Tears, Fears and Miracles Friday 11th March 2011

We have had the worst time that we have ever had since being in Bristol.That seems like an overstatement seeing as we have been through so much but we have had to deal with the potential loss of Benjamin on Friday, his unexpected life saving operation on Friday, an unexpected second open heart surgery on Saturday and a deadline of 11am on Monday morning. If he didn't start to show improvements by 12.00 he never would and again we may have being saying goodbye Monday afternoon.

Let me explain......
After his successful operation on Friday we knew he had to go back to the cath lab on Saturday to have his stents re evaluated and when we got the call he was back we were told that he had another open heart surgery. They tried to access his femoral arteries but they were so blocked it was impossible so they opened his chest again. They managed to achieve their goals and brought him back again.
But he was really really poorly.

Sunday was a day of rest and tweaking and preparation for Monday morning. He is doing well and there is improvements on echos and x-rays.

Monday- The day from hell

Benjamin looks so healthy. The fact that his pulmonary arteries are able to do there job now and achieve a good flow of blood is making his colour look great. He looks beautiful!  When we arrive they had already started weaning the echo machine, the bed was surrounded. There were so many familiar faces ad that was very comforting. Dianne was with us most of the morning and kept relaying information to keep us up to date.
I sat with her and mom in the parents quiet room and off loaded all my fears for now, for the future and how I was going to cope with all his needs , Justice needs and try and have a normal family life. Benjamin will have alot more restrictions in his life due to the complex issues he has had and will have but Dianne thinks that we are strong people and will cope fantastic and be great parents.
Ian Jenkins and Dc Stoica came into let let us know that there were issues. Ian laid it all out. Benjamin was off the machine and he now had to start to improve and his body had to start to take over. They were going to assess him in an hour and make the decision on what to do next. They saw no advantages with reattaching him to the echmo machine if he didn't cope well. They had to take the canular out of his heart as it was doing all the work and if it was left in, his heart would overload trying to work around it.
If his body didn't take over and they weren't putting the echmo machine back on, he would die.
There were no words to say after that. I just looked at the floor and Dave went quiet, as did mom.
They let us sit thee for a minute and I asked how he was doing at the moment and he was doing ok, so we just have to pray.
That wait for 11.00 was the slowest Ive ever since a clock tick round.
At 11.30 they shut the unit down to remove the canular and reattach all his pipes and valves.

He did it though! His heart kicked in, his Blood pressure was good, his blood gases were good, and he was still looking good. The next 24 hours are crucial as he is still critical.

NO body can believe what he has achieved. Even his surgeon ( who is amazing) came by and was speechless that he was off the machine and doing well. He told us that he honestly didn't have much hope and that we really had a strong boy. What we have is a miracle and what they have all done is a miracle.

Dad arrived today and went to see Benjamin and held me in the unit. I feel so over whelmed and exhausted.I want to lay with Benjamin and hold his hand while I sleep. Hes in a big bed as he had so many tubes, Inatropes, Lines and machinery attached to him, a cot was impossible.