McKenzie's surgery is set for Monday, April 13, 2009. Once
again, the Monday after Easter. We just have to keep her completely
healthy between then and now. If she gets the slightest sniffle, we
have to call the surgeons. I know most kids go in lock down mode
during this time. Unfortunately, we don't have that choice. Izzy
has to go to day care since Dale and I both have to work. She has
been doing very well, so we will hope it continues. I have
everything crossed that she will stay well long enough to get the
surgery.
Another unfortunate thing is that the surgeon who performed her last surgery, Dr. Walters, will be unable to perform this surgery due to having surgery of his own. We could have chosen to wait for him to return, but it was not indicated for McKenzie to wait that long. She is a prime candidate for the surgery right now and if we wait too long she will pass her prime (not a good thing--too much distress). Dr. Walters was very happy with her progression and does not think it will be necessary to do anything to her pulmonary arterties. Thankfully, they have grown from strings into workable PAs. YEAH!!! Unfortunately, they will have to use a conduit for the other fix (it will be a human graft). The conduits tend to calcify very quickly, especially in little ones like Izzy. So we were told to anticipate another surgery in 1 to 5 years to replace the conduit. While it can last five years, we were told to expect closer to one year for the first replacement since it will be so small.
Dr. Walters also assured us that he does not anticipate the complications we had the last time despite this being a more complex surgery. He thinks McKenzie's size (16.5 lbs) and strength are in her favor. I hope he is right. I don't know if I could handle going through that again. It wasn't until recently that I found out Izzy's experience after her first surgery was not normal and most babies don't have to remain intubated for over a month after their surgery and do come home much sooner than Izzy did. So, let's hope that she follows the expected trend this time (around 10 days in the hospital). I'd really love to NOT earn free parking from the hospital (greater than 15 day stay or is it 25).
Dr. Walters also told us not to expect too much change in her strength and endurance after the surgery since she is so strong now. Bascially, he told us we should see a pinker baby. If that's all this surgery does for her on the outside, that's okay. The constant blue lips and hands and ashen face is very disconcerting.
So, we celebrate her first birthday this weekend (she'll be one on Saint Patty's Day) with only the grandparents. We are keeping extra germs to a minimum. And once she is completely healed from her surgery, we will celebrate with a party for her newly fixed heart.
0n an un-heart-related note, Izzy saw her immunologist Tuesday. We are re-testing her immune system. Last June, she came back within the normal range, but low. They want to re-test again since she does have the 22q deletion, which usually causes thymus problems--lowers T-Cell counts and related immune cells. His main concern was how hard the adenovirus hit her in November. It does not normally hit so hard, except in someone with a weakened immune system. So, we re-test. Her immunologist is also a pulmonologist and he is very happy with her lungs. He was very concerned that the adenovirus may have done permanent damage. Luckily, the only lung issue she has is a small collapsed portion in her upper right lobe that has been there since she first came home from the hospital (so no real concern).
Lastly, we heard from Izzy's geneticst for the last time (22q deletion doc). We have another specialist on our list. Izzy gets to see a crainofacial specialist to check for palate problems. Yet another possibility with the 22q deletion. (The 22q deletion is what caused Izzy's heart problems, her not to have a parathyroid, and some/many other problems.)
On a very positive side, Izzy can get from laying down to sitting as of last weekend all on her own without problem. She crawls backwards a lot more lately and can get on all fours wtihout problem (that is how she got to sitting). She is constantly trying to pull up on furniture and we officially lowered her bed for the first time. She loves it. She is a big girl. At the same time Phinney got his big boy toddler bed. No more tented crib. Amazingly, he hasn't started jumping out of the bed and running around the room with it. Izzy is saying mama and dada. Not with meaning yet, but at least she is saying the sounds a lot. She is starting to understand sign language too. And, she can get finger foods into her mouth. Her speech therapist is very happy with her progress.
Mel
Another unfortunate thing is that the surgeon who performed her last surgery, Dr. Walters, will be unable to perform this surgery due to having surgery of his own. We could have chosen to wait for him to return, but it was not indicated for McKenzie to wait that long. She is a prime candidate for the surgery right now and if we wait too long she will pass her prime (not a good thing--too much distress). Dr. Walters was very happy with her progression and does not think it will be necessary to do anything to her pulmonary arterties. Thankfully, they have grown from strings into workable PAs. YEAH!!! Unfortunately, they will have to use a conduit for the other fix (it will be a human graft). The conduits tend to calcify very quickly, especially in little ones like Izzy. So we were told to anticipate another surgery in 1 to 5 years to replace the conduit. While it can last five years, we were told to expect closer to one year for the first replacement since it will be so small.
Dr. Walters also assured us that he does not anticipate the complications we had the last time despite this being a more complex surgery. He thinks McKenzie's size (16.5 lbs) and strength are in her favor. I hope he is right. I don't know if I could handle going through that again. It wasn't until recently that I found out Izzy's experience after her first surgery was not normal and most babies don't have to remain intubated for over a month after their surgery and do come home much sooner than Izzy did. So, let's hope that she follows the expected trend this time (around 10 days in the hospital). I'd really love to NOT earn free parking from the hospital (greater than 15 day stay or is it 25).
Dr. Walters also told us not to expect too much change in her strength and endurance after the surgery since she is so strong now. Bascially, he told us we should see a pinker baby. If that's all this surgery does for her on the outside, that's okay. The constant blue lips and hands and ashen face is very disconcerting.
So, we celebrate her first birthday this weekend (she'll be one on Saint Patty's Day) with only the grandparents. We are keeping extra germs to a minimum. And once she is completely healed from her surgery, we will celebrate with a party for her newly fixed heart.
0n an un-heart-related note, Izzy saw her immunologist Tuesday. We are re-testing her immune system. Last June, she came back within the normal range, but low. They want to re-test again since she does have the 22q deletion, which usually causes thymus problems--lowers T-Cell counts and related immune cells. His main concern was how hard the adenovirus hit her in November. It does not normally hit so hard, except in someone with a weakened immune system. So, we re-test. Her immunologist is also a pulmonologist and he is very happy with her lungs. He was very concerned that the adenovirus may have done permanent damage. Luckily, the only lung issue she has is a small collapsed portion in her upper right lobe that has been there since she first came home from the hospital (so no real concern).
Lastly, we heard from Izzy's geneticst for the last time (22q deletion doc). We have another specialist on our list. Izzy gets to see a crainofacial specialist to check for palate problems. Yet another possibility with the 22q deletion. (The 22q deletion is what caused Izzy's heart problems, her not to have a parathyroid, and some/many other problems.)
On a very positive side, Izzy can get from laying down to sitting as of last weekend all on her own without problem. She crawls backwards a lot more lately and can get on all fours wtihout problem (that is how she got to sitting). She is constantly trying to pull up on furniture and we officially lowered her bed for the first time. She loves it. She is a big girl. At the same time Phinney got his big boy toddler bed. No more tented crib. Amazingly, he hasn't started jumping out of the bed and running around the room with it. Izzy is saying mama and dada. Not with meaning yet, but at least she is saying the sounds a lot. She is starting to understand sign language too. And, she can get finger foods into her mouth. Her speech therapist is very happy with her progress.
Mel
15 Message(s)
No comments:
Post a Comment