Sunday, May 12, 2013

ChinaBean Update...It's All Good!

I am so happy to say that this update is filled with only good news.  My prayers of "please, please, please" have been replaced by "thank you, thank you, thank you".

Our Tuesday started very early.  A last bottle at 11:45 am, a 4:45 alarm, and a 6:00 am arrival time at the hospital made for a short night.  I did manage to sleep, though.  After checking in, ChinaBean had a blood draw for blood typing (and she was not happy about that) and an EKG.  Afterwards, we checked in the pre-operating area.  I managed to keep myself pulled together until the chaplain came in.  The chaplain was our link to what was going on in the OR and kept us updated throughout the day.  But it wasn't all tears Tuesday morning; we had some smiles too!

Taking some pre-op notes!

About 8 am, a nurse came to carry ChinaBean back to the OR (operating room). ChinaBean cried, but I think I cried more.  The first hour the surgical team were taking images and prepping her, and the actual surgery didn't start until 9 am.  ChinaBean's surgeon took some time to really look at her heart and see what the left ventricle looked like and where the placement of ChinaBean's heart was (its flipped and slightly rotated). From there he determined that a double ventricle repair was not the best option and that instead they would do a Bi-directional Glenn.  This is where the superior vena cava is directly run into the pulmonary arteries and it bypasses the heart's two atriums.  ChinaBean is unique because she has 2 superior vena cava.  Gravity and passive flow directs the blood right to the lungs to get oxygen to the blood.  

This will not be ChinaBean's last surgery.  The Glenn is the second step in a 3 step process.  She will need another surgery about a year from now.

We received a call from the chaplain when ChinaBean was placed on bypass and every two hours after that.  To keep us distracted, we had family and friends drop in and to keep the chatter going and bring us lunch.  I also had a friend in China who stayed up late in her time zone to play Words With Friends with me, although she did not go easy on me and let me win!

My friend Shanna brought us
chocolate-covered strawberries with
heart sprinkles.  The pager was one way
the hospital kept us informed on the surgery.

One of the nurses from the cardiology department stopped by and gave us more details on the specific procedure and what we could expect after the surgery.  She told us about the tubes, IVs and monitors that ChinaBean would have.  Then, she took us upstairs to the PICU to look at ChinaBean's room and we even got to meet her first nurse.  

Mid-afternoon the chaplain called and said they were finishing up the surgery.  He took us up to the PICU, we registered ourselves and got name badges and then waited in the "meditation room" for the surgeon to come talk to us.  The report from the surgeon was that ChinaBean did really well and the surgery went as expected.  He explained why the single ventricle route was the best, told us that ChinaBean did not require any blood products during the surgery (meaning, no transfusions), she wasn't on bypass for an extended period of time, and that she was already breathing on her own.  Then the surgeon escorted us back to see our daughter.

Many people had talked to us about the many, many tubes and wires she would have and I had really built it up in my mind.  For some reason I really expected the chest tubes to be humongous (probably too much Gray's Anatomy), so I was glad that when I saw her, I felt relieved.  She looked so much better than I had expected.

The rest of the day was spent trying to keep ChinaBean as comfortable as possible as she woke up from the anesthesia. A few times she woke up quickly and sat herself up and once she even stood up (oops)!

The next day, Wednesday, they felt her stomach was ready to handle something to eat.  Over the day ChinaBean was able to polish off 2 1/2 popsicles and that improved her mood greatly!

Eating her first popsicle. 

Lots to monitor
Wednesday afternoon, ChinaBean started doing this...

She was trying to sleep as close to me as possible while still being in the hospital crib.  We decided it might be best if we got a big bed and then Jamie and I could lie next to her.  It was a great decision and she immediately started resting better and continued to sleep off-and-on for the next 12 hours!  When she woke up briefly, I knew she was feeling better because she started using some words and giving me some "love pats" (where she pats my cheek).  It was a good sign.

When she woke up at 3:00 am on Thursday morning she was hungry!  She took a bottle then and again at 5:30.  Then she started eating like she hadn't eaten for 2 1/2 days because she hadn't!  She had sausage, oatmeal, ice-cream, cookies and, as you can see below, pizza.

Thursday night we said good-bye to Kris, the first nurse we had after ChinaBean's surgery.  Kris wasn't working for the next several days and we would (hopefully) be discharged by the next time she worked a shift.

Friday was another big day for ChinaBean.  Her chest tubes and arterial line were taken out and she went for her first walk.  Taking out the tubes there were no tears...walking to the nurses' station...all tears.
A little unsteady and not happy about it.

Even the paci can't make her happy.
After she made it to the nurses' station, ChinaBean hopped a ride in a wagon down to the activity room to pick out some new toys to play with.  The tea cups, spoons and forks were a big hit.

Friday night wasn't a great night sleep-wise for ChinaBean and therefor not for Jamie and me.  She wasn't in pain, but she couldn't get comfortable and was probably tired of sleeping in one spot.  She might have been regretting all of the food she had eaten the day before.  Finally at about 4 am she got comfortable and slept well for several hours.

Today we hope to take her for another walk and finish her last IV medicine before switching to all oral medicines.  Her additional oxygen was stopped and she is now completely on room air.

There are rumblings that we might be discharged tomorrow, which means I will get the best Mother's Day present I could have asked for. 

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