Wednesday, July 18, 2012

18 days and counting

*  (Started writing this Tuesday night but finished after midnight, so "today" was meaning reference to tuesday)

Monday I took Gina for another eye exam.  She has been refusing to wear her glasses since winter, and refusing to do her eye exams.  We got a new doctor now, and he is better with her anxiety than the last.  Her prescription was lowered, and she can't wait for her new glasses to be ready for pick up.

Cecilia has no more chest tubes, but a complication came upon removal.  Some air in her lungs, they said it usually fixes itself, but in her case it didn't.  So they inserted another tube to her right side.  They were not able to do the Picc line again, so this morning a central line was placed in her leg to replace the lines in her neck.  Melanie said on Monday that Wednesday might be the day she gets off the vent, but that's not happening.  She now finally has the NJ feeding tube.  I did not visit Cecilia at all today.  When Daddy arrived, Cecilia's roommate was having an awesome moment.  She was extubated and everyone was cheering for her.  It's awesome for them, but kind of just makes us feel worse, that our childs surgery was so much longer ago, and she is not doing as well.  How do they expect us to believe them when they keep telling us she is doing so incredible when in comparison to all the other patients here, shes not...  My daughter doesn't even know me.  Karl couldn't stay there long, it's just been extra hard on us since Friday.  The sadness in his voice when he told me made me even more sad.

Figured since there is not so much to write about I will just do a recap of the past 18 days.

-Cecilia has been on the ventilator for 18 days and counting.  It is always needed for surgery, but Cecilia had respiratory failures, so required it before surgery. The tube placement has been changed 3x.   

-Cecilia has had too many de-sat episodes to count, where she falls to the 30's, sometimes 20's, and has to be brought back up manually on the pump.  It occurs when she is "messed" with.  Because of this she has always been heavily sedated to keep her calm and stable.  She has built a tolerance to her sedation, but now de-sats when "messed" with usually to the 50-60's and she will climb back up on her own now once she is left alone.  Of the times this has happened when not messed with, they have said it was due to a clog in her breathing tube.  She is now completely off Fentanyl as of yesterday, and on Methadone + Ativan for withdraws and allowed Morphine and something else as needed (PRNs).

-Cecilia has had 4 failed attempts of PICC line placement

-I held Cecilia on the eve of surgery for about 10 minutes♥

-Cecilia had her stage 1 surgery (Norwood- Sano)at 4 days old, 14 days ago.

-Cecilia had her chest closed on the 6th day post-op, and it was a second attempt.

- Cecilia's HLHS is textbook, classified as aortic and mitral atresia.  She has Moderate Tricuspid Valve Regurgitation and severely hypoplastic LV and aorta.


They have told me that these 2 meds replacing her sedation wont make her as sleepy, but the past 2 days she has had to have a paralytic for procedures-- so maybe in the morning she will be awake again for me?  I really hope so.   Sometimes it doesn't feel like anybody is in there.  I want to meet the person she is...my daughter.  18 days old and we are strangers.  :(