Saturday, May 29, 2010
There are the really good days of parenting....days where you just marvel in your beautiful baby and think how lucky and blessed you are. And then there are bad/frustrating/discouraging days where you wonder how much more you are going to have to deal with. Days like yesterday...for example. It all started on Monday. We had a cardiac appointment in the afternoon- her surgery follow up. She got her stitch removed, was weighed etc and had an echo done. We took her to the appointment without oxygen. In Boston, they had all told us that we would see her local cardiologist who had originally put her on oxygen and he would be in charge of starting the weaning process. It would probably be a few weeks, they said, that she would still need to be on oxygen. I was disappointed that we weren't taking her away from Boston without oxygen, but I understood that it would take time for her to be fully healed and I figured that we had already dealt with it for almost four months- what's a few weeks more? Well, we went to her appointment on Monday, ready to discuss the oxygen weaning process. I asked Dr. Yeager how we would go about it and when we could starting having her on the O2 just at night, and he got rather short with me and replied that we would have to wait to hear from Boston- when they thought that we should start to wean. I told him that they had told me that they were leaving that call up to him since he was her cardiologist. He got pretty curt as he replied that he would have to hear that from Boston himself. I left the appointment rather frustrated, not sure what the next step was. Well, I get a call from Dr. Yeager's nurse yesterday afternoon. She said that they just spoke with Addison's team in Boston, and they have decided that they will do a heart catherization six months from the surgery (November) and that we will discuss starting to change her oxygen useage then. I am just devastated. They really led me to believe that we were weeks away from being done with the whole oxygen thing. I am just so tired of dealing with all of these extra medical things. Especially since I watch Addison very closely and I know that she is already ten times better than she was with her breathing...and her surgery was only three weeks ago. Why do we need to wait until November to reassess? It feels a bit like they don't really know what to do with her, so they are waiting for someone else to make the call, but no one will actually step forward and say it is OK to stop using the nasal cannula. I am just so extremely frustrated. November- that means that she will be nine months old before I can actually stop taping up her face every day and can carry her around my house without tripping over her O2 cords and that I can't just snap a picture of her doing something cute without her nasal cannula blocking half of her face. I can't put her to bed at night without worrying about her pulling it off her face (she does this frequently) and then getting caught up in the cords as she wiggles her away around her crib. It is so easy for the doctors to just put this off...but for me it is very hard to think about doing this all for another five months. Yesterday, I was thinking. I really have made my peace with the fact that my daughter has Down Syndrome. But the fact that I have to keep her on almost 24 hours of oxygen for the first nine months of her life- to me that doesn't seem fair. Why can't I just enjoy my baby? Surely there is another way. Why are they so afraid to take her off the O2? Addison was born with TAM, which means that she has a one in three chance of developing leukemia before she turns 3. I am now imagining that when she finally is allowed to come off of oxygen, maybe we will have to start dealing with that. I am just so extremely frustrated, and I don't know how to solve this or where to direct my frustration.