Tuesday, January 8, 2013
waiting for surgery
As I mentioned in the update about his catheterization in November, it was determined that Xavier should have his next surgery, the Fontan, sooner rather than later. It was actually scheduled for last Friday, but due to a case of the sniffles, it was decided that it should be postponed to make sure Xavier is healthy. Best decision ever. Xavier got much worse (and so did I). We are all once again on the mend and Xavier seems to be doing much better. His surgery is currently scheduled for this upcoming Friday (January 11). Hopefully we can keep all illness at bay until he has fully recovered from surgery.
catheterization
I am so bad at updating this blog...
Anyway, Xavier had his cardiac catheterization in November. Before I talk more about the procedure and results, I have to take a minute to talk about how incredibly brave Xavier was! He did fantastic! He never once complained that he wasn't able to eat or drink anything before the procedure, and while in pre-op he allowed the nurse to weigh and measure him, take his blood pressure and temperature, and check his O2 saturation without any fussing at all! He let us put on his hospital gown and watched cartoons in the pre-op room until it was time for the catheterization.
He was in such a good mood, laughing and playing the entire time....well, at least until we got inside the cath lab. He's never been in there before and you could see his hesitation as soon as we entered. We tried to make it fun for him, but as soon as they asked him to lay down, he panicked a bit and clung to me tightly. It was so sad to have him be held down as he screamed so they could start the sedation process. It's those moments when I feel the most helpless. All I want to do is calm his fears, but I can't stop or take away the thing that is scaring him because they are necessary for his care. How do you help a two year old understand that?
Matt and I met with the doctor briefly and then began our long wait. It was really only three hours before they let us know the procedure was finished, but it seemed to take longer than that. The longest part of the wait seemed to be the time after the procedure was done and we were able to go in and see him. During that time we met with the cardiologist who performed the cath and learned about the findings.
It turns out that while we were under the impression that there was one collateral that had formed, in reality there were quite a few. So many in fact that they were not comfortable closing all of them during this procedure due to the time it would take and the stress on Xavier's body. In addition to the collaterals, they discovered that he has developed pulmonary arteriovenous malformations (PAVMs) in his lungs. This isn't good news as it means his blood is not picking up as much oxygen as it goes through the lungs. PAVMs are a little difficult to find information on as they are very rare in the general population and are typically genetic. However, they are more common in those who have undergone a Glenn or Kawashima procedure, and even more so in those who have undergone one of those procedures, has Heterotaxy and an interrupted IVC (as in Xavier's case). We knew after his Kawashima it was a possibility he would develop them, but I don't think we were prepared for it.
What do the PAVMs mean for Xavier? Well, to be honest I don't really know what effects they will have in the long run, but they do mean that his Fontan surgery will be happening sooner than later so that PAVMs do not continue to develop, making his health worse. There is some evidence that the PAVMs will shrink or close following the Fontan surgery so we are hoping that is true for Xavier and that no further interventions will be needed. We were already looking at spring for his next surgery, but the cardiologist who did the cath said it was not a good idea to wait that long (more about this in a later post).
I'm always relieved when I'm able to go in and see Xavier after a procedure. I just wish they didn't make us wait until after he wakes up...he has to be so scared waking up in an unfamiliar place surrounded by unfamiliar faces! I think it is safe to say that Xavier was not as happy. He is a firm believer that there should never be anything attached to his body. Ever. This includes, but is not limited to leads, IVs, pulse ox sensors, blood pressure cuffs, and tape (of any kind, including bandaids). I can't say that I blame him for that.
Xavier did get a little sick from the anaesthesia and never did get to eat his three popsicles. He ate one, drank some juice, and then lost it all. Poor baby. He was still so out of it from the pain meds that he looked at me and asked "Why you pour water on me?" Oh my dear, sweet, innocent boy...I love you.
We had been prepared to stay in the hospital overnight, but were pleasantly surprised when they started drawing up discharge paperwork while in the recovery room. Yay!
Anyway, Xavier had his cardiac catheterization in November. Before I talk more about the procedure and results, I have to take a minute to talk about how incredibly brave Xavier was! He did fantastic! He never once complained that he wasn't able to eat or drink anything before the procedure, and while in pre-op he allowed the nurse to weigh and measure him, take his blood pressure and temperature, and check his O2 saturation without any fussing at all! He let us put on his hospital gown and watched cartoons in the pre-op room until it was time for the catheterization.
Xavier showing us what he thinks about
being in the hospital.
Always trying to take off what the nurses put on.
Thankfully it's just his ID bracelet here.
When the nurse came to get us, Xavier told us he wanted to walk and shuffled along in his hospital gown through the hallways to the cath lab...pausing to point out all the child friendly wall art along the way. At one point the nurse told him that he would be able to eat a popsicle when he woke up from the sedation, and Xavier matter-of-factly declared that he would be eating THREE popsicles. haha!
He was in such a good mood, laughing and playing the entire time....well, at least until we got inside the cath lab. He's never been in there before and you could see his hesitation as soon as we entered. We tried to make it fun for him, but as soon as they asked him to lay down, he panicked a bit and clung to me tightly. It was so sad to have him be held down as he screamed so they could start the sedation process. It's those moments when I feel the most helpless. All I want to do is calm his fears, but I can't stop or take away the thing that is scaring him because they are necessary for his care. How do you help a two year old understand that?
Matt and I met with the doctor briefly and then began our long wait. It was really only three hours before they let us know the procedure was finished, but it seemed to take longer than that. The longest part of the wait seemed to be the time after the procedure was done and we were able to go in and see him. During that time we met with the cardiologist who performed the cath and learned about the findings.
It turns out that while we were under the impression that there was one collateral that had formed, in reality there were quite a few. So many in fact that they were not comfortable closing all of them during this procedure due to the time it would take and the stress on Xavier's body. In addition to the collaterals, they discovered that he has developed pulmonary arteriovenous malformations (PAVMs) in his lungs. This isn't good news as it means his blood is not picking up as much oxygen as it goes through the lungs. PAVMs are a little difficult to find information on as they are very rare in the general population and are typically genetic. However, they are more common in those who have undergone a Glenn or Kawashima procedure, and even more so in those who have undergone one of those procedures, has Heterotaxy and an interrupted IVC (as in Xavier's case). We knew after his Kawashima it was a possibility he would develop them, but I don't think we were prepared for it.
What do the PAVMs mean for Xavier? Well, to be honest I don't really know what effects they will have in the long run, but they do mean that his Fontan surgery will be happening sooner than later so that PAVMs do not continue to develop, making his health worse. There is some evidence that the PAVMs will shrink or close following the Fontan surgery so we are hoping that is true for Xavier and that no further interventions will be needed. We were already looking at spring for his next surgery, but the cardiologist who did the cath said it was not a good idea to wait that long (more about this in a later post).
I'm always relieved when I'm able to go in and see Xavier after a procedure. I just wish they didn't make us wait until after he wakes up...he has to be so scared waking up in an unfamiliar place surrounded by unfamiliar faces! I think it is safe to say that Xavier was not as happy. He is a firm believer that there should never be anything attached to his body. Ever. This includes, but is not limited to leads, IVs, pulse ox sensors, blood pressure cuffs, and tape (of any kind, including bandaids). I can't say that I blame him for that.
Xavier did get a little sick from the anaesthesia and never did get to eat his three popsicles. He ate one, drank some juice, and then lost it all. Poor baby. He was still so out of it from the pain meds that he looked at me and asked "Why you pour water on me?" Oh my dear, sweet, innocent boy...I love you.
We had been prepared to stay in the hospital overnight, but were pleasantly surprised when they started drawing up discharge paperwork while in the recovery room. Yay!
Subscribe to:
Posts (Atom)