November 20, 2009
Blaze had a routine cardiology appointment yesterday (Nov. 19th). It had been 3 months since he had gone to the cardiologist. He had gained FIVE pounds and grown TWO inches during that time. We were all rejoicing over those stats! He had gained over a pound and grown over an inch since his visit to Dr. Wherry’s last month. He's certainly an energetic, thriving little guy!
His echo yesterday seemed to be "off" according to Dr. Tong. Initially he didn't seem to think that the echo was accurate. Then some of the other stats came back--his blood pressure taken in his right arm and right leg showed a difference of 30 points on the top number, last time there was only a 12 point difference. His pulse ox was off, too. After his second surgery the levels had been in the high nineties, yesterday we couldn't get it above 86. The reason for that is because he is growing so much, his oxygen levels will continue go down as he gets bigger due to "his plumbing". That will change for the better after the final surgery. With much deliberation and a discussion with me, Dr. Tong said, "I'm going to chicken out and plan to see him in January." I was relieved to hear it. In the last month or so there have been days where his coloring was just a bit off. This all points to a narrowing of the arc near where they have restructured his blood flow. Tim and I were told by Children's after his first "ballooning" that he would need to come back for another ballooning in that area before his third surgery. The first ballooning took place the night before his second surgery. I'm not sure that we had passed along that information to everyone, because the actual SURGERY was weighing on our minds.
SO! We are not surprised to hear this news, but is still hard info to hear. It's a dose of reality. I have SO enjoyed this time between surgeries. Blaze is doing so very well. He is a bright, clever kid who loves to climb and get into everything. He wants to figure it all out. It's hard to know that he needs to have another procedure done, but we know it's for the best. God gave us this incredible little boy and we have given him back to God. We are so blessed. This is just another step in our journey.
So what happens now? As soon as certain levels reach a particular point, Dr. Tong will turn Blaze back over to the St. Louis Children's Hospital team of doctors. We don't anticipate that happening until after the new year, but if we see that Blaze is struggling-tiring easily, becoming short of breath or his coloring is off, then we will contact Dr. Tong's office and get him in pronto. Meanwhile, we are planning to have an absolutely wonderful Thanksgiving and Christmas with our amazing son.
No worries, but we appreciate your prayer support and encouragement. We will let you know more when we do. Please continue to check www.blazegilzow.com for updates. We love to read comments in the guest book! AND if you have any questions, please don't hesitate to ask us. We really don't mind. We're so blessed to have you!
Joy & Tim
His echo yesterday seemed to be "off" according to Dr. Tong. Initially he didn't seem to think that the echo was accurate. Then some of the other stats came back--his blood pressure taken in his right arm and right leg showed a difference of 30 points on the top number, last time there was only a 12 point difference. His pulse ox was off, too. After his second surgery the levels had been in the high nineties, yesterday we couldn't get it above 86. The reason for that is because he is growing so much, his oxygen levels will continue go down as he gets bigger due to "his plumbing". That will change for the better after the final surgery. With much deliberation and a discussion with me, Dr. Tong said, "I'm going to chicken out and plan to see him in January." I was relieved to hear it. In the last month or so there have been days where his coloring was just a bit off. This all points to a narrowing of the arc near where they have restructured his blood flow. Tim and I were told by Children's after his first "ballooning" that he would need to come back for another ballooning in that area before his third surgery. The first ballooning took place the night before his second surgery. I'm not sure that we had passed along that information to everyone, because the actual SURGERY was weighing on our minds.
SO! We are not surprised to hear this news, but is still hard info to hear. It's a dose of reality. I have SO enjoyed this time between surgeries. Blaze is doing so very well. He is a bright, clever kid who loves to climb and get into everything. He wants to figure it all out. It's hard to know that he needs to have another procedure done, but we know it's for the best. God gave us this incredible little boy and we have given him back to God. We are so blessed. This is just another step in our journey.
So what happens now? As soon as certain levels reach a particular point, Dr. Tong will turn Blaze back over to the St. Louis Children's Hospital team of doctors. We don't anticipate that happening until after the new year, but if we see that Blaze is struggling-tiring easily, becoming short of breath or his coloring is off, then we will contact Dr. Tong's office and get him in pronto. Meanwhile, we are planning to have an absolutely wonderful Thanksgiving and Christmas with our amazing son.
No worries, but we appreciate your prayer support and encouragement. We will let you know more when we do. Please continue to check www.blazegilzow.com for updates. We love to read comments in the guest book! AND if you have any questions, please don't hesitate to ask us. We really don't mind. We're so blessed to have you!
Joy & Tim
posted by Blaze @ 2:30 PM
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