Friday, August 31, 2012

I've got no strings...

I have been singing, "I've got no strings to tie me down all day..."  for my sweet Gracie girl.  Even now over 24 hours later of taking the oxygen off I can't think about it without crying.  My girl is free!!  It has been so fun to watch her discover the world free. 

Gracie can go without having to wait for someone to carry her oxygen behind her.  She can swing without being slowed down by the dragging oxygen tube.  Gracie can play hide and seek and not be found by following her oxygen.  And the list goes on.

Today was the first time, since Gracie has been mobile, that she hasn't been frustrated by how much she was being limited by the oxygen.  Seriously the normal melt downs and whining that we hear were gone today.  I know she misses her oxygen, but Wow.  This has been monumental!!

Its a little humerus watching her look for her oxygen and making sure she isn't going to trip over it.  She still wants it back if we ask her if she rather have it on or off.  But she is doing great!!! 

So her sats have stayed mostly between 84-92 throughout the day.  We are checking her every couple of hours and she is doing great!!  There has only been a couple of times today where she was in the low 80s, high 70s but within an hour she jumped back up. 

Tomorrow I think we are going to attempt our first outing tube free.  I can't wait to see her run around the gardens and being able to go where ever she wants!  Lets hope I don't lose her. 

I wish I was more eloquent so that I could fully express my feelings and emotions surrounding this new change. I mean Gracie has just had so many doors and opportunities opened to her just because the oxygen is gone. We are in heaven!!

Thursday, August 30, 2012

No more Oxygen!!!

I have been wanting to post for several weeks, but just haven't had the chance.  I still need to post about Spencer's birth and the girls' first day of school.  But for now, I want to post about how Gracie lost her oxygen.  (hoping that the baby will let me write it all down)

August 2nd Gracie had a heart catherization.  The purpose was to see why she isn't sating as high as they would like her to post fontan (the third open heart surgery she had in October).  All went well with the cath its self, except Dr. Day ended up stenting open her pulmonary artery and found some AVMs (basically her arteries and veins in her lungs are growing together instead of staying separate).  Because of this along with some other minor things, Dr. Jou, Gracie's cardiologist told me that she would need to be on oxygen indefinitely. 

We were devastated with this information, but took comfort in knowing that Gracie didn't know anything else and was perfectly content with her oxygen. 

Today we had a follow up visit with Dr. Jou.  I wasn't too nervous and didn't expect much.  We checked in, went for Gracie's chest x-ray and got weighed and stuff.  As the nurse was taking us back into the room, the doctor yelled, "see where her sats are with the oxygen turned off."

Gracie's heart rate was great, blood pressure was within the 'normal' range.  Sats on oxygen was 88 off was 86.  Nothing out of the ordinary.  When the doctor came in he played with Gracie for a moment and then turned and looked at me and said, "well lets turn the oxygen off."

I said, "What?!  I thought you weren't letting her come off."

Turns out Dr. Jou and Dr. Day (the heart cath doctor) spoke more about Gracie's cath and decided that the AVMs weren't too bad and that being on the oxygen doesn't seem to be making much of a difference.  When Gracie is getting 100% oxygen (breathing tube/intubation) her lung pressures are 15% (higher than they want, but manageable).  When she was only on 30% oxygen (the cannula) her pressures were 16%. 

So Jerry, (yes we are on a first name basis) said he wanted to give Gracie a chance of normalcy.  He wanted her to be a kid and not be tied down to oxygen.  So he said I could either wean her off slowly or just take the oxygen off and see how she does. 

I didn't know what to say as he was telling me all of this.  My first reaction, I wanted to jump out of my seat and kiss him.  But I didn't!  Then I started crying, I was happy and then I got scared and then I just felt a whole slew of emotions.  Jerry gave me a hug and told me she'll do great and we could always put her back on. 

So he wants her sats at 85% or higher.  He is ok if she drops into the low 80s, but instead of hooking her up immediately if she does drop, he just wants me to watch her closer and see if she comes back up in a couple of hours.  If she doesn't then we need to hook her back up and maybe slowly wean her down.  Of course, if she becomes super tired or lethargic, oxygen goes back on. 

So far, Gracie is doing great.  We turned the oxygen off at 12:30pm this afternoon and it has stayed off.  Two hours later she finally let me take the cannula off of her face.  But within minutes she was looking for it and even had a mini meltdown wanting me to put it back on.  I was able to talk her out of it, but she did mention a couple more times tonight that she wanted her oxygen back.  If it comes down to it, I will just put the cannula back on to give her that emotional security. 

Our lives changed today.  Our house is quiet for the first time in 4 years without the buzz of the concentrator running continuously.  Gracie still was walking around lifting her legs like she was managing her O2 still, but overall she is loving her new found freedom.

I am still in shock.  When I look at her, I keep thinking we need to hook her up or is she ok?  I said to my sister--in-law that taking off the oxygen was so exciting, even more exciting than finding out I was pregnant.  I feel like doors and experiences that Gracie has never had are now at her fingertips.  She can run and not get pulled back by her oxygen.  She can go up and down the slide without a tank behind her.  She won't get looks from strangers wondering what is wrong with her.  People can she her now instead of her oxygen as a precursor. 

I just can't think about it without tearing up.  Hoping that she will do well off of it!