Little Bella has captured the hearts of our family and everyone that meets her. We want to share her story with all.

Thursday, February 26, 2009

It Could Be Worse

current weight 3.955 kg or 8.7 lb.  We continue on 1/8 a liter of O2 with sats in the 80’s, occasionally high 70’s, occasionally low 90’s.

The doctor has been here.  He and I are delighted that Bella is doing well.  He is going to stop the antibiotics – yeah.  They are IV infusions that take over an hour – which is a pain when she wants to be held all the time.  And he said they are going to talk to the surgeons again – I did cover her ears, lest she hear the s-word and decide to get sick again!

I have had a lot of time to think and ponder and then try to stop thinking and pondering.  Arabella’s surgery itself isn’t going to be that bad – other than they will cut her chest open, break her sternum, slice open her heart and very delicately repair holes that are mm’s wide, then put everything back together.  Compared to other heart surgeries, it could be so much worse.  I am confidant in the surgeons and their ability to complete this procedure.  I have TOTAL faith in the anesthesiologists here.  I love them.  Two times now Arabella has been put under and brought back to me.  They are competent and compassionate.  My first hug here was from a pediatric anesthesiologist.  I have faith in the perfusionists.  These are the ladies that will keep the heart/lung machine working for our baby during her surgery.  I have faith in the CVICU – where Bella will recover.  I think they will help our girl the very best they can.  And it is here in the CVICU that I think Bella has the highest chance of dying.  Don’t get me wrong – I am not sending my daughter off to surgery to die.  But there is a chance – there is always a chance.  I think Bella has good odds.  So do the doctors and surgeons otherwise we wouldn’t be doing this.

I have hesitated to post about it because so many people read this blog.  You don’t need to worry.  Her odds are good.  I am not upset or crying.  I am being realistic.  It is better to be prepared for all possibilities and accept them than to be blindsided and swept away.

Anyway, the point to my ramblings is TCH is a pretty sobering place.  There are very ill children here.  A patient died in the PICU when we were down there.  The ones that kill me are the cancer patients.  I ran into a mom whose son has DS and leukemia.  His particular treatment plan is three years long – makes my 2 month hospital stay look like one second.  I have made online friends whose babies are fighting cancer and been amazed at what their families are going through.   Then I heard today that a friend’s daughter is here.  Baby E. has cancer – just diagnosed.   My prayers are with you and your family and all that lies ahead!   Instead of just facing a small chance of death we could be fighting for Bella’s very life with horrible, painful chemicals.  Things could be worse.

So just a weird little blog entry.  Bella and I are fine.  They are talking about the s-word again.  Hopefully we’ll start toward a plan (again). 

Love and hope to all!

4 comments:

Kathie said...

I am so glad that they are talking about the s word again! I sure hope that Arabella thinks this is a good time! I also think that being realistic is a good thing - helps us to prepare for all of the things that possibly could happen and then it is easier to deal with later. Love ya lots.

Donna Leavitt said...

Oh, Shelly! We are so close yet so far away. Bella and your family have been in our prayers since we heard about her going to the hospital. I check on you guys daily. Your blog is perfect. Thanks for keeping us updated. Please let me know if I can do anything. We love you guys! Love,
Donna

Ann RN SMMC said...

someone once said that if we all threw our problems into a pile and had to choose which ones to take out, we would choose the ones we had before.
Continue to cover Bella's ears when the s word comes up. And later when the d word (discharge)comes up.

Dolores said...

I'm sorry you and Arabella are having to go through this! I know the feelings you are having. I'll pray for you all and hope things just keep getting better!