We got a phone call yesterday that Henry’s surgery has been cancelled by the surgeon due to either personal or a business conflict. We now wait unil he publishes his June availability within the next week or so to reschedule.
Friday, March 30, 2018
Wednesday, March 28, 2018
Save the Date
Last year felt a bit like a marathon, as we dealt with Henry's recurring tonsillitis. About every four weeks, they would flare up and he would be home sick for the better part of a week at a time. Our goal was always to get through the fevers and try to make hay in between. Throughout it all, he always kept his usually, happy demeanor. In the past two months, as Henry has fully recovered from his tonsillectomy, it is becoming clear that this year is going to be a sprint.
Already, we have seen glimpses of what he may be like. A few weekends ago, after a morning playing and running errands, we spent the afternoon at the zoo. Despite about a 30-minute nap, Henry walked all over the zoo and wanted to play in the park before going home to watch a movie. He had a great time, but his parents were wiped out! Even in between all of his colds last year, we hadn't seen so much energy - and we cannot wait to see what he'll be like when he really has energy this summer.
After finally having his cath lab and getting good results, we have scheduled Henry's third heart surgery, the Fontan procedure, on May 24th. Our hope is that we will be home within about two weeks after surgery. We don't know how long he will need to remain out of daycare or away from a lot of people or activities. We will have several appointments to meet with the surgeon and our cardiologist before the surgery, so we'll have more information as it draws closer.
For now, here is a diagram we've posted before:
Henry is currently at figure C, and the Fontan procedure will bring him to D. This will make it so that his blood oxygen levels will go from the low 80s into the 90s, giving him more energy and strength than he's ever had.
Already, we have seen glimpses of what he may be like. A few weekends ago, after a morning playing and running errands, we spent the afternoon at the zoo. Despite about a 30-minute nap, Henry walked all over the zoo and wanted to play in the park before going home to watch a movie. He had a great time, but his parents were wiped out! Even in between all of his colds last year, we hadn't seen so much energy - and we cannot wait to see what he'll be like when he really has energy this summer.
The next eight weeks are going to fly past, with holidays, birthdays, and simply having nice weather again to enjoy. We are nervous, but excited, and ready for this next stage of Henry's life.
Monday, March 26, 2018
Cath lab, take five
After battling several illnesses/tonsillitis since May of last year, and taking most of the summer scheduling, rescheduling, and canceling cath labs, Henry was healthy enough to have them look into his heart. So on Thursday, the doctors were able to look at the narrowing we have been seeing for some time on the Echos, as well as take pressure measurements for the next open heart surgery, the Fontan.
Henry did great. They did not need to do any interventions (ballooning, placing a stent, and/or coil off any collaterals), which allowed for us to go home the same day! It was a very long day, as we had to be up at Children's Mercy by 7:30 in the morning, and we were home after 5 that night.
Dr. Kaine, the cath lab doctor, thought Henry was in a good place, and would be a good candidate for the next open heart surgery. He and Henry's cardiologist, Dr. Goudar, would present Henry on Friday to the rest of the cardiology team to see if everyone agreed with them.
We got a phone call late Friday morning from Dr. Goudar that everything looked good, that the blood work they also did on Thursday looked good (they checked to see how some of Henry's other organs are doing), and that we will be getting a phone call in the next week or two to schedule the Fontan.
We will update everyone once we have a date, and hopefully the posts will become more frequent.
As for the tonsillitis, we will not need to worry about any more flare ups, as we had Henry's tonsils removed back in January. He did great in recovery, and took about 10 days to get close to his normal self. We had him return to daycare for half a day for his first day back, then took the rest of the weekend to get back to the swing of things.
Henry did great. They did not need to do any interventions (ballooning, placing a stent, and/or coil off any collaterals), which allowed for us to go home the same day! It was a very long day, as we had to be up at Children's Mercy by 7:30 in the morning, and we were home after 5 that night.
Dr. Kaine, the cath lab doctor, thought Henry was in a good place, and would be a good candidate for the next open heart surgery. He and Henry's cardiologist, Dr. Goudar, would present Henry on Friday to the rest of the cardiology team to see if everyone agreed with them.
We got a phone call late Friday morning from Dr. Goudar that everything looked good, that the blood work they also did on Thursday looked good (they checked to see how some of Henry's other organs are doing), and that we will be getting a phone call in the next week or two to schedule the Fontan.
We will update everyone once we have a date, and hopefully the posts will become more frequent.
As for the tonsillitis, we will not need to worry about any more flare ups, as we had Henry's tonsils removed back in January. He did great in recovery, and took about 10 days to get close to his normal self. We had him return to daycare for half a day for his first day back, then took the rest of the weekend to get back to the swing of things.
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