We just returned from an appointment with Izzy's
immunologist/pulmonologist, Dr. Doshi. We love Dr. Doshi. We met
him in the Beaumont ICU when Izzy had the adenovirus last November.
We later found out he works in the same office with the rest of
Izzy's specialists, which is wonderful, especially on days like
today where Dr. Cutler (cardiologist) wanted a quick peek at Izzy
too.
Dr. Doshi first went through the repeat testing of Izzy's immune system that we did in March. It showed better numbers from last June, but Izzy's T-cell count is still very low. That is expected because she has DiGeorge's Syndrome (chromosome 22q11.2 deletion/velo cardio facial syndrome). Luckily, she is high enough not to go back on the preventative antibiotic, but just barely. Izzy's weakened immune system has obvious problems, i.e., making her more susceptible to diseases. It also means no live vaccines. This is very scary to me because it means Izzy can easily get these diseases, such as measels. It wouldn't be a problem if vaccines were given to all of the people who can have them. But because so many parents these days choose not to vaccinate their healthy children, these diseases are on an upswing and children like Izzy are the ones who pay the price because they can't have vaccines and don't have the immune system to fight them. So, please forgive me if I'm hyper-sensitive about sick people getting near Izzy. Not only does she have her heart issues (and lots of other things), but she has a weak immune system and can't have all vaccines.
For the pulmonology portion of the visit, Dr. Doshi was very concerned, as was Dr. Cutler. Izzy's lungs are full of gunk and her O2 sats were their hightest at 93 (lower than last week's 96 to 99). Dr. Doshi cannot tell if Izzy's lungs are full because of atelectasis from too much blood/fluid in the lungs or going to the lungs or because of flem and mucus from her cold/respiratory infection. We are going to do a repeat chest x-ray tomorrow to see what is what and to see if there has been any change in how full her lungs are and whether the collapsed portion at the bottom of the left lung has opened any. She is not doing well on the breathing front, but she is not wheezing. That is good. She has had the cold for a couple of weeks now and been on antibotics for 9 days, she should be doing better, but she is not that great. Because of the hard breathing, she is staying on the third dose of lasix for another week. We will see Dr. Cutler again on Monday. We will see Dr. Doshi again the following week.
Even worse than the hard time breathing, is that Izzy has stopped eating. Not just milk, but solids as well. We think the antiboitic is making her stomach ill and she is vomiting flem, so she doesn't want to take anything. I managed to get her to take 1.5 ounces of milk this morning 2.5 mLs at a time using a syringe (there are 30 mLs in an ounce) and then another 1 ounce mixed with cereal and applesauce. That took us a good 1.5 hours and a lot of fighting, with Mama holding Izzy's arms down and tricking Izzy to open her mouth. We couldn't do any more since I ran out of tricks to get her to open up. Luckily, she hasn't started to look dehydrated yet, but she has lost 11 ounces since Wednesday. That is a lot (about 4% of her body weight in 6 days)!!! Dr. Cutler kept asking Izzy if she remembers the n-g tube. Izzy laughed, but I'm sure she doesn't remember. I do though. It is not terrible (except on her GI system), but I'd rather not have to go there again, especially since it is probably just related to this respiratory infection.
I wanted to end this post upbeat, but I can't. We were supposed to be at the point this week where Izzy was awesome. While we can pick her up under her arms without causing pain, she can take a real bath, and she is trying to stand up, Izzy's lungs are worrying me a lot. Dr. Cutler thinks it is possible that the left lung is getting too much blood flow because of the fix plus the collaterals already in existence (which I believe is why the right lung is okay despite the 3mm pinch in the PA). This is not a "problem" per se, but an issue, especially at times like now when she won't drink. We are trying to hit that delicate balance between keeping Izzy's lungs dry and keeping her hydrated. I just hope we can get to that point by next Monday when I go back to work. Keep your fingers crossed.
Mel
Dr. Doshi first went through the repeat testing of Izzy's immune system that we did in March. It showed better numbers from last June, but Izzy's T-cell count is still very low. That is expected because she has DiGeorge's Syndrome (chromosome 22q11.2 deletion/velo cardio facial syndrome). Luckily, she is high enough not to go back on the preventative antibiotic, but just barely. Izzy's weakened immune system has obvious problems, i.e., making her more susceptible to diseases. It also means no live vaccines. This is very scary to me because it means Izzy can easily get these diseases, such as measels. It wouldn't be a problem if vaccines were given to all of the people who can have them. But because so many parents these days choose not to vaccinate their healthy children, these diseases are on an upswing and children like Izzy are the ones who pay the price because they can't have vaccines and don't have the immune system to fight them. So, please forgive me if I'm hyper-sensitive about sick people getting near Izzy. Not only does she have her heart issues (and lots of other things), but she has a weak immune system and can't have all vaccines.
For the pulmonology portion of the visit, Dr. Doshi was very concerned, as was Dr. Cutler. Izzy's lungs are full of gunk and her O2 sats were their hightest at 93 (lower than last week's 96 to 99). Dr. Doshi cannot tell if Izzy's lungs are full because of atelectasis from too much blood/fluid in the lungs or going to the lungs or because of flem and mucus from her cold/respiratory infection. We are going to do a repeat chest x-ray tomorrow to see what is what and to see if there has been any change in how full her lungs are and whether the collapsed portion at the bottom of the left lung has opened any. She is not doing well on the breathing front, but she is not wheezing. That is good. She has had the cold for a couple of weeks now and been on antibotics for 9 days, she should be doing better, but she is not that great. Because of the hard breathing, she is staying on the third dose of lasix for another week. We will see Dr. Cutler again on Monday. We will see Dr. Doshi again the following week.
Even worse than the hard time breathing, is that Izzy has stopped eating. Not just milk, but solids as well. We think the antiboitic is making her stomach ill and she is vomiting flem, so she doesn't want to take anything. I managed to get her to take 1.5 ounces of milk this morning 2.5 mLs at a time using a syringe (there are 30 mLs in an ounce) and then another 1 ounce mixed with cereal and applesauce. That took us a good 1.5 hours and a lot of fighting, with Mama holding Izzy's arms down and tricking Izzy to open her mouth. We couldn't do any more since I ran out of tricks to get her to open up. Luckily, she hasn't started to look dehydrated yet, but she has lost 11 ounces since Wednesday. That is a lot (about 4% of her body weight in 6 days)!!! Dr. Cutler kept asking Izzy if she remembers the n-g tube. Izzy laughed, but I'm sure she doesn't remember. I do though. It is not terrible (except on her GI system), but I'd rather not have to go there again, especially since it is probably just related to this respiratory infection.
I wanted to end this post upbeat, but I can't. We were supposed to be at the point this week where Izzy was awesome. While we can pick her up under her arms without causing pain, she can take a real bath, and she is trying to stand up, Izzy's lungs are worrying me a lot. Dr. Cutler thinks it is possible that the left lung is getting too much blood flow because of the fix plus the collaterals already in existence (which I believe is why the right lung is okay despite the 3mm pinch in the PA). This is not a "problem" per se, but an issue, especially at times like now when she won't drink. We are trying to hit that delicate balance between keeping Izzy's lungs dry and keeping her hydrated. I just hope we can get to that point by next Monday when I go back to work. Keep your fingers crossed.
Mel
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