Let's call this post a continuation from Monday since ten or
fifteen minutes after I posted on Monday, Dr. Cutler called me
back. To get you in Monday's frame of mind, here is a picture of
Izzy coloring in Dr. Cutler's new office.
Dr. Cutler called me back and changed everything Monday
afternoon after she powwowed with the U of M Mott interventional
cardiologist (cath doc--Dr. Armstrong). The two of them pondered
Izzy and her lack of being a paper doll that would allow us to fix
things without having to snip coronary arteries (never good; always
BAD). Dr. Armstrong indicated that it may be possible to close off
Izzy's natural pulmonary valve during a catheterization, but that
neither doc knows if this is the right time to plan for such a
procedure.
Since Izzy hasn't had a cath in over a year and hasn't had an MRI since July 2010, the docs are only going off of echocardiograms to know what is going on with Izzy's heart. Unfortunately, that is not good enough. Only estimates of heart size, heart function, pressures, and all the important measures of the heart for determining the actual need for intervention (at least for Izzy) cannot be determined by echo alone. So, Izzy will be having a cardiac MRI early in the morning on January 4, 2013.
In order to have this MRI, Izzy will need to be sedated. During her last MRI at Lucile Packard Children's Hospital (Stanford), Izzy had to be intubated (on a ventilator). We haven't been told this will be necessary for this MRI and hopefully it won't be needed because Izzy is bigger and not as sick as she was then. (That MRI was done prior to Izzy's last open heart surgery.) I hate Izzy having to be sedating for anything. I hate the vent even more.
With this MRI, we will be able to determine Izzy's heart size compared to her size body to see how much bigger it is than it should be. This will also act as a baseline for the future so that when she grows, we will know if her heart is getting bigger quicker than the rest of her body (which would be very bad). The MRI will also help see how bad Izzy's regurgitation is with her tricuspid valve rather than just the "moderate" leakage Dr. Cutler can note in an echo (quantitative answers rather than qualitative). This MRI will also help map things out and allow Dr. Armstrong to see all of the structures in Izzy's heart and circulatory system so that she can better plan Izzy's next catheterization, where she hopes to be able to go in through the neck and groin to work on Izzy's stent that is oddly placed. The MRI will let us know if that is possible and whether Izzy's pulmonary valve can be closed and whatever else may be needed.
Izzy also completed her 24-hour holter monitor on Thursday morning. We don't have the results back yet, but expect to hear from Dr. Cutler tomorrow to see if Izzy is having any rhythm issues. Dr. Cutler did mention last Monday that Izzy seemed to be throwing some PVCs (premature ventricular contractions). If it is bad enough (PVCs are not uncommon and don't necessarily need treatment), I expect Izzy will start some treatment for that soon. Dr. Cutler had mentioned possibly starting Izzy back on Digoxin, which she has been on before.
Finally, Dr. Cutler made us test Izzy to see whether her swelling and lethargy is due to her immune system or something else. Dr. Cutler's working theory was that Izzy looks better on Monday mornings because she gets her immunoglobulin infusions on Sunday, so her body is better because of that. Dale and I believe that she looks better on Monday mornings because she gets lots of rest over the weekend.
Instead of infusing on Sunday morning this week, we did it Friday evening. Then, Izzy was supposed to play a lot on Saturday to see how she was today. I decided the best way to truly test Izzy was giving her lots of excitement. So, we went to Santa first thing Saturday morning. I bet you feel the excitement and anticipation through these photos!
This kids had a wonderful time seeing Santa (even though Phin was petrified to begin with and wouldn't go anywhere near Santa).
Unfortunately, Izzy was very tired through the whole thing and not very cooperative after the fact. When she is not feeling well, she doesn't behave well. Here is a picture of her getting upset with us because we wouldn't ride the escalator again (we had already done so 6 times I believe at that point).
We continued with Dr. Cutler's experiment all day Saturday, but it was a fail. Izzy looked even worse this morning than yesterday. As Dale and I expected, her sickliness is not related to her immunoglobulin level, but her activity level. (I mean, her immunoglobulin level probably adds to it, but it is NOT the only answer as Dr. Cutler had suspected/hoped.) That being said, the experiment didn't stop Izzy and Phin from playing Doc McKenzie this morning (theme song is sund to Doc McStuffins). Here they are in Doc McKenzie's clinic taking care of a sick patient (Phin is the assistant):
So, that is where we are. Izzy will be undergoing an MRI right after the new year to determine if further intervention is needed and when.
Mel
Since Izzy hasn't had a cath in over a year and hasn't had an MRI since July 2010, the docs are only going off of echocardiograms to know what is going on with Izzy's heart. Unfortunately, that is not good enough. Only estimates of heart size, heart function, pressures, and all the important measures of the heart for determining the actual need for intervention (at least for Izzy) cannot be determined by echo alone. So, Izzy will be having a cardiac MRI early in the morning on January 4, 2013.
In order to have this MRI, Izzy will need to be sedated. During her last MRI at Lucile Packard Children's Hospital (Stanford), Izzy had to be intubated (on a ventilator). We haven't been told this will be necessary for this MRI and hopefully it won't be needed because Izzy is bigger and not as sick as she was then. (That MRI was done prior to Izzy's last open heart surgery.) I hate Izzy having to be sedating for anything. I hate the vent even more.
With this MRI, we will be able to determine Izzy's heart size compared to her size body to see how much bigger it is than it should be. This will also act as a baseline for the future so that when she grows, we will know if her heart is getting bigger quicker than the rest of her body (which would be very bad). The MRI will also help see how bad Izzy's regurgitation is with her tricuspid valve rather than just the "moderate" leakage Dr. Cutler can note in an echo (quantitative answers rather than qualitative). This MRI will also help map things out and allow Dr. Armstrong to see all of the structures in Izzy's heart and circulatory system so that she can better plan Izzy's next catheterization, where she hopes to be able to go in through the neck and groin to work on Izzy's stent that is oddly placed. The MRI will let us know if that is possible and whether Izzy's pulmonary valve can be closed and whatever else may be needed.
Izzy also completed her 24-hour holter monitor on Thursday morning. We don't have the results back yet, but expect to hear from Dr. Cutler tomorrow to see if Izzy is having any rhythm issues. Dr. Cutler did mention last Monday that Izzy seemed to be throwing some PVCs (premature ventricular contractions). If it is bad enough (PVCs are not uncommon and don't necessarily need treatment), I expect Izzy will start some treatment for that soon. Dr. Cutler had mentioned possibly starting Izzy back on Digoxin, which she has been on before.
Finally, Dr. Cutler made us test Izzy to see whether her swelling and lethargy is due to her immune system or something else. Dr. Cutler's working theory was that Izzy looks better on Monday mornings because she gets her immunoglobulin infusions on Sunday, so her body is better because of that. Dale and I believe that she looks better on Monday mornings because she gets lots of rest over the weekend.
Instead of infusing on Sunday morning this week, we did it Friday evening. Then, Izzy was supposed to play a lot on Saturday to see how she was today. I decided the best way to truly test Izzy was giving her lots of excitement. So, we went to Santa first thing Saturday morning. I bet you feel the excitement and anticipation through these photos!
This kids had a wonderful time seeing Santa (even though Phin was petrified to begin with and wouldn't go anywhere near Santa).
Unfortunately, Izzy was very tired through the whole thing and not very cooperative after the fact. When she is not feeling well, she doesn't behave well. Here is a picture of her getting upset with us because we wouldn't ride the escalator again (we had already done so 6 times I believe at that point).
We continued with Dr. Cutler's experiment all day Saturday, but it was a fail. Izzy looked even worse this morning than yesterday. As Dale and I expected, her sickliness is not related to her immunoglobulin level, but her activity level. (I mean, her immunoglobulin level probably adds to it, but it is NOT the only answer as Dr. Cutler had suspected/hoped.) That being said, the experiment didn't stop Izzy and Phin from playing Doc McKenzie this morning (theme song is sund to Doc McStuffins). Here they are in Doc McKenzie's clinic taking care of a sick patient (Phin is the assistant):
So, that is where we are. Izzy will be undergoing an MRI right after the new year to determine if further intervention is needed and when.
Mel
12 Message(s) from Carepages
No comments:
Post a Comment