The Puddles

We just met with Ben’s surgeon, Dr Fraser. After nearly 12 hours, Ben is finally done with surgery. 

He said when they looked at his heart the aortic valve had drawn up on itself and was not repairable. He said that the heart wall had thickened significantly (yuck) but that there was not much to the sub aortic membrane (yeah).  He also said it took a while to get to the heart due to all of the scar tissue that he had to cut through to get to the heart to look at it. 

He said that the best option was the Ross procedure. He cut out the aortic valve and widened the area for the new valve to be placed. He then removed the pulmonary valve which is tricky due to its placement in the heart. He put the pulmonary valve in place of the aortic valve and then used a 21mm donor valve to replace the pulmonary valve. He said the 21 mm valve is an adult sized valve. 

Ben bled significantly. They went through all of the blood products that we donated and a lot more. Dr. Fraser felt the bleeding was mainly due to all of the stitches that they placed today. Ben will be kept sedated and intubated all night in order to keep his blood pressure stable. Hopefully they will take him off of the vent in the morning. But we will wait and see. 

The best news of the day is that Dr. Fraser expects Ben to get 10 years out of this repair!!!!!! Praise God!! We had expected to be doing this again in just a few years. That was the best news ever! We had totally not expected it, so we were overjoyed. 

So the most difficult part is behind us but we still have a ways to go. We ask that you keep Ben in your prayers and thank God for the surgeons and medical staff at Texas Children’s hospital.  

  Ben is off of the heart lung bypass machine. The doctors are closing him up right now. 

They have finished the repairs and are now trying to get him off the heart lung bypass machine. 

The latest update from the doctor is that the surgeon has decided to do the Ross procedure on Ben because he was unable to repair the valve. 

At 2:30, the nurse is telling us that the process is going well and that they are 40% finished. They have been at this since 7:00am. I pray for the medical staff that they keep their strength during this long day. 

  We are an hour early to surgery this morning. A little snuggle time is called for while we wait to go to the pre-op room.  

 George is packed and ready for his next medical adventure  with Ben. The stories that George could tell . . . 

We are as ready as we are going to be. Ben is so brave. Eventhough he is ready to face  this surgery, he is so scared.  He is scared of going to sleep and never waking up again. And more importantly he is frightened of doing this alone. He knows that all of the people he loves are there in spirit supporting him, but as he pointed out, “none of them are there when I am being rolled into the surgery room by myself and have to make that final step from the gurney to the surgery bed.” I can imagine how frightening that would be for an adult but for an eleven year old boy who is not even allowed to ride his bike on the street in front of our house,  this has to be terrifying. 

Ben is truly the bravest person I know. And he and his trusty sidekick George are ready to face what is coming tomorrow. 

  Today we are doing a lot waiting between all of the visits from various departments who are coming to check on Ben and have me sign a million forms.  But the reward is getting to lunch at his favorite TCH restaurant.  And of course the other reward is endless hours of playing Minecraft. 

Poor Chris has been confined to a chair for so days. We had been invited to a surprise birthday party and was unsure if we would be able to attend, but by the time I had come back from dropping Madie off at church (the only puddle who wanted to attend today. Ainsley said she only preferred to hear sermons from Daddy.) Chris was really ready to hit the road.  I have been able to run a few errands but not Chris.

So we left as soon as we were able to collect ourselves together. Chris said he thought we would only able able to stay for about thirty minutes, but true to his nature we stayed for three hours! As exhausted as I was,  I enjoyed being with people again too outside of my house or Chris’ hospital room. 

We had some friends come over the night before and bring us dinner. Chris was exhausted by the end of the night but you could tell by the smile on his face that he was happy. He is certainly an extrovert who gets his energy from being with people!

As a side note, it had been fun to hear Chris piece together the story of the accident. He really doesnt remember much of anything. Pain will do that to you.

His energy is getting better, but every time he goes out his arm and hand swell up. So we have to do it all in spurts.  But the kids really enjoyed themselves too.

Then we returned home for a family movie night. Guardians of the Galaxy was a delightful and fun movie! We all laughed hard. Now tomorrow we are off to visit family for another Christmas.

After the alarm went off this morning at 8:30 for the third time that day to remind me to wake up and give Chris his medicine. I decided to get up and run errands before everyone else woke up.

By the time I got home, the rest of the tribe was up and going. Ben had even made Chris coffee! Which was perfect because we immediately got into our working clothes and started to reclaim the house. It needed to happen badly!!

By the end of the day, this happened . . .

When Ben attempted to climb behind the couch to plug something in, his behind went through the window. So that added another dimension to our day. Off to store we go again.  I Cleaned up the broken glass and took all the shards that were left in the window. Madie patched the hole with plastic and duct tape. Now I just have to learn how to put a new pane of glass into the window. Nothing to it!!

Chris is chomping at the bit to help, but he is still in trouble from going to worship on Christmas eve so he is banned from helping. His hand is still twice the size it is suppose to be. But the puddles and I are managing. We will learn how to fix this too. At least we have the internet to learn how!