We got through the surgery. There is a lot to be said about that, it's a triumph to be sure and we feel like we have scaled a mountain and are now on the other side. When we handed Josh to the OR team I immediately had two lines of a song going through my head, 'this is where the healing begins, this is where the healing starts' complete with the tune and everything. I just assumed it was a particular song that I have been listening to a lot lately and I was too tired to think much of it. However, this morning I still couldn't knock those two lines out of my head and I began to wonder what the other lyrics were so I turned to my phone and searched for the song I thought it was... but it wasn't that song. In fact it's not a song I own, and if I am honest I don't know that I have heard it before... yet, when I googled that song I found that there is indeed a song with those two lines, further, when I played it on youtube, it was the same tune. Funny that it doesn't say ' he is healed..' just 'this is where the healing BEGINS, this is where the healing STARTS'....
(the formatting is odd... having trouble with the ipad and too zonked to sort it out... sorry)
The surgery for the most part went well, he had the two valves replaced and there is NO LEAKS... he's never had that in his life before so I cant tell you how happy that makes me. They were also able to avoid the shunt to which I am most grateful. His pressure is good too and we found out that the valves they used are large enough now that they may be able to replace them in the catheterization lab if they reject; there is very good reason to hope that he may not need to see the inside of an OR for a long time (for open heart at least). All of this is good. All of this brings me great peace and comfort, and hope which is in short supply sometimes.
the actual recovery process isn't as great news as all the above. He had a collapsed lung, he is in a great deal of pain and even in his sleep he moans in pain. His breathing is shallow which is making him 'desat' *his O2 saturation levels get too low when he is taken of O2. He can't keep much down and spent all of last night throwing up, and again lost everything he put in. As I write this I am going on 19 hours with no sleep, and only 8 hours of sleep since Wednesday. Tired is an understatement. My plan, tonight, was to sleep for a bit right after his pain meds were given but his monitors and ventilator are alarming and thumping and his moaning... he just keeps moaning. There is nothing worse than not being able to help your child through this kind of pain. Pain so bad that he can't breathe, pain so bad that he hyperventilates and vomits. He's getting strong meds, but the older these kids are, the more surgeries they have, the more pain there is. It just seems so wrong and so unfair.
However, and this is a big however... This is where the healing begins, not ends. This is where the healing starts, not finishes. We have a road to travel, every day he will get a little bit stronger, he will keep fighting (he is truly a tough little fighter - even pulled out his own NG tube this morning and walked through his pain to take himself to the bathroom rather than pee in a diaper). There will be less pain every day, more sleep coming in the weeks ahead. I know you are all praying, we appreciate it and ask that you don't stop yet. We are exhausted and Josh needs us. Please pray that we find strength and rest even if we don't find sleep. Pray that the pain subsides and that Josh too can find rest, but more, that he finds hope, peace and a deeper knowledge of his own budding faith.
Today, as we were about to step out for dinner Josh was awake and needing a drink. I gave him a sip of water and told him I loved him, was proud of him and that there were people everywhere praying for him to feel better quickly. He looked up and said 'I know' so I asked 'what do you know,? That I love you or that people are praying?' and he said "I know that people are praying'. Then a friend came by, she wore her red shirt, Josh said 'She's praying for me'.
Will sign off for tonight... thanks for all the support. Will do my best to keep this updated as time allows.