April 11, 2012

The plan

The doctors met today, they have a plan.
but, before they even came in to talk to me the TR(works the oxygen and pressures of the mask) turned up the pressure to the highest setting. He didn't tell me that the doctors had met yet, he just said they were turning it up to make sure she didn't crash before her birthday on Monday. I knew that ment they had met and that it was decided they were going to give Hannah a Traech.
Next the nurse(that I hadn't seen yet today) and Jane the discharge planning nurse came in. Jane had this look on her face and didn't say anything to me. I new it was bad.
Jane told me that they were giving her a Trach and they would call ENT(ears nose and throat) to come look at her and set up a date to do the surgery. Jane told me we would still be in the hospital for a long while yet. She mentioned that they talked about Hannah's survival rate but didn't want to discuss to much with me because she wasn't the doctor.
When the doctor finally came in she confirmed all the things Jane had told me, she wouldn't go into detail about the survival rate but she did stress that she would easily catch colds/bugs/viruses and that it could easily turn into pneumonia, we would spend most of our time in cold season in the hospital. She told me that her lung disease is extremely bad and that she didn't know for sure if it would get better just that with healthy diet and lots and lots of time we could hope it would improve.We will eventually get moved out of the NICU once Hannah's tracheotomy healths and be moved into the PICU. She is no longer on room air or just above she's on 3 litres of oxygen now.

Hannah's Next blood gas is on Friday. I asked the doctor if it is bad on friday if we could wait till Saturday night to intubate her that way at least we can have pictures and pretend its their birthday<3

recap; getting Treach, might not ever get better, not going home for a long long time

Hospital day 362
11 months 27days


  1. I'm going to try to drive in tomorrow to drop of their shirts, so you can get photos before all that stuff happens. I want to make sure you have time if blood gas levels don't come back great on Friday.
    I think about you everyday, and pray for Hannah multiple times a day. You're so amazing, Bonnie. Your girls are incredibly blessed to have you as their mother.

  2. thanks susanne <3 <3 your so sweet! so caring <3
    thanks for their birthday outfits

  3. Love you sweetie Kyle and I will be there on Friday. The photos will be great.