The appointment went well. There hasn't been any change. Which is a good thing. We would like it to be better but at least it isn't worse. I talked with his Cardiologist about how another t18 mommy had told me about how her little one's pulmonary hypertension had gotten better with having a bipap. He explained that it can get better if the ph isn't caused by lung disease. I asked if we knew that with Caleb. He said no but that it may be a good idea to have a scan of his lungs to see where the cause of the ph may be. If it isn't lung disease then there may be hope to correct some of it. Praying, praying, praying. The only problem is that we will not allow Caleb to go under sedation for any of these tests. It is too dangerous. So we need to see how creative we can get to get this done. He is weighing in at 11 lbs 8 oz!!
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My son has lung disease...and did have PH for a time, we moved away from our high altitude home...and moved to sea level which helped a lot.
ReplyDeleteMy son has had 2 ct scans...it can easily be done unsedated you just won't get as good of a picture. Be sure that a pulmonologist looks at the picture...not just the radiologist. And you can treat PH with more than bipap....there are drugs he can take...and i know I read earlier there is hesitation in using oxygen becaue he doesn't like things on his face.....that in itself, not using the oxygen, can cause the PH as well. The lungs can stress out the heart....and up your PH levels will go, and vice versa.
HTH
Sarah