nutrients. As hard as we try to feed her ( it is a never ending battle), she has no appetite or desire to ever eat . We have been trying to avoid the NG tube but going into a heart transplant her little body will need a lot of reserve to fall back on .
Tonight Ed and I are exhausted and frazzled . We are praying God will give us the Grace to handle this . We are also praying for Teresa to stay strong . She did not know what was going on today . To her it was just another visit and some special time alone with Mom and Dad.
Today another child received the gift of life , one family lost
their childs life and we went home to continue to wait for Teresa to
receive her gift of life.
Life is so precious . Enjoy every moment you have with your children !
Well let me tell you , there was no way I could eat anything . It was the longest two hours of my life.
As we waited, a million things were racing through my head and I was a complete nervous wreck . Luckily , Ed had accompanied me on this trip. I can not imagine having to wait there by my self not knowing . He on the other hand was very calm and had complete faith Teresa would be fine .
After two hours , we finally received the news that the other child had accepted the heart.
We will return to CHOP next week for more testing . Teresa came home today wearing a heart monitor to rule out any arrhythmia she may be having . She has been having several episode where she feels very nervous and becomes very hot . She also will most likely have to start with an NG tube . She has not gained weight in over a year and she is becoming deprived of vitamins and nutrients. As hard as we try to feed her ( it is a never ending battle), she has no appetite or desire to ever eat . We have been trying to avoid the NG tube but going into a heart transplant her little body will need a lot of reserve to fall back on .
Tonight Ed and I are exhausted and frazzled . We are praying God will give us the Grace to handle this . We are also praying for Teresa to stay strong . She did not know what was going on today . To her it was just another visit and some special time alone with Mom and Dad.
Life is so precious . Enjoy every moment you have with your children !
Monday, November 5, 2012
Believe In Miracles
"Believe In Miracles", is a non- profit organization collecting donations for Teresa's medical expenses. Contributions can be made payable to Believe In Miracles , P.O. Box 21199 , Catonsville MD. 21228. All donations are tax deductible.
Fundraising , non -profits and donations for Teresa' medical expenses are something that have been a very humbling experience . When we started this journey we thought we would be able to do it all ourselves but God quickly showed us that it would take much more than Ed or I could ever handle on our own . If you feel you are able to make a donation in any way we are eternally grateful and humbled by your generosity . But please know that what we need more than financial help with Teresa's medical expenses are prayers. Prayers will always mean more than money . We have been truly moved and humbled by the love and generosity of so many in our wonderful community . All support is welcome as Teresa's journey to a new heart continues and our "Happily Ever After " awaits us .
We had some very happy Trick or Treaters at our house last week . Dress up is a daily occurrence for Teresa so picking a costume for Halloween was simple ... a Princess. Her decision changed many times . She started out on Halloween as a Southern Belle but decided the skirt was too fluffy so she changed into Belle and then settled on Rapunzel with her blonde hair.
Our visit to CHOP last week was filled with more bad news . Teresa is still retaining a lot of fluid and her liver increased 3cm in one week . She is starting 2 more heart meds. that will hopefully help but the Doctor said she needs a new heart and soon . The transplant team also wanted us to be aware that it may become necessary very soon for Teresa to become an inpatient as she waits for her new heart . I am not sure how we are going to swing this , but we will cross that bridge when it comes . God will provide a way ! This is HIS miracle in process and HE will orchestrate every move.
Emilia is counting down the days to have her Fixator removed in 2 weeks. She is so excited . She will have the fixator removed and The Doctor will insert two rods for stability . A few more months in just a cast and then she will have a brand new arm !
Gemma will have her blood transfusion this week . It will be very interesting to see what her hemoglobin level is this month because she has really been dragging this past week . She is going 4 weeks between transfusions this month instead of every 3 weeks . When I looked at the picture of her and Teresa in the tub together , her little lips were so white compared to Teresa's purple lips .
Lucy is going in to have an MRI of her spine and brain next week . She has been having a lot of headaches and pain in her back lately . Because of her hemi vertebrae, butterfly vertebrae, cervical fusion , scoloiosis and abnormal anatamy , headaches and back pain are all something she has become accustomed to living with . But lately they have really started to bother her. (She is someone that NEVER complains.) So she will be having a few test done to make sure all is well in her little body .
November is proving to be a very busy month already . Praying for the strength to get through it and the peace to be able to enjoy Christmas together as a family .
Do you believe in MIRACLES ? We do !
Fundraising , non -profits and donations for Teresa' medical expenses are something that have been a very humbling experience . When we started this journey we thought we would be able to do it all ourselves but God quickly showed us that it would take much more than Ed or I could ever handle on our own . If you feel you are able to make a donation in any way we are eternally grateful and humbled by your generosity . But please know that what we need more than financial help with Teresa's medical expenses are prayers. Prayers will always mean more than money . We have been truly moved and humbled by the love and generosity of so many in our wonderful community . All support is welcome as Teresa's journey to a new heart continues and our "Happily Ever After " awaits us .
We had some very happy Trick or Treaters at our house last week . Dress up is a daily occurrence for Teresa so picking a costume for Halloween was simple ... a Princess. Her decision changed many times . She started out on Halloween as a Southern Belle but decided the skirt was too fluffy so she changed into Belle and then settled on Rapunzel with her blonde hair.
Our visit to CHOP last week was filled with more bad news . Teresa is still retaining a lot of fluid and her liver increased 3cm in one week . She is starting 2 more heart meds. that will hopefully help but the Doctor said she needs a new heart and soon . The transplant team also wanted us to be aware that it may become necessary very soon for Teresa to become an inpatient as she waits for her new heart . I am not sure how we are going to swing this , but we will cross that bridge when it comes . God will provide a way ! This is HIS miracle in process and HE will orchestrate every move.
Emilia is counting down the days to have her Fixator removed in 2 weeks. She is so excited . She will have the fixator removed and The Doctor will insert two rods for stability . A few more months in just a cast and then she will have a brand new arm !
Gemma will have her blood transfusion this week . It will be very interesting to see what her hemoglobin level is this month because she has really been dragging this past week . She is going 4 weeks between transfusions this month instead of every 3 weeks . When I looked at the picture of her and Teresa in the tub together , her little lips were so white compared to Teresa's purple lips .
Lucy is going in to have an MRI of her spine and brain next week . She has been having a lot of headaches and pain in her back lately . Because of her hemi vertebrae, butterfly vertebrae, cervical fusion , scoloiosis and abnormal anatamy , headaches and back pain are all something she has become accustomed to living with . But lately they have really started to bother her. (She is someone that NEVER complains.) So she will be having a few test done to make sure all is well in her little body .
November is proving to be a very busy month already . Praying for the strength to get through it and the peace to be able to enjoy Christmas together as a family .
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