The Puddles

Dr. Fraser just spoke to us and Ben is doing well.  They removed all of the membrane and repaired the aortic valve.  The membrane was attached to the valve and have scarred the valve.  He said that many other doctors would have replaced the valve today but he didn’t.   Thank you Dr. Fraser.

They are trying to get Ben off the vent right now and to wake up enough to move him to the ICU.  We will see him there soon.  

The doctor doesn’t know why Ben keeps regrowing this membrane.  He is just special that way I guess.  But he truly thinks that Ben will grow this membrane again.  We will just keep watching it.  

Thank you God for the good news today!  Now onto recovery!  Game on!

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They just called.  They have saved Ben’s valve!!!!!!!!  There is no need to replace the valve right now.  YEAH!!!!!  Everything looks good. We will hear again in two hours.  Hopefully that update will be from the surgeon and he will be back in the CVICU.

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They have resected the membrane and repaired the aortic valve.  They are warming Ben up and getting ready to take him off the heart-lung bypass.  They will test the heart valve and see whether or not it needs to be replaced.  We are waiting to find out.  We know more in two hours.

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We just got our first report.  They just placed Ben on the heart-lung bypass machine.  It has taken most of this time to prepare Ben for the operation and to cut through all of the scar tissue. He is doing fine.  We will get another update in 2 more hours.  Hopefully at the next update we will hear if they were able to remove the membrane successfully and whether or not the valve needs to be replaced.  We will let you know more soon.

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We arrived this morning early by 15 minutes (Thank you Mom for making sure that I was awake). Ben is in a good mood this morning eventhough we woke him up at 4:30am to give him a drink of sprite. Ben picked cherry for his flavoring today (medicine and breathing treatment). They gave him his medicine at 7:30am and he was happy. Very happy. So happy we really wanted him to share some of the good stuff. He didn’t. Darn.

After an excellent prayer by Pastor Mike B., they wheeled him back. After all of the drama about “the doors”, he didn’t even realize we had left him at the doors. Many tears were then shed. He is in excellent hands. Both God’s and the doctor’s.

We are just waiting to receive our first update. Thank you for the prayers. It is not over yet, so keep praying. He needs them.

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Tomorrow we leave at 5:30am to go to the hospital for Ben’s surgery.  He took a tour of the hospital today and talked to the child-life specialist.  Besides the drama of all of the testing, the tour was the hardest.  The good news is that the entire cardiovascular waiting room areas have been redone and roomier and nicer than the last time.  The bad news is that Ben saw patients in the CVICU (not intentionally but on the way to see the empty room on the tour which just happened to be next door to the room Ben was in the last time) and other kids and I think that it made it real.  One of the jobs that the child-life specialist gave Ben for tomorrow is to say good-bye to mom and dad at the double doors (this is when he leaves to go to the surgery).  He absolutely does not want to be separated from mom and dad and go back to the operating room alone.  He will start to stare out and get grumpy and then he says that he is sad about “you know.”  When asked what that is, he says, “THE DOORS. THE DOORS.”

I know that everything will be ok, but I hate to see my boy hurt and scared.  Right now he is very scared.  Tomorrow morning will not be any easier.  There is a light at the end of the tunnel.  A few days of difficulty and road will become better.  But getting there is hell.

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Today Ben goes in for pre-op.  It is 5:00am.  If you know me at all, I don’t do 5:00am well.  There is no coffee on board yet.  It is still brewing.  We are trying to get some things done this morning before we leave.  Aunt Debra and Gordon picked up the girls yesterday to take to her house, and I think they settled in ok.  Aunt Debra said that there wasn’t too much drama.  Something about a temporarily lost new princess tootbrush and no air for the air mattress (that Ainsley insisted on sleeping on!  Despite the fact that she had a bed). That’s it.  Not too bad.

Now it is time to grab Ben and his constant medical buddy George (a stuffed monkey).  And then we are off for a day of paperwork and labtests.  Yeah . . . . .

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Ben and Daddy are going on an adventure today!  Tomorrow we leave at 6:30am to go spend the day at the hospital for pre-op.  Boring!  I can only imagine all of the paperwork that will be filled out tomorrow.  “What? You need my left arm in order to perform the operation? Oh, and after the hospital stay is over I’ll have to give you my first-born child to cover the rest of the costs?”  Yuck!  Ben’s last day of school was Friday.  He is spending this morning sleeping in and eating a hearty breakfast. But . . .

Daddy and Ben are going flying the afternoon.  Flying in an airplane? Yes.  A very nice gentleman in our church is taking Ben flying in his airplane today.  What a kind gift for our family.  Today is our last day with our BenBen before life becomes really stressful and this is a fabulous way for Ben to have a great and restful day.  Thank you, Mr. Stanley, for this adventure!  We will hopefully have pictures later today to mark today’s occasion.

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Chris and I gave blood today.  We are doing a directed donation for BenBen.  Our blood will be processed and ready for delivery in the operating room.  Chris and I are both A+, and Ben has to have A+ blood.  I can’t take the surgery for him, but I can give a pint of blood.  Having never given blood before, I squeezed the ball too quickly and donated all of the blood in about 2 minutes.  I was feeling really good until the needle was out.  Then after about 30 seconds I thought I was going to pass out.  Chris noticed while waiting in the recovery area.  He asked someone to help me.  Darn.  I thought that having given birth to three children that those kind of things wouldn’t happen to me.  The good news is that Chris and I made it home in one piece and that we are about to sit down to dinner with the whole family.  Thanks for everyone’s prayers.  They are all truly appreciated.  Now . . . on to Wednesday!

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