Friday, August 19, 2011

Back Yet Again...Critical Yet Again

I should be sleeping.  I just can't though.  I feel like I'm living in a neverending nightmare.  We are back at Santa Rosa in the PICU...her blood clot around her fontan has decided to rear its ugly head with vengeance.  If you were looking at my girl, you wouldn't know how critical she is...she doesn't even think she's sick.  Her sats were significantly lower, we had to bump up the oxygen at home, she was bluer, less active, and heart rate erractic.  We took her back to the cardiologist Wed. morning and we were admitted to IMC that afternoon.  We couldn't get her sats above 80...We had been home 3 weeks.  We were doing okay...she was on oxygen and we were weaning but she was feeling good, eating but it seemed that we were building more clot (even though we were on coumadin).  So, you might wonder why she's so critical...the huge clot around the fontan, can't remember what they are calling it right now...it could easily break off and going into places that can cause serious damage, heart failure/stroke...she wouldn't survive...so on agatraban a clot buster...but then you have to do something more...so a heart cath is scheduled.  It is supposed to bust and suck up a lot of it...however it is incredibly risky...but it we do nothing, she'll die...the medicine approach has its own drawbacks and it may not be effective either...it's hard to make that sort of decision.  I pray I made the right one.  I watch her sleep and think to myself, please help her be strong....help me to be strong...the doctor said that she'll need lots of blood and that she's going to be sick afterward...who knows how the other little pieces that break off that aren't filtered as well will affect my poor sweet girl...I'm praying for a miracle that somehow preserves her life without much damage to her precious and fragile body and mind...I just am trying to keep my mind positive but at the same time you can't help but be incredibly terrified of the unknown and the unwanted what if...I have incredible faith in God but I also know that God's plans are sometimes not the same as mine.  That scares the heck out of me...Then in the back of my mind, I keep thinking of my job...school starts with kiddos next week...just found out they are counting my 2 1/2 absences...going to end up being docked my pay because I will have to use more than the 10 days I had..probably going to do FMLA but I feel guilty for my Wood family (staff and students) because there is no library assistant and seriously unless you bring in an actual former librarian, how will they be able to run the library and all that comes with it?  And the battle in my control freak brain hates the idea of someone who doesn't know jack about it messing everything up that I have worked hard to establish and I already feel like I am trying to catch up with everything at work from round #2 in the hospital.  Honestly, I am super overwhelmed.  I want to get off of this roller coaster (which I ususally love roller coaster rides at theme parks).  Please pray for my girl...pray for me and my family for strength to get through this difficult and trying time.

2 comments:

Donna said...

Praying for all of you! Stay strong!!!

Debbie Sauer said...

Hope things go well for all of you. Please keep us informed. You are in our prayers. Blessings