EmilysDad
08-05-2009, 01:02 PM
It's hard for us to believe that Emily's heart transplant was six months ago. We returned to Children's for Emily's 6 month check up and biopsy this week. Her biopsy was again a 0, meaning no rejection. We were very happy and relieved to have her getting past this milestone with flying colors. She has gained back the weight she lost and looks great.
We can't say the biopsy day went smoothly, but they got it done, and the results were good. As we were told, even though you are scheduled to be first case (7 am) and turn your life upside down to get there on time does not prevent sick babies being born and emergencies over the weekend. Or to have one of the cath labs break down. Our 7 am test became a 12 pm test, with the fun extra five hours of fasting. Ugh. At about four hours into waiting, when it seemed calm and they were threatening to get ready to take her in, she smiled at us and said, "If this was an episode of 'House', I'd have a seizure right now."
But she did well, it was good to see some of our transplant team friends. Better yet, we got out of there and were able to have a fun dinner in Boston with friends.
She still struggles with low energy and nausea at times, but overall is doing well. She has found that CoQ10 (Ubiquionone) seems to give her more energy. That makes sense since her underlying pathology is mitochondrial, and CoQ10 acts on the electron transport chain in mitochondria.
The summer is speeding by. Emily is working very hard to finish AP World History and 10H English. We're proud of her for finishing three courses in June with a 90+ average despite missing 88 days of school last year. It will come down to the wire to be a junior when September 10th rolls around but we're confident she will pull it off.
Emily has a trip to Chicago planned for August 19th to see family right after the AP World test. She feels a little like her summer was stolen away by having to catch up for all the school she missed.
We also had a fun time in Boston doing her first college visit to BU. The conclusion was that BU is a great place, and she definitely loves the idea of college! So we've gone from heart failure through transplant to planning for college in less than a year. Do you think she'll have anything to say in her college essay that speaks to her ability to persevere?
Hope you are all having a great summer.
Deb and Bob
We can't say the biopsy day went smoothly, but they got it done, and the results were good. As we were told, even though you are scheduled to be first case (7 am) and turn your life upside down to get there on time does not prevent sick babies being born and emergencies over the weekend. Or to have one of the cath labs break down. Our 7 am test became a 12 pm test, with the fun extra five hours of fasting. Ugh. At about four hours into waiting, when it seemed calm and they were threatening to get ready to take her in, she smiled at us and said, "If this was an episode of 'House', I'd have a seizure right now."
But she did well, it was good to see some of our transplant team friends. Better yet, we got out of there and were able to have a fun dinner in Boston with friends.
She still struggles with low energy and nausea at times, but overall is doing well. She has found that CoQ10 (Ubiquionone) seems to give her more energy. That makes sense since her underlying pathology is mitochondrial, and CoQ10 acts on the electron transport chain in mitochondria.
The summer is speeding by. Emily is working very hard to finish AP World History and 10H English. We're proud of her for finishing three courses in June with a 90+ average despite missing 88 days of school last year. It will come down to the wire to be a junior when September 10th rolls around but we're confident she will pull it off.
Emily has a trip to Chicago planned for August 19th to see family right after the AP World test. She feels a little like her summer was stolen away by having to catch up for all the school she missed.
We also had a fun time in Boston doing her first college visit to BU. The conclusion was that BU is a great place, and she definitely loves the idea of college! So we've gone from heart failure through transplant to planning for college in less than a year. Do you think she'll have anything to say in her college essay that speaks to her ability to persevere?
Hope you are all having a great summer.
Deb and Bob