Well, I've definitely noticed a difference in Miles since we've lessened his blood pressure medication. He had been taking the drug Propranolol three times a day. While he was taking it, he seemed to tire really easily. He didn't seem as happy as he usually was. I described him as "slumpy". He didn't seem as interested in playing. Most of the day, he just wanted to lay in my lap and watch tv or look at books. He took quite a few naps, and even when he wasn't napping, he might as well have been.
Right now, we're down to one dose a day. He's all over the place! Kind of driving me crazy actually....in a good way though. He's back to playing and getting into everything. One of his new favorite games is to bring me a diaper to change him. As soon as I get the diaper down ready to change him, he runs off as fast as he can. I grab a leg and pull him back. He acts like he's going to cooperate until I get his pants off. Then he's off again. Diaper changing is on the verge of requiring a second person. Luckily, this is typically a game that only happens with the wet diapers. Hopefully, it stays that way. Other favorite games include emptying all of the bottom drawers in the house and unfolding laundry as I fold it. And a bit of advice, if you are ever using the bathroom at my house, you will now find the toilet paper on the shelf behind the toilet. We can't keep it on the roll anymore because Miles loves to decorate.
In other Miles news, he has become quite the sharer. Be wary of any food that Miles offers you though. It has most likely already spent time in his mouth. He is always kind enough to test it out before giving it to others. He's very thoughtful that way. Don't tell Ben, but the other day we got a bag of those delicious pink and white frosted animal cookies. I came in the room and Miles had the bag. He was picking each cookie up, placing it in his mouth, and then carefully putting it back in the bag. It was pretty funny, so I was naughty and just let him finish. I left the bag on the bed though, and Ben ate them all. Mmmmm.... That's good eating.
Friday, July 31, 2009
Thursday, July 30, 2009
Heart Disease
I'm going to try to make up for lost time and set a foundation for what I'm sure will be a great portion of my posts.
Miles has always seemed to be very healthy. Sure he's had his share of colds, but who hasn't? Miles has always been very active, and in my opinion, he's very advanced. We've kept on top of his well-child visits like good parents should. At his 9 month visit, Dr. Ditty asked if anyone had ever told me that Miles had a heart murmur. No. He explained that it was very normal for children this age as they were still developing, and it was most likely nothing. To be safe, he asked a few questions. "Has he had trouble eating?" "Does he tire easily?" At this time, Miles did have some strange sleep habits. Sometimes, in the middle of playing with his toys, he would just kind of tip over and fall asleep. He wasn't passing out, just falling asleep unexpectedly. After this little revelation, Dr. Ditty recommended that he have an echocardiogram.....just to be safe.
It was quite a while before we were able to get in to Primary Children's to see a cardiologist. On June 29th, my mother and I took Miles in to see Dr. Puchalski (because it was Ben's first day out of training at his new job). After a quick check-up, Dr. Puchalski turned to me and said, "Well, it looks like your son has some pretty severe heart disease, and is going to have to have heart surgery." It was definitely a shock, and the doctor could tell. He apologized for the bad news and explained what he had heard from Miles' heart. He had a coarctation of the aorta, a constriction of the aorta, preventing blood flow to the lower half of his body. He told us that if you have to have heart disease that required surgery, this was the one to have. While the surgery is still technically "open heart", it is relatively routine. They do about two a day at PCMC, and has virtually no risk associated with it. Before leaving, Dr. Puchalski requested that Miles and I come back the next day with Ben, so we could all talk. Miles also still needed his echo to see if there were any further issues.
Calling Ben was the biggest challenge. I can hold my composure as long as I don't have to talk. As soon as I open my mouth it's all over. I tried calling, and that didn't work out too well, so my mom had to explain it to him.
On the 30th, we went in for the echo. Including sedation, this typically takes about a half hour. I knew that something was wrong when an hour had passed. We sat in the room with Miles while the echo was being done. I had another clue that there might be more problems when the person reading the monitor kept bringing others in to look at it. They would point at some blurry image and whisper then point some more. Not very reassuring.
Next, we were taken into a room designed to look like a family room, to make us feel comfortable, I guess. Dr. Puchalski was in there with a woman he introduced as our social worker. Super. Something that requires a social worker. The good doctor explained that Miles has several problems with the left side of his heart. His mitral valve was allowing blood flow in both directions. His tricuspid valve was only bicuspid, and there was the coarctation, among other things. He said that four or more issues with the left side of the heart like this was called Shone's Syndrome. Currently, the problems (other than the coarctation) are too insignificant to operate on. Dr. Puchalski warned us that typically after the coarc surgery, the other problems intensify, requiring a second and maybe third surgery within the year. These other surgeries would not be as "pleasant" as the coarc surgery. They would have to open his chest cavity, and it wouldn't be quite so routine.
Right now we are just trying to get the coarc surgery taken care of. It was scheduled for 7/27. Unfortunately, today is 7/30, and we have not had the surgery yet. Last Wednesday, Miles got sick and had to be hospitalized until Saturday. The diagnosis was asthma exacerbation. Apparently, he had a minor virus that caused some breathing difficulty. The blood pressure medicine that he was taking in preparation for his surgery made his breathing problems much worse, so we had to ween him off of it. We were told that because of this we would have to wait 4 to 6 weeks for the surgery. Too long! After a discussion with a cardiologist, we got it moved up to less than 2 weeks. His surgery is scheduled for August 10th.
I know that that seemed long, but that was the condensed version. We'll keep working on this as we continue with this roller coaster.
Miles has always seemed to be very healthy. Sure he's had his share of colds, but who hasn't? Miles has always been very active, and in my opinion, he's very advanced. We've kept on top of his well-child visits like good parents should. At his 9 month visit, Dr. Ditty asked if anyone had ever told me that Miles had a heart murmur. No. He explained that it was very normal for children this age as they were still developing, and it was most likely nothing. To be safe, he asked a few questions. "Has he had trouble eating?" "Does he tire easily?" At this time, Miles did have some strange sleep habits. Sometimes, in the middle of playing with his toys, he would just kind of tip over and fall asleep. He wasn't passing out, just falling asleep unexpectedly. After this little revelation, Dr. Ditty recommended that he have an echocardiogram.....just to be safe.
It was quite a while before we were able to get in to Primary Children's to see a cardiologist. On June 29th, my mother and I took Miles in to see Dr. Puchalski (because it was Ben's first day out of training at his new job). After a quick check-up, Dr. Puchalski turned to me and said, "Well, it looks like your son has some pretty severe heart disease, and is going to have to have heart surgery." It was definitely a shock, and the doctor could tell. He apologized for the bad news and explained what he had heard from Miles' heart. He had a coarctation of the aorta, a constriction of the aorta, preventing blood flow to the lower half of his body. He told us that if you have to have heart disease that required surgery, this was the one to have. While the surgery is still technically "open heart", it is relatively routine. They do about two a day at PCMC, and has virtually no risk associated with it. Before leaving, Dr. Puchalski requested that Miles and I come back the next day with Ben, so we could all talk. Miles also still needed his echo to see if there were any further issues.
Calling Ben was the biggest challenge. I can hold my composure as long as I don't have to talk. As soon as I open my mouth it's all over. I tried calling, and that didn't work out too well, so my mom had to explain it to him.
On the 30th, we went in for the echo. Including sedation, this typically takes about a half hour. I knew that something was wrong when an hour had passed. We sat in the room with Miles while the echo was being done. I had another clue that there might be more problems when the person reading the monitor kept bringing others in to look at it. They would point at some blurry image and whisper then point some more. Not very reassuring.
Next, we were taken into a room designed to look like a family room, to make us feel comfortable, I guess. Dr. Puchalski was in there with a woman he introduced as our social worker. Super. Something that requires a social worker. The good doctor explained that Miles has several problems with the left side of his heart. His mitral valve was allowing blood flow in both directions. His tricuspid valve was only bicuspid, and there was the coarctation, among other things. He said that four or more issues with the left side of the heart like this was called Shone's Syndrome. Currently, the problems (other than the coarctation) are too insignificant to operate on. Dr. Puchalski warned us that typically after the coarc surgery, the other problems intensify, requiring a second and maybe third surgery within the year. These other surgeries would not be as "pleasant" as the coarc surgery. They would have to open his chest cavity, and it wouldn't be quite so routine.
Right now we are just trying to get the coarc surgery taken care of. It was scheduled for 7/27. Unfortunately, today is 7/30, and we have not had the surgery yet. Last Wednesday, Miles got sick and had to be hospitalized until Saturday. The diagnosis was asthma exacerbation. Apparently, he had a minor virus that caused some breathing difficulty. The blood pressure medicine that he was taking in preparation for his surgery made his breathing problems much worse, so we had to ween him off of it. We were told that because of this we would have to wait 4 to 6 weeks for the surgery. Too long! After a discussion with a cardiologist, we got it moved up to less than 2 weeks. His surgery is scheduled for August 10th.
I know that that seemed long, but that was the condensed version. We'll keep working on this as we continue with this roller coaster.
Testing Out Blogging
Well, I've decided to try to join the rest of the world and attempt a blog. I'll be honest and admit that I have absolutely no idea what I'm doing, so this blog will probably suck rocks for a little bit while I'm still getting used to it. I am certainly not very tech friendly. In fact, Kevin, I need your help trying to make my printer work.
Anyhow, I've had a few requests and I did think that this would be a good way to keep people who are interested up on the family, particulary on my little baby. So, here is the launch of the Jackson family blog. Enjoy!
Anyhow, I've had a few requests and I did think that this would be a good way to keep people who are interested up on the family, particulary on my little baby. So, here is the launch of the Jackson family blog. Enjoy!
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