The swelling in Izzy's abdomen slowly got better with the
additional diuretics, but even on Monday, her belly was still quite
large and her veins way too big, so Dr. Cutler (cardiologist)
wanted to see Izzy. So, Izzy and I spent two hours at Dr. Cutler's
office today.
First, we colored and practiced writing our name (we are always preparing for kindergarten).
Next, we went back for weight (29 pounds), height (37.5 inches), blood pressure (92/62), and EKG. Here is Izzy hugging her new love, Birthday Dog, on the EKG table. Birthday Dog was recently made at Build-A-Bear thanks to the generosity of others (see two updates ago if you don't know how crazy spoiled Izzy got for her birthday). Izzy received enough gift cards to Build-A-Bear that she and Phinney each got animals last Friday. This dog plays "Girls Just Wanna Have Fun" and has Lightening McQueen shoes (of course).
After the EKG, we went to the echo room, where Izzy was amazingly good, even without a pacifier. Instead of fighting when the echo tech pressed on Izzy's belly and neck to get the final pictures, she simply said "Ow!"
Finally, we went to a room to wait for Dr. Cutler. She stopped by almost immediately, but had to look at the echo first, so she said she'd be right back, but we ended up waiting and waiting and waiting.
Fortuitously, just as Dr. Cutler went back to look at Izzy's echo, Pittsburgh called to talk about Izzy. Needless to say, Dr. Cutler talked with them before she came back to us! Izzy was discussed at Pittsburgh's conference yesterday, but they could not decide whether she should come out yet to be evaluated for transplant with the information they were provided. They need a lot of blood work done first.
What we do know is that Izzy is not automatically disqualified from transplant due to her DiGeorge's Syndrome and her weak immune system. If fact, with cases like Izzy where the child needs IVIG before transplant, they can actually do a bone marrow transplant at the same time as the lung transplant as a way to "fix" the immune problems (granted, after transplant, you are put on immunosuppression drugs). Anyway, Izzy is not automatically disqualified due to her immune problems. That being said, Pittsburgh needs a complete immune system panel for the board to consider. We had to do that for Dr. Doshi anyway in May, so we will just do it sooner.
Another automatic disqualifier is high pre-transplant PRA numbers. PRA stands for panel reactive antibodies. In other words, this is a test that will tell us how much Izzy's body will fight the transplanted organs. If her numbers are too high pre-transplant, then there is no way her body will accept transplanted organs. Because Izzy currently has a porcine (pig) conduit and had a homograph conduit before (donated human tissue), her body is likely to have an elevated PRA. To get that number, is just a blood draw.
Once Pittsburgh has those numbers, they can make the final decision of whether Izzy can even be considered for a heart-lung transplant. In the mean time, they wanted to reiterate to us that they tell their patients a heart-lung transplant only gives the patient 3 to 4 years if they survive, especially with Izzy's underlying pathology. It is not unthinkable that Izzy could last with her own heart and lungs another 3 years, so they want us to really think about it before we continue heading down this path. We might put Izzy through a huge, very risk surgery to get her not much more life, but a lot more pain. Honestly, that is what is weighing heavily on us these last couple of weeks. I'm not sure I want to do that, especially considering it would mean splitting our family in half while waiting for the transplant and taking Izzy away from everyone and everything that she knows and loves. But, we are not deciding anything until we hear EVERYTHING.
We will have the blood draw after Izzy's nap so that we can get the numbers to Pittsburgh ASAP, so that they can have everything for next Tuesday's meeting. At the same time, we have to do liver panel to see why Izzy's belly swelled up. Dr. Cutler said Izzy's echo actually looked better than December, but suggested that is probably due to the increase in diuretics. Izzy's inferior vena cava didn't look large though and her liver didn't feel large, so Dr. Cutler didn't think the swelling was liver congestion. That being said, Dr. Cutler noticed that Izzy's bruising doesn't look normal. She thinks that may be liver related as well, hence the liver panel. We should know more on all of that in a couple of days. We are to continue giving the higher dosage of diuretics every other day from now on as well.
I would be remiss if I didn't thank Love Quilts. They gave Izzy the quilt below, with handmade, cross stitched squares from people across the country. It is lovely and the kids love it!
In closing, I'll share some fun pics from Easter. Spring came to Southeast Michigan for the weekend and we enjoyed it immensely! (We'd like it back.)
This picture is when Phin found his Easter basket. I thought his friends from Keller would love it!
First, we colored and practiced writing our name (we are always preparing for kindergarten).
Next, we went back for weight (29 pounds), height (37.5 inches), blood pressure (92/62), and EKG. Here is Izzy hugging her new love, Birthday Dog, on the EKG table. Birthday Dog was recently made at Build-A-Bear thanks to the generosity of others (see two updates ago if you don't know how crazy spoiled Izzy got for her birthday). Izzy received enough gift cards to Build-A-Bear that she and Phinney each got animals last Friday. This dog plays "Girls Just Wanna Have Fun" and has Lightening McQueen shoes (of course).
After the EKG, we went to the echo room, where Izzy was amazingly good, even without a pacifier. Instead of fighting when the echo tech pressed on Izzy's belly and neck to get the final pictures, she simply said "Ow!"
Finally, we went to a room to wait for Dr. Cutler. She stopped by almost immediately, but had to look at the echo first, so she said she'd be right back, but we ended up waiting and waiting and waiting.
Fortuitously, just as Dr. Cutler went back to look at Izzy's echo, Pittsburgh called to talk about Izzy. Needless to say, Dr. Cutler talked with them before she came back to us! Izzy was discussed at Pittsburgh's conference yesterday, but they could not decide whether she should come out yet to be evaluated for transplant with the information they were provided. They need a lot of blood work done first.
What we do know is that Izzy is not automatically disqualified from transplant due to her DiGeorge's Syndrome and her weak immune system. If fact, with cases like Izzy where the child needs IVIG before transplant, they can actually do a bone marrow transplant at the same time as the lung transplant as a way to "fix" the immune problems (granted, after transplant, you are put on immunosuppression drugs). Anyway, Izzy is not automatically disqualified due to her immune problems. That being said, Pittsburgh needs a complete immune system panel for the board to consider. We had to do that for Dr. Doshi anyway in May, so we will just do it sooner.
Another automatic disqualifier is high pre-transplant PRA numbers. PRA stands for panel reactive antibodies. In other words, this is a test that will tell us how much Izzy's body will fight the transplanted organs. If her numbers are too high pre-transplant, then there is no way her body will accept transplanted organs. Because Izzy currently has a porcine (pig) conduit and had a homograph conduit before (donated human tissue), her body is likely to have an elevated PRA. To get that number, is just a blood draw.
Once Pittsburgh has those numbers, they can make the final decision of whether Izzy can even be considered for a heart-lung transplant. In the mean time, they wanted to reiterate to us that they tell their patients a heart-lung transplant only gives the patient 3 to 4 years if they survive, especially with Izzy's underlying pathology. It is not unthinkable that Izzy could last with her own heart and lungs another 3 years, so they want us to really think about it before we continue heading down this path. We might put Izzy through a huge, very risk surgery to get her not much more life, but a lot more pain. Honestly, that is what is weighing heavily on us these last couple of weeks. I'm not sure I want to do that, especially considering it would mean splitting our family in half while waiting for the transplant and taking Izzy away from everyone and everything that she knows and loves. But, we are not deciding anything until we hear EVERYTHING.
We will have the blood draw after Izzy's nap so that we can get the numbers to Pittsburgh ASAP, so that they can have everything for next Tuesday's meeting. At the same time, we have to do liver panel to see why Izzy's belly swelled up. Dr. Cutler said Izzy's echo actually looked better than December, but suggested that is probably due to the increase in diuretics. Izzy's inferior vena cava didn't look large though and her liver didn't feel large, so Dr. Cutler didn't think the swelling was liver congestion. That being said, Dr. Cutler noticed that Izzy's bruising doesn't look normal. She thinks that may be liver related as well, hence the liver panel. We should know more on all of that in a couple of days. We are to continue giving the higher dosage of diuretics every other day from now on as well.
I would be remiss if I didn't thank Love Quilts. They gave Izzy the quilt below, with handmade, cross stitched squares from people across the country. It is lovely and the kids love it!
In closing, I'll share some fun pics from Easter. Spring came to Southeast Michigan for the weekend and we enjoyed it immensely! (We'd like it back.)
This picture is when Phin found his Easter basket. I thought his friends from Keller would love it!
Both kids got scooters, so Izzy
had to ride it as soon as the rain went away on Sunday.
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