As I said in my last post, Izzy has continued her slow decline
we've been noticing since this time last year. She's stopped
growing, lost weight, continues to be swollen, has dark circles
around her eyes, and just looks sick. She is not coughing at night
currently, but she is turning blue frequently and for longer
periods of time. And now, Izzy has started to complain of lethargy.
Each morning, she tells me "Mommy, I'm so tired. I slept last night
and I take a nap, but I'm tired." Of course, she starts playing and
forgets she's tired, but her eyes tell a different story. Dale and
I have both noticed that she is tiring more easily and her
endurance seems to be decreasing. This video is an example:
Izzy loves to make videos because she loves to watch herself
perform. (My little diva.) As you saw if you watched, Izzy sang
"Hush Little Baby" to her baby, Mickey.** I don't know if you
noticed the pauses she had to take to catch her breath, but I did.
And when she ran to the other side of the camera to watch herself,
she was huffing and puffing to catch her breath simply because she
had sung a song. That is not normal for my Izzy, who sings
constantly.
Harder still is that Izzy is noticing and complaining about not being able to play and run a lot lately. It is heart breaking to watch her tire in the middle of doing things she could do with ease even a couple of months ago. I tried to convince myself that I was just seeing things, but Dale noticed too.
So, at the end of last week, I contacted Izzy's cardiologist about our worries. I tried to give her an out and say I was being an overprotective mom, but Dr. Cutler responded that she always worries about Izzy. That jarred me. I know that Izzy's case is very complicated and that we've been told over and over again that they don't know what to do, but to know that it worries her doctor shook me. That statement has been sitting resident in my head for days now.
After ruling out the obvious, Dr. Cutler ordered a full round of blood work on Izzy in hopes that her iron was low and causing the lethargy. That was done last night. Everything came back good. Izzy's hemoglobin (iron) was even higher than two months ago (a good thing). The only thing not quite right was a BUN of 24 (and yes, Nicole, I put the specific number in for you). That number is slightly above normal and indicates that Izzy is a little dry according to Dr. Cutler. I've never been told Izzy's BUN level before, so I can't compare, but apparently it is elevated. I'm not terribly concerned about the number because I know that is a symptom of congestive heart failure (which we know Izzy has) and I know that number becomes a real concern when it is much higher, not 24.
Izzy will go in for a visit with Dr. Cutler on Monday morning, one month early, to look at her heart and check for A-fib, worsening tricuspid valve regurgitation, decreased heart function, increased pulmonary hypertension, or anything else. Anything is possible. Because of the number of open heart surgeries Izzy has had, she could easily be having rhythm problems. Her messed up tricuspid valve is always a problem. And those pulmonary arteries . . .
The most likely culprit is the pulmonary arteries and the pressure inside them from being so darn small and misplaced and impossible to fix (at least with current medical practice). If this is simply a symptom of Izzy's pulmonary pressures continuing to increase because her body is trying to pump more blood through those tiny arteries that don't grow, there is nothing to do be done except help relieve the symptoms that can be helped and live with everything else.
Of course, I'm ahead of myself. We don't know what the answer is going to be. Dr. Cutler and I joked about how nice it would be if we were simply looking for some exotic disease Izzy had because we could finally figure it out and give her the magic pill. But, we know what she has and we've searched for the pill. They don't make one for her.
Maybe we'll be lucky on Monday and it will all be an obvious thing like rhythm issues that can be addressed easily with a known drug. No matter what, right now my brain in on overdrive and I need to get all of this out so I can do other things before Monday. I need to put these thoughts aside. And I need my girl to be all right.
Mel
**If you are wondering why, in the video, Izzy said Mickey is not a baby, but her baby, it is because that is what I tell her and Phineas. They are no longer babies, but they will always be my babies. And Mickey is Izzy's baby. She will tell you all kinds of stories about him. He's had a hard life--born with a broken heart, he's had heart surgery, and spent a lot of time in the hospital and almost died, but he is good now and happy.
Harder still is that Izzy is noticing and complaining about not being able to play and run a lot lately. It is heart breaking to watch her tire in the middle of doing things she could do with ease even a couple of months ago. I tried to convince myself that I was just seeing things, but Dale noticed too.
So, at the end of last week, I contacted Izzy's cardiologist about our worries. I tried to give her an out and say I was being an overprotective mom, but Dr. Cutler responded that she always worries about Izzy. That jarred me. I know that Izzy's case is very complicated and that we've been told over and over again that they don't know what to do, but to know that it worries her doctor shook me. That statement has been sitting resident in my head for days now.
After ruling out the obvious, Dr. Cutler ordered a full round of blood work on Izzy in hopes that her iron was low and causing the lethargy. That was done last night. Everything came back good. Izzy's hemoglobin (iron) was even higher than two months ago (a good thing). The only thing not quite right was a BUN of 24 (and yes, Nicole, I put the specific number in for you). That number is slightly above normal and indicates that Izzy is a little dry according to Dr. Cutler. I've never been told Izzy's BUN level before, so I can't compare, but apparently it is elevated. I'm not terribly concerned about the number because I know that is a symptom of congestive heart failure (which we know Izzy has) and I know that number becomes a real concern when it is much higher, not 24.
Izzy will go in for a visit with Dr. Cutler on Monday morning, one month early, to look at her heart and check for A-fib, worsening tricuspid valve regurgitation, decreased heart function, increased pulmonary hypertension, or anything else. Anything is possible. Because of the number of open heart surgeries Izzy has had, she could easily be having rhythm problems. Her messed up tricuspid valve is always a problem. And those pulmonary arteries . . .
The most likely culprit is the pulmonary arteries and the pressure inside them from being so darn small and misplaced and impossible to fix (at least with current medical practice). If this is simply a symptom of Izzy's pulmonary pressures continuing to increase because her body is trying to pump more blood through those tiny arteries that don't grow, there is nothing to do be done except help relieve the symptoms that can be helped and live with everything else.
Of course, I'm ahead of myself. We don't know what the answer is going to be. Dr. Cutler and I joked about how nice it would be if we were simply looking for some exotic disease Izzy had because we could finally figure it out and give her the magic pill. But, we know what she has and we've searched for the pill. They don't make one for her.
Maybe we'll be lucky on Monday and it will all be an obvious thing like rhythm issues that can be addressed easily with a known drug. No matter what, right now my brain in on overdrive and I need to get all of this out so I can do other things before Monday. I need to put these thoughts aside. And I need my girl to be all right.
Mel
**If you are wondering why, in the video, Izzy said Mickey is not a baby, but her baby, it is because that is what I tell her and Phineas. They are no longer babies, but they will always be my babies. And Mickey is Izzy's baby. She will tell you all kinds of stories about him. He's had a hard life--born with a broken heart, he's had heart surgery, and spent a lot of time in the hospital and almost died, but he is good now and happy.
21 Message(s) from Carepages
No comments:
Post a Comment