I don’t know – which would you choose? ICU days versus being at home with family.
We had our Pulmonology appointment yesterday. It went well, I guess. He increased her heart med. He significantly increased her sildenafil. Since the last time we did that, her blood pressure bottomed out (40/20), we are gradually increasing it till we get to the right dose. We had 2 chest x-rays and an ECHO.
He doesn’t believe our 2 months of total vent dependence is only allergies – hence some of the tests and the added antibiotics. He also wants her to do HME trials for 15 minutes twice a day. Gulp, swallow. I explained the retractions. I explained my fears. In his kind, grandpa way, he asked me if I was taking happy pills. :) He was joking – we have a wonderful relationship and joke around with each other. I dearly love this man – but I have been thinking a lot about what he said. I am afraid. Seriously afraid of being off the vent. I hate to watch her work so hard. I hate to see her retract. I hate it. It takes me right back. Back to a very bad place. One where I have no control. One where my baby is fighting for her life. I don’t like that place – at all. But I think I am holding her back by my fears. My fears. My fears have kept this child alive. Several people have told me that she is alive because she is in this home. I don’t say that for praise or to sound conceited. She has needed so much support. But she is better. She can do this. I can do this. I need to let my fears go. The ones I hold hard to. We tried an HME time this morning – after OT and before her ambulance comes again for another trip downtown this afternoon. Her heart rate shot up 10 points right away, so I grabbed her and held her. Why make her work any more than just breathing? She calmed down – I was sending calming and confident vibes :) – I don’t want to hold her back. As the minutes ticked past and I sang to her, her breathing got harder and faster. Poor sweet little love. 13 minutes I called it – she was getting upset. Done. We’ll try again later. She can do this. She has been there before, we can go back there. I really, really would love to have her off the vent. I dream about it – she will be able to do so much more. She’ll be able to interact more with the family. But her vent is my security blanket. It makes me feel better, calmer. It’s a protection against the bad place. Sounds like the doc is right. I want to do the best for Bella and I have to be rational to do it. I don’t think I’m ready for the neighborhood shrink, but I do think it’s time for some more thinking, writing, processing, and praying. Bella needs a good Mama. I love ya sweet girl!