So, Izzy has seen 5 doctors this week, with 4 of them this
morning. 4 out of 5 docs said Izzy is doing great! Her GI is
starting her with occupational therapy to learn how to eat solids
since she chokes on everthing besides cheerios, puffs, and small
banana bites. Her endocrine doc said her levels are all good, no
med changes. Her pulmonologist was happy with her. Her sats were
94, but that is expected since her lungs are still healing. We are
going to set up allergy testing with him soon. Izzy's primary care
doc was pleased.
That leaves the cardiologist. I was looking forward to this being a very positive appointment. On July 3, I talked to Dr. Cutler on the phone when Izzy was in the hospital. She indicated her plan was to take Izzy off the lasix and that everything would be routine at the next appointment. First thing this morning, she indicated pretty much the same thing and said she probably wouldn't have to see us for a while. I let myself get excited.
Then the echo. You know when the guy taking the echo indicates the doc will probably want to do more pictures themselves that there is something more going on. Well, as is normal for Izzy's cardiology appointments, something "new" was told to us. Izzy's tricuspid valve has a severe leak. They had tried to fix this during Izzy's last surgery, but the leak has gotten much worse. This probably explains why Izzy is still lasix dependent and why she wakes up swollen some times.
But the tricuspid valve wasn't even the most concerning part. Izzy's right heart is very large. It is working too hard. The right pulmonary artery is still kinked, but the kink is not as small and the left PA is open all of the way and pretty big considering it began as a thread (albeit a bigger thread than the right). Izzy's pressures have gotten very high. This is not expected because of the kinked PA because the left is open. If both were blocked, they'd expect the high pressures. The enlarged right heart is not expected either. So, that leaves the question, what is causing these problems? The answer: WE DON'T KNOW! So, another perfusion study needs to be done when Izzy is healthy. We are holding off to let Izzy heal and to wait until she sees the craneofacial specialist at the end of August because it is likely they will also need to do testing while Izzy is sedated. Hopefully, the perfusion scan and other testing can be done together. Hopefully, this will give us more answers. Dr. Cutler explained they may still do a cath to balloon the kinked PA and possibly stent it, but that doesn't answer why she is having problems right now. Dr. Doshi (pulmonologist) does think the kinked PA may be why these infections hit Izzy so hard.
Hearing this news was not easy on either Dale or I. We've been seeing the problem as lung-related now. I know she has LOTS of different issues, but the heart was becoming less of the center of attention healt-wise. I so wanted it to stay that way. I know we will work through this as we always have, but I just want one cardiology appointment where we don't learn something "new"!!!!
So, once again, I ask you to keep Izzy in your thoughts and to send positive vibes that we can figure out why Izzy's heart and circulatory system is not acting as we would hope. I will keep you all apprised when we know more information. Now that I've gotten this out there, I think I can move on with my day and head to work. Have a good weekend everyone and we will see lots of you at Stacey's wedding reception Saturday. (Please don't hate us if we are cautious with Izzy and don't let everyone hold her.)
Mel
PS
I put up some new photos in the gallery.
That leaves the cardiologist. I was looking forward to this being a very positive appointment. On July 3, I talked to Dr. Cutler on the phone when Izzy was in the hospital. She indicated her plan was to take Izzy off the lasix and that everything would be routine at the next appointment. First thing this morning, she indicated pretty much the same thing and said she probably wouldn't have to see us for a while. I let myself get excited.
Then the echo. You know when the guy taking the echo indicates the doc will probably want to do more pictures themselves that there is something more going on. Well, as is normal for Izzy's cardiology appointments, something "new" was told to us. Izzy's tricuspid valve has a severe leak. They had tried to fix this during Izzy's last surgery, but the leak has gotten much worse. This probably explains why Izzy is still lasix dependent and why she wakes up swollen some times.
But the tricuspid valve wasn't even the most concerning part. Izzy's right heart is very large. It is working too hard. The right pulmonary artery is still kinked, but the kink is not as small and the left PA is open all of the way and pretty big considering it began as a thread (albeit a bigger thread than the right). Izzy's pressures have gotten very high. This is not expected because of the kinked PA because the left is open. If both were blocked, they'd expect the high pressures. The enlarged right heart is not expected either. So, that leaves the question, what is causing these problems? The answer: WE DON'T KNOW! So, another perfusion study needs to be done when Izzy is healthy. We are holding off to let Izzy heal and to wait until she sees the craneofacial specialist at the end of August because it is likely they will also need to do testing while Izzy is sedated. Hopefully, the perfusion scan and other testing can be done together. Hopefully, this will give us more answers. Dr. Cutler explained they may still do a cath to balloon the kinked PA and possibly stent it, but that doesn't answer why she is having problems right now. Dr. Doshi (pulmonologist) does think the kinked PA may be why these infections hit Izzy so hard.
Hearing this news was not easy on either Dale or I. We've been seeing the problem as lung-related now. I know she has LOTS of different issues, but the heart was becoming less of the center of attention healt-wise. I so wanted it to stay that way. I know we will work through this as we always have, but I just want one cardiology appointment where we don't learn something "new"!!!!
So, once again, I ask you to keep Izzy in your thoughts and to send positive vibes that we can figure out why Izzy's heart and circulatory system is not acting as we would hope. I will keep you all apprised when we know more information. Now that I've gotten this out there, I think I can move on with my day and head to work. Have a good weekend everyone and we will see lots of you at Stacey's wedding reception Saturday. (Please don't hate us if we are cautious with Izzy and don't let everyone hold her.)
Mel
PS
I put up some new photos in the gallery.
 |
| Playing with Daddy. July 9, 2009. |
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| Goofy and smilely baby! July 10, 2009. |
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| Standing and having fun with Mommy. July 11, 2009. |
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