Tuesday, August 30, 2011

We're Home and I'm back at work

We came home Friday afternoon.  Gracie was antsy to get back home.  She's done incredibly well with spending most of her summer in the hospital.  I don't know if she's quite processed everything.  I know I'm still processing things.  I know that my daughter is a miracle child.  I know that there were a couple of times I almost didn't have my daughter.  I know that I still get a little emotional when I talk about some of those times.  I feel guilty sometimes because my parents have been watching Gracie while I have been at work this week.  I don't ever want to feel like I'm taking advantage of them.  They have pretty much been my main support system as far as the actual physical care of Gracie.  Everybody else I know has to work like me.  I worry about my job,  falling behind, and getting my pay docked.  I also worry about another trip to the hospital.   I keep telling myself that I have to do what I have to do and God will provide.  He always does.  I also have to keep telling myself that Gracie is going to be okay. She knows herself.  She used to want to wear her canulas for oxygen the second time we came home.  This time she says she doesn't need it.  I think she does though, at least some of the time.

Gracie is doing okay.  Her sats were a bit better in the hospital but she's also been more active.  She's been playing like mad, singing along to the Fresh Beats,watching Hello Kitty and Ni Hao Kai Lan.  She has also been acting out more, especially in the evenings when she's tired.  It got to the point one night that she ended up sleeping in her own bed in her own room.  She stayed there until 4 a.m. when she appeared on the side of the bed, sweet as pie, wanting to sleep with me.  Of course I let her.  We go to the cardiologist tomorrow and to play therapy to help her deal with her anxiety issues and the big changes in her life.  I am praying for good news and I think the therapy will be good for all of us.

Sunday, August 21, 2011

She wants what?

After all that has been said and done to my sweet miracle, I am finding it hard not giving her most of what she wants...I don't want to create a bratty monster.  In fact, she really doesn't ask for or demand anything.  But she blew me away Friday evening when she asked me for a sister.  So, after my best friend, who is pregnant and due tomorrow, leaves Gracie says, "I want a sister." "A what?" I ask her because I couldn't really understand what she was saying.  I start naming things around the room and she shakes her head no, that wasn't what she wanted.  Finally she said it slowly, "I want a sisss-taaaahhh, please, please, please."  "A sister?"  She nods her head yes very vigorously and continues with her sweet please, please, please plea.   I said to her, we can talk about it when you get healthy.  She grins and nods like she has won the lottery.  I think she thinks she is going to get a sister and it'll be fun.  I volunteered my best friend's new baby to be a trial sister for her but she said that she wanted her own.  She didn't want a baby sister though.  She wants a younger sister who she can play with.  I honestly have always imagined having a second child, a sibling for my sweet girl.  However, in light of her serious health issues, I took it off the table so the focus would always be Gracie and I never wanted a sibling to ever feel slighted because of the attention to Gracie's health.  We talked about how a sister would affect our life, not being able to travel as much, etc.  She briefly changed her mind but went back to wanting a little sister.  She totally threw me a curve ball...she had totally been okay with being an only child and now she wants a sister.  Something to think about. Not immediately. Maybe in the future.

Saturday, August 20, 2011

I believe in miracles!

I always knew my girl was a miracle girl...first even making it 18 months in China without surgical intervention.  Then on July 14, 2011, when she suffered heart failure, we almost lost her, but the awesome medical team at Santa Rosa gave her the medical intervention she needed so she could survive. But yesterday was probably, in my opinion, the one that just blows my mind.  Yesterday, we were holding our breaths because the doctor was going to do a risky procedure in the cath lab to save her life by busting and sucking up the large blood clots around her Fontan and her pulmonary artery.  When he went to do pictures before he actually began the procedure he found nothing...NO CLOTS! He double checked, triple checked...no clots!  It could be argued that the CT scan that showed this clot was seriously wrong but I like to think it was a miracle...the power of God and the many prayers...I am so awed by my God and so thankful to him and all her prayed for us.  I am eternally grateful.  The other great thing is that they think they know why Gracie's sats were off...high pulmonary pressure in lungs...found that nitrous works and they think they have found a medicine that will work like the nitrous...which means maybe no o2 for her when we go home.  We probably have about a week here.  My students come back next week but my supportive and fantastic principal is closing the library next week so I can be here with my sweet girl.  We are still in PICU but we hope to transition to IMC (intermediate care) unit later in the week.  Thank you all for your thoughts and prayers.  Keep them coming as she recovers and starts this new medicine.  I hope that it does what she needs it to and gives her the extra boost to recover from the heart failure and allow her to be a 3 1/2 year old little girl.

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.