Photographs by Laurie @ Horizons Photography

September 12, 2011

The journey home again

The emotional roller coaster of the last few days has been intense but with relief I am finally able to Blog and let you know that we are home. Josh went in on Thursday for his surgery, it took 6 hours. The managed to fix the T-valve by adding some human tissue, and they once again replaced the Pulmonary valve which it turns out had started to reject and was shriveling. When I asked the doctor why this happened and if it would happen again he simply shrugged, it seems that it's so rare that they have no real data on it. We could have anywhere from 6 months to 7 years before another open heart surgery is needed, and we should know within the next few months if he will need the open chest shunt surgery. It wasn't the best news, nor was it the worst that we have ever faced. However, seeing Josh was fantastic. The night of the surgery was hard, he woke a few times, crying with no sound, calling Mummy but with no voice, and silent tears dripping down his cheeks. They took out his breathing tube and he went to sleep, and remained that way for the night. Day two we were moved quickly from CCCU (Cardiac Critical Care Unit) to Step down (leaving a one to one care ration and going to a two to one care ratio). Once in step down the recovery process began and it's not been very fun but it's been better than any other surgery before it. He was sick to his stomach for the first day and kept on some very strong pain killers which helped but day two he was moved to slightly less medication and made to move around to help his lungs clear out any fluid. This caused a great amount of pain and for the last few days he has been angry, tired (he slept a total of 12 hours in two days) and the sleep he did get was restless, with moans and grunts and crying. Last night was possibly the worst as his anger and frustration was taken out on me and his eyes held betrayal when he looked at me. Nothing I did could comfort him and he kept telling me to go away. Josh and I have always been very close, it was difficult for me to not have a way to help him. Hearing your child tell you to go away when he needs you most is so incredibly painful. The nurse finally came at midnight and found me crying in my room, Josh screaming at me, she offered to sit with him while I went for a walk and I was only too happy to leave. Josh much have been happy for me to go too because by the time I came back just ten minutes later he was asleep. The night after that was filled with a lot of moans, a lot of grunts, and a number of wakeful spells. Nothing I could do would help him.

He had an ECHO this morning and so far the leak in the T valve seems much better and the pulmonary is holding well. We are again at a place where we need to wait and see, not just to know if he will reject the pulmonary valve but also to know if he will need the shunt. This you can pray for as we just don't want to have another surgery! His lungs have fluid on them so we will need another chest Xray on Monday a long with another ECHO.

The good news, and there is good news, is that we are home! We are home and already Josh seems happier. He is sleeping as I write this, and he wanted to play with me today so I am guessing he is on his way to forgiving me. I was lying down on the couch, eyes closed, desperately trying to rest (I had much less sleep than he did), and he climbed up on my shoulder, lay down beside me and started using his doctor kit to take my vitals. Payback I am sure for the countless times he was woken for just this reason.  He is a warrior, a hero, a miracle and no matter how angry he is with me I thank God that we live in a place where this was possible, where we could have this needed surgery without needing to raise the funds and stress the money. I am thankful that we had such an incredible surgeon who was able to fix the T-valve rather than replace it, and I am thankful for all the thousands of prayers that went up on behalf of Josh and our family, for the friends who went above and beyond to make this as painless as possible.

It was time to say good night, we have a road to travel and I am weary.