Another week has passed and we are still waiting to hear from
Children's Hospital of Pittsburgh to see if they are willing to
even consider seeing Izzy in person. I did hear from Dr. Cutler
earlier this week though. The hold up right now is getting all of
Izzy's records to Pittsburgh. They want reports and test results
from every single one of Izzy's specialists. If you've been
following this page for any length of time, you know that list is
extensive. Thankfully, Dr. Cutler is the person gathering
everything for us. And the only stuff she is waiting on is records
from Children's Hospital of Michigan and Mott, but I have a feeling
it is more CHM. (We love everyone there dearly, but getting records
can be like pulling teeth!)
After Pittsburgh gets all of the records, Izzy will be presented to the board of doctors involved in making transplant decisions to see if they would even consider her for a heart-lung transplant. Many times, there are underlying pathologies (other than the heart and lung problems) that automatically "disqualify" a person from consideration of transplant. If Izzy's case passes that scrutiny, then we'll set an appointment for her to be seen in the clinic there to begin the "official" process of seeing whether she is a candidate for a heart-lung transplant. Either way, Dr. Cutler expects we should know whether we will make the trip to Pittsburgh by the end of this month.
In the meantime, we try to maintain some sense of normalcy. Unfortunately, Izzy got sick again Friday night/Saturday morning. She has a lung infection with a nasty cough. Luckily, we always have oral steroids in the house for her. She managed to get away from the doctor's office yesterday morning without a shot (a big deal)! We're still fighting fevers and her oxygen is hovering too low for comfort (around 90). Thankfully, she has remained fairly comfortable and we haven't officially gotten below 90% oxygen saturation when I've measured, so we haven't had to make the obligatory trip to the ER. (Going there would land her in the hospital for at least a couple of days and probably add more bugs for her immune system to fight.)
When Izzy's fever is gone, she is pretty happy. These pics were taken yesterday, right after Izzy came home from the doctor and found oodles and oodles of new toys dropped off by friends!
And if you were to stop by our house right now, Izzy would make you come down to my office and look at the pile of pink.
Izzy's 5th birthday is two weeks from today and we are having the pinkest party ever--complete with all pink foods, including shrimp, strawberry lemonade, and pink cupcakes (all Izzy's choices). Izzy is beyond excited to turn 5. She keeps telling us that she is a big girl now that she'll be 5. We have kindergarten roundup on the 20th as well and Izzy is READY for kindergarten. She so wants to go to school with her big brother! This turning 5 business and being a big girl has helped some in the behavior department. Izzy had been showing escalating anger since we heard that the cardiologists would not be trying to "fix" her heart any more. She had been having frequent violent outbursts, lots of screaming, and HUGE fits. Tuesday was especially bad. But after a huge fit, Izzy and I talked about how big girls aren't mean to the people they care about. And we discussed that just because you are sick, sad, or angry, it was not a reason to be mean. That was the first moment that she showed some clear understanding that her anger was related to the doctor's news. She went to sleep after that and has been much more well behaved. I like to think it was because of the talk and the breakthrough, but it could have been that she had to spend an entire night without a pacifier (and please don't tell me she is too old for a pacifier--it calms her when she gets needle pokes at least once a week, it is her only comfort when she is sick, hurt, in the hospital or having tests and she can keep it forever if it helps her get through the days). Whatever the cause of her turnaround, I'm grateful because the more often she behaves, the more often we can offer positive reinforcement, so we can continue down this path toward less tantrums.
Thanks for checking in on Izzy,
Mel
After Pittsburgh gets all of the records, Izzy will be presented to the board of doctors involved in making transplant decisions to see if they would even consider her for a heart-lung transplant. Many times, there are underlying pathologies (other than the heart and lung problems) that automatically "disqualify" a person from consideration of transplant. If Izzy's case passes that scrutiny, then we'll set an appointment for her to be seen in the clinic there to begin the "official" process of seeing whether she is a candidate for a heart-lung transplant. Either way, Dr. Cutler expects we should know whether we will make the trip to Pittsburgh by the end of this month.
In the meantime, we try to maintain some sense of normalcy. Unfortunately, Izzy got sick again Friday night/Saturday morning. She has a lung infection with a nasty cough. Luckily, we always have oral steroids in the house for her. She managed to get away from the doctor's office yesterday morning without a shot (a big deal)! We're still fighting fevers and her oxygen is hovering too low for comfort (around 90). Thankfully, she has remained fairly comfortable and we haven't officially gotten below 90% oxygen saturation when I've measured, so we haven't had to make the obligatory trip to the ER. (Going there would land her in the hospital for at least a couple of days and probably add more bugs for her immune system to fight.)
When Izzy's fever is gone, she is pretty happy. These pics were taken yesterday, right after Izzy came home from the doctor and found oodles and oodles of new toys dropped off by friends!
And if you were to stop by our house right now, Izzy would make you come down to my office and look at the pile of pink.
Izzy's 5th birthday is two weeks from today and we are having the pinkest party ever--complete with all pink foods, including shrimp, strawberry lemonade, and pink cupcakes (all Izzy's choices). Izzy is beyond excited to turn 5. She keeps telling us that she is a big girl now that she'll be 5. We have kindergarten roundup on the 20th as well and Izzy is READY for kindergarten. She so wants to go to school with her big brother! This turning 5 business and being a big girl has helped some in the behavior department. Izzy had been showing escalating anger since we heard that the cardiologists would not be trying to "fix" her heart any more. She had been having frequent violent outbursts, lots of screaming, and HUGE fits. Tuesday was especially bad. But after a huge fit, Izzy and I talked about how big girls aren't mean to the people they care about. And we discussed that just because you are sick, sad, or angry, it was not a reason to be mean. That was the first moment that she showed some clear understanding that her anger was related to the doctor's news. She went to sleep after that and has been much more well behaved. I like to think it was because of the talk and the breakthrough, but it could have been that she had to spend an entire night without a pacifier (and please don't tell me she is too old for a pacifier--it calms her when she gets needle pokes at least once a week, it is her only comfort when she is sick, hurt, in the hospital or having tests and she can keep it forever if it helps her get through the days). Whatever the cause of her turnaround, I'm grateful because the more often she behaves, the more often we can offer positive reinforcement, so we can continue down this path toward less tantrums.
Thanks for checking in on Izzy,
Mel
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