So Jenna saw the Hematologist a couple weeks ago and all ent well. We are trying iron drops and hope that she can stomach them. She never could handle iron before, not even as an infant. But so far, so good. As w/ anything with Jenna, we are taking it slow by adding 1 drop (15 mg) every 4-5 days. So far she is handling 20 mg from her vitamin (yes... this is progress) and 3 drops supplement. We are have way there as she needs to reach 3 more drops to be at the right dose. At that point we will be able to rule out an iron infusion. So fingers crossed that she continues to doe well w/ supplementation.
On another note, the "Saga" continues w/ the hospital bed. Uinvera is being a pain in our butt by denying the claim. Apparently their (stupid) policy states that one can have an electric hospital bed only if they are able to help transfer themselves in and out of bed or to a transfer board. ONLY then will it be considered "medically necessary." So if you are 100% disability (like Jenna), you are not "medically justified" to an electric hospital bed. CRAZY! So we appealled their decision and thy updeld the denial. So now we are waiting for paperwork to do an external appeal internally (due to the employer being self-funded). Yep.... more craziness!
Health wise, Jenna is doing ok. She does have some junk in her lungs that we are working on, but she is ok. No fevers or anything. When she lays on her left side, her sats drop to 94-96. When you put her on her back, they go back up. So we have increased respiratory treatments to 4x day including chest PT w/ each and have added an additional nebulizer treatment w/ Xopenex. Today she sounded a little better so we are hoping the additional treatments will continue to help.