Elizabeth seen Dr. Clos yesterday. This is her normal pulmonologist out of Lansing. She has followed E since E was like 3 months old. She is the one that first figured out there was a major problem with Elizabeth's airway when everyone else just wanted to tell me that E had croup or another viral infection. I am very fond of this doctor and love her to death. I would be lost if she ever retired!! I let her know what U of M said and she was completely on board with changing Elizabeth's meds around. In fact she said she would have done it sooner, but she knew how much E loves her nebulizer treatments. Now most kids hate them and won't sit still for them, E on the other hand loves hers and it's almost like a comfort thing for her.
She did decide to put E on some iron supplement. I had mentioned before that the neurologist had spoke of this, because her iron levels were low and that could be causing some of her restless leg syndrome, but he wanted her blood work done again because her red blood cells, hemoglobin, and hematocrit were all high and he was concerned about that and thought maybe it was cause she was sick at the time. I tried to tell him that E's blood work in those areas are always high. Because her longs don't function properly, she needs to have more red blood cells to transport her oxygen around properly and her body can't keep up with the iron she needs. There for after discussing this with her pulm, she decided she needed to be on iron supplement. I mean she has seen this kids blood work for 4 years now. So we are starting her on that and she has to have vitamin c as well to help absorb the iron. So I am giving her a multi vitamin now as well and may have to get her to drink some orange juice or put it in her feeding tube.
Her dr. was also concerned with Elizabeth's growth or lack of weight gain. E has shot up in height over the last few months but has actually lost weight. She was 35 lbs a few months ago and is now down to 32 lbs and she is 38 inches tall. I told her that we see the feeding doctors on Feb 7th and I will let them know her concerns. She did also tell me that as long as the bronch doesn't show any micro-aspiration then she was fine with Elizabeth attending the extensive feeding program and has already let the doctors there know!!! So yeah!!! Now to keep our fingers crossed that everything comes out ok on the bronch at the end of the month. And if that's the case then E will hopefully be attending the feeding program by spring or summer at the latest. Which is a good thing and hard thing!
Other than that, she said E sounded the best she has heard her in a very very long time and was glad to know that! She agrees with the dr in Ann Arbor that E has some underlying immune problem and it would be so nice to figure out what it is. She also ordered some more blood work to see how her immunoglobin is doing. That was what we tested a few months ago and what helps your body fight off infection. She also had her ige retested which is an indicator of allergies I guess. Her exact words were, "there is no doubt in my mind that this child will have some really bad allergies one day." Which I wasn't really surprised by as I have bad allergies as well and am on claratin all year and was also on singulair at one point and have coughing asthma brought on by my allergies. Other than that she said she will see what happens with the bronch and will see E back in 4 months. So all in all everything went well.
And Joe did get E from me after the appointment. And still has her. I will get her back on Saturday around 4 p.m. from him. And I am hoping against hope that they truly aren't smoking any where near her or exposing her to second hand smoke. And I will be able to tell the minute she comes home. As if she's around it she will be coughing and what not.
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