2 weeks ago the girls and I met with the transplant team to discuss what a heart transplant would mean for Teresa.
I was having a difficult time finding just the right words to explain a heart transplant and everything that would be involved . I did not want to say too much but on the other hand I did not want to give too little information . Mostly I was having a hard time explaining it to Teresa. I did not want her to feel unprepared for how she would feel when she woke up . To her going to CHOP has always been a fun event because she had Mommy all to herself and we both enjoyed our special time together . Even though every visit involved a blood test , she was OK with it . Waking up from a heart transplant will be very different . We keep talking about how great she will feel after she gets her "NEW" heart but really haven't mentioned how she will feel after surgery .
Meeting with the team was very beneficial not only for the girls but also for me . At first everyone was very quiet and not talking . Finally Mary started asking some very deep questions. What the team suggested was for me not to tell too much . Just answer the questions or concerns the girls may have. If they want to know more they will ask . Answer each question with positive outcome . ( Mary asked if Teresa would die ), Their response was that they and all the Doctors would do everything they could possibly do to make sure Teresa was OK. . When the question of where Teresa's new heart would come from ( I can not remember who exactly asked this question ) , Emilia raised her hand and said , " I know where hearts come from ... GOD ". With out losing it in front of all the girls , the team and I all agreed that Yes Emilia, hearts do come from God. Out of the hearts of children the simple and pure truth . Here I was worrying about how to explain in detail everything and they had simply figured it out already .
Teresa always talks about when she gets her new heart how she will not have to wear her oxygen or how she will be able to run and play longer but the other day after school she said , " When Jesus gives me my new heart I can drink out of the water fountain in school . "
This is such a normal thing for children but for her she is NEVER allowed to touch a public water fountain anywhere because of germs . It made me stop and think wow, such a simple little thing could bring so much happiness to her .
This week we are gearing up for our second week of school . The first week Teresa did very well. She came home a little more tired than normal but we are hoping as she adjusts to the routine her body will be able to adapt . She really loves school and all her new friends .
A friend of mine had to have a liver transplant due to a virus. She spent years with a failing liver and finally got a transplant. She woke up in the ICU and was in lots of pain she said, BUT she also said she already felt better. I think because it was the lver they also did not have as many options for pain relief. So, I hope that will experience the feeling of healing while they manage her pain well.
ReplyDelete"Out of the mouths of babes" is SO true sometimes...! I just wanted to add a quick "hang in there" to the entire family -- I've been known to tell people about you with the phrase, "crazy in the best possible way" and a big smile. You might also like to know that one of the "little old ladies" at the nursing home where I work, who I've told about your family, regularly comes up to me specifically to ask how Teresa and her sisters are doing and to remind me she's praying for them as hard as she can. :-)
ReplyDeleteAnd the tears flow - can't wait to share that wonderful insight with the family tonight!
ReplyDeletehugs to all - and prayers -
aus and co.
Hoping for the best for Teresa and your entire family. I have followed your blog for a long time and I want you to know that I am inspired by your story.
ReplyDeleteOut of the mouths of babes!! Both tough questions and simple straightforward truths, got to love it! Continuing to pray for all your needs.
ReplyDeleteThe Carr Family