Monday, October 1, 2012
All 3 kids were admitted to the hospital on September 4th. Matthew stayed for 2 weeks, Abby and Michael both stayed for almost 3. They actually got discharged early since our insurance company refused to pay for any more days. They claimed that the kids were "stable enough to be cared for at home". So home they came. Michael has been struggling since he got home. He has been running low grade fevers more days than not and he is needing his oxygen all day long instead of just at night. He has been coughing up and vomiting up gobs and gobs of mucous. He has moments where he struggles to even finish a sentence because he can't catch his breath and he is struggling with going up and down the stairs. He has been grumpy, emotional and just plain hard to please. I don't know what all of this means and I'm scared. The only thing I know for sure is that we are inching closer and closer to transplant. When we went to Pittsburgh, the pulmonologist actually said if Michael continues on the path he's on (gaining good weight and blowing pfts in the 40s) he might never need a transplant because pharmaceutical companies are working on a correction of the CFTR defect for his mutation. If he can hold on for four years, this pill could be a miracle drug for him. The doctor said he is an optimist and that is the path he hopes Michael takes. But it's not the path he is taking and I knew in my gut when he said that it was not reality. I talked to his doctors here and they agree with me. They are sticking to the 2 year prognosis. I hope and pray that Michael proves them wrong but I don't want to be an ostrich with my head buried in the sand and not think about all the possibilities. I sincerely wish someone from the insurance company could come to my home and see how "stable" Michael is. I hate how they make judgements without knowing what is truly going on. Michael is sick. Michael has been sick for a long time. Michael is not going to get better. He is only going to get worse and we have to watch it happen. I wish I could explain to them how heart wrenching it is to watch your child struggle for breath, cough until he vomits, have people stare at him when we are out and about because it's unusual for a child so young to be wearing oxygen, how I have to answer his questions about why people are staring, how when I tuck him in at night and lean in to kiss him, I breathe in his scent and try to memorize every detail of his face because I don't know how long we have. But I don't think I am capable of putting it into words that they would understand because they don't know and love Michael like I do. To them he is just a case number and an expensive one (I'm sure). One of the good things that happened while Michael was in the hospital, he got his last hepatitis A and B shots. He was supposed to go to the pediatrician for them on September 17th (That was when the last shots in the series were due) but after me going off on a handful of residents, it got done. He was up to date on his shots but when the team in Pittsburgh did his blood work,. they discovered that he wasn't making antibodies to hepatitis A or B so they requested that he repeat the series. That was the last thing on the list that they asked us to do so I will be calling the transplant team tomorrow to see where we go from here. I will, of course, keep you posted.