Where to begin today? I'll start where I left off last. McKenzie
saw her GI doc and endocrine doc on Tuesday. Both were happy with
her growth (so was her cardiologist, but that is getting a bit
ahead of myself). The GI doc was even satisfied with the amount of
formula Izzy is drinking since she is getting a ton of calories and
nutrition from her solids. But, in an effot to get her to drink
more calories as well since the cardios always want more calories,
he gave us hypo-allergenic toddler formula that comes in vanilla,
chocolate, and tropical, as well as hypo-allergenic juices in three
flavors that have all the calories and nutrients Izzy would need.
So, I tried the vanilla formula first since I didn't want her
hooked on chocolate at the age of one, tropical sounded gross to
me, and she didn't seem to care for apple juice when we tried to
give it to her. She hated vanilla! She drank an ounce and threw the
bottle. (That in itself is not uncommon, she generally throws the
bottle, pushes it away, and generally refuses it when she doesn't
want it.) However, I sat her in my arms and tried to get it in her
mouth and she screamed and cried, so I made regular formula. She
downed the entire bottle. I tried to sneak the vanilla in the
middle. As soon as I did, she cried. We will be holding off on the
vanilla again for at least a little while.
Next, we tried tropical. She didn't hate it the way she hated vanilla, but she didn't drink it either. She didn't drink the normal stuff at that sitting, so I don't know what to think. We have more to go. If we find one she likes, we'll go with it. Other than that, we'll stick to the same old game since the docs are happy with her weight gain and she is not dehydrated. Thanks for all of your advice. We've tried everything and are really at the point of accepting that McKenzie will do only what McKenzie wants---she'll drink just enough so that she doesn't have to get a g-tube or IV and when she drops below that level, we end up in the hospital.
Now, onto today. Izzy and I spent three hours in the Beaumont
Medical Office Building. The first hour was spent getting blood
drawn and trying (not succeeding) to get a urine sample for her
endocrinologist (testing her calcium
levels---hypoparathyroidism---and checking her thyroid function).
And we visited our favorite pharmacy (where everybody knows our
name and loves Miss Izzy). Then, it was off to Dr. Cutler, Izzy's
cardiologist. We had an echo that showed a small VSD, likely caused
by a stitch that didn't hold, causing the patch to gap. That should
close up on its own in about 6 months. Dr. Cutler couldn't find the
open PFO (ASD) and said we should not worry about it and that it is
sometimes left open to act as an area for pressure release if
necessary.
Lastly, we looked at the PAs (pulmonary arteries). Dr. Cutler was the one who requested the perfusion study before Izzy was released from the hospital. She wanted a baseline for the future to see how her PAs are changing. Since the study showed more blood flow to the right than the left and Izzy had just had the collapsed left lung, Dr. Cutler wants a repeat of those studies. The reason being they are not accurate, especailly since the right PA averages about 1/2 the size of the left and there is one place on the right that goes down to 3.5 mm (smaller than her PAs one week after her first surgery when she was two weeks old). She showed me the PAs on the screen. The right one looks like someone is pinching it from the outside. Dr. Cutler indicated that once McKenzie is healed from this surgery, she will need further intervention to widen that PA. She thinks McKenzie can wait 6 months and that it can hopefully be taken care of in the cath lab. I'm crossing my fingers.
Other than that, her homograft conduit is wide open and looking good and there is flow across the valve. Let's keep it that way for a very long time!! McKenzie's lungs are still really wet, she is constantly wheezing, and she still gets kinda swollen, so Dr. Cutler upped her lasix to three times a day, plus added Aldactone (??). It is another diurectic that helps maintain the potassium levels with such a high dosage of lasix (so we got to go back to our favorite pharmacy). Her sats are in the low 90s, which is partially because of the wet lungs and partially because of the VSD and ASD.
We keep moving forward and Izzy is having fun. She is smiling a lot lately and dancing a lot. She doesn't even need music any more. They had her on the table to get a blood pressure and pulse ox, she was just sitting there dancing to herself. I think she was glad to be done with the echo.
As long as she continues this way, she should be able to return
to day care and the rest of her life in the beginning of June. And
I should be able to return to work then too. Speaking of work, my
office sent our family a beautiful arrangement of pink roses and
two helium balloons for the kids yesterday. We appreciate it and
everyone at BSDD and everywhere thinking of us. Thank you
all!
Mel
PS
If someone at BSDD could pass our thanks on to everyone else I would appreciate it. Thanks!
Next, we tried tropical. She didn't hate it the way she hated vanilla, but she didn't drink it either. She didn't drink the normal stuff at that sitting, so I don't know what to think. We have more to go. If we find one she likes, we'll go with it. Other than that, we'll stick to the same old game since the docs are happy with her weight gain and she is not dehydrated. Thanks for all of your advice. We've tried everything and are really at the point of accepting that McKenzie will do only what McKenzie wants---she'll drink just enough so that she doesn't have to get a g-tube or IV and when she drops below that level, we end up in the hospital.
 |
| Look at that toothy grin! May 5, 2009. |
Lastly, we looked at the PAs (pulmonary arteries). Dr. Cutler was the one who requested the perfusion study before Izzy was released from the hospital. She wanted a baseline for the future to see how her PAs are changing. Since the study showed more blood flow to the right than the left and Izzy had just had the collapsed left lung, Dr. Cutler wants a repeat of those studies. The reason being they are not accurate, especailly since the right PA averages about 1/2 the size of the left and there is one place on the right that goes down to 3.5 mm (smaller than her PAs one week after her first surgery when she was two weeks old). She showed me the PAs on the screen. The right one looks like someone is pinching it from the outside. Dr. Cutler indicated that once McKenzie is healed from this surgery, she will need further intervention to widen that PA. She thinks McKenzie can wait 6 months and that it can hopefully be taken care of in the cath lab. I'm crossing my fingers.
Other than that, her homograft conduit is wide open and looking good and there is flow across the valve. Let's keep it that way for a very long time!! McKenzie's lungs are still really wet, she is constantly wheezing, and she still gets kinda swollen, so Dr. Cutler upped her lasix to three times a day, plus added Aldactone (??). It is another diurectic that helps maintain the potassium levels with such a high dosage of lasix (so we got to go back to our favorite pharmacy). Her sats are in the low 90s, which is partially because of the wet lungs and partially because of the VSD and ASD.
We keep moving forward and Izzy is having fun. She is smiling a lot lately and dancing a lot. She doesn't even need music any more. They had her on the table to get a blood pressure and pulse ox, she was just sitting there dancing to herself. I think she was glad to be done with the echo.
 |
| Dressed for a sunny day and doctor's appointments. May 7, 2009. |
Mel
PS
If someone at BSDD could pass our thanks on to everyone else I would appreciate it. Thanks!
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