It is bitter to imagine the pain that they are experiencing, the devestation and torent of emotions. I could hardly bare to drive Aimee in for her appointment days yesterday and today, to take her to the hospital where sweet Cami spent her last days. Our hearts are tied to this family always and we are crying, grieving with them.
I did manage to make it through the entrance for Aimee’s clinic appointments, though I wanted to turn around. She met yesterday with her Pulmonologist. Her nurse at home has been concerned about decreased lung sounds on her right side caused by some mucous plugs. We are increasing her cough assist frequency and using more inhaler treatments even when she is well. The doctor is wanting us to use her bipap with her high heart rates during the day or when she needs oxygen for periods longer than an hour, as he is concerned about avoiding pulmonary hypertension as much as we can. He had us do a blood draw for electolytes to check her carbon dioxide levels again. Her September count was high for her (her normal is already high).
Today we met with the GI Nutritionist. Aimee is quite slender, though in the healthy range at 15th percentile BMI. We would like to get her more of a buffer, get ahead of any challenging sicknesses ahead. We are going to attempt a small increase in formula to add some extra weight. Hopefully she will tolerate the increase. We also had her zinc and vitamin c levels rechecked with a blood draw today.
Aimee starts school again on Monday. For now her nurse is contracted to ride the bus and attend with her. We are praying that this becomes the permanent situation. It would definitely be the ideal.
My prayers are still with your family, and extended family.
ReplyDeleteGod knows what he's doing. Would it be nice if he let us know.. ;) :)
My prayers continue for your family, and your extended family as well.
ReplyDeleteGod knows what he's doing. Sometimes it would be nice to know ahead of time. Lol. Hugs and Prayers