Wednesday, July 20, 2011

The weekend.(and the first half of the week, since Ive been writing this for 4 days)

For the most part, Grace had a good weekend. On Saturday she had a cranial ultrasound to check on the fluid levels in her venticles because Friday night I guess she was just very fussy. Her nurse described her as "her pre shunt self" but the ultrasound was fine and she went on to be fine. So on Saturday she got to play wiht her big brothers for a bit, this was the first time they had been up to see her since the shunt. She was a little fussy at first, but then she ended up not minding them and she liked when they held her hands. The boys were so excited and happy because we let them hold her. She lounged in their arms and was pretty happy.However, then something scary and unusual for her now happened. She started to fuss just a small amount so I started changing her diaper, she wasn't even screaming or that upset. Then she started to desat. Big time. She went down to 31%. For a number that should be as close to 100 as possible, that's not good. She was very pale, limp, quiet, and blue. She recovered with a few minutes of extra oxygen and then was fine, back to satting 100. They did a chest xray and it looked fine, we have no idea what happened. It was pretty scary but she has been fine since.
On Sunday I got to take her for a walk around the 4th floor wiith a nurse. Grace really liked being in the stroller just strolling around, we only walked for about 10 minutes.
On Monday we gave our first try at nursing. It didnt last long and though she didnt hate it, she didnt love it either, and didn't really know what to do. I'll spare the details but will share if you are interested. Tuesday I tried again and it was an immediate fail/freakout so I'm not sure I should try again. She obviously wouldn't be doing it for nutrtion as she is fed bypassing her stomach but maybe for comfort and practice using her mouth.
This morning I was told that by her nurse (who is one of her primiaries, so she knows her well) that Grace got madder than she's ever seen her and she desatted very low. The monitor read 12 but she was kicking and moving so she's not sure if 12 was accurate because you would think at that low she would be passing out, but she was dusky and her lips were blue so she was very low nonetheless.
Tomorrow is ECHO day, we'll see if upping her oral med and switching to jtube for meds has made any difference in the pphn. I really hope so.
I'll try to update again tomorrow, I know I havent been keeping up on it as much as I'd like, most days I don't get home from the hospital until after midnight and if I am home before then theres entirely too many things to do around here. Please continue to pray that she might turn around on the pphn front. It's basically the one thing thats keeping her there, but unfortunately its a very very big thing.


  1. It's going to get better. It's going to get better. It's going to get better. Just keep saying it over and over. You have a ton of people all over praying for you and Grace. You must be incredible busy and stressed and exhausted! Big hugs for you and Grace and the rest of the family.

  2. I know you are so exhausted. You are juggling so many balls in the air right now. One day when Grace is home and happy and life feels normal again, you will look back at this and wonder how you did it. But I know you will do it! Sending many thoughts and prayers from North Carolina...