Harvesting Joy

Flexi-trach is in! As in, in Jameson's throat. And everyone loves it. Especially Jameson. And it is just in time since he is starting to have some awake periods. Not much yet but we are lightening sedation this week. It will take a full 8 days to wean off the pentabarb. He was up to 4 mcg/hr and they can knock off 0.5/day. He's now on methadone and we gan give him boluses of diluadid if he needs a little something something every once in a while. Hopefully the waking up of our comatose baby will go smoothly. The last time we switched everything up was a disaster but I'm hoping that now that his trach is finally healing well and more comfortable that he won't be in as much pain. He will still have loads of pain for a while- chest tubes are excruciating and I imagine a belly tube isn't much better.
Oh and speaking of that peritenial drain (aka belly tube), the nurses have had a hard time pulling fluid off so they put on a gravity drain so it can flow as needed. It is different than the chest tubes because there is no vacuum seal, no extra help. Just a tube with a urine bag at the bottom.
And speaking of urine -he has been a peeing machine. We are getting out good amounts; so much so that the bumex has been dialed back down. The stool is also on the move so J is doing well with removing the fluids, etc that need to go. He still has some cheeky jowls but the cankles aren't bad. And for the record, the cankles were never all that bad, but the word is way too fun to pass on... In just two days, he is down 1 kilo. Still has some to go to get to his normal weight, but this is a great start.
Still no change on the chyle output. I am trying my darndest to be patient but that one is difficult. I suppose as long as he is venting well and staying stable, I'm glad we have the time and happy to wait but at the same time, oh, it would be so sweet to see it go away and not come back. But we do have time right now. His lungs are happy; not happy like he can come off the vent happy, but he has been satting well. Today he has been down to 40% fiO2 and he was satting in the mid/high 90's. At one point when Little Man was telling him stories about crazy legomen getting eaten by sharks he actually got up to 98% satuation. I took a picture of the monitor to prove it but left the camera at the hospital. Patience isn't my virtue of choice, but I'm happy to wait and see as long as we are in this good place. I am learning a bittersweet benefit to the patience lesson; waiting is good because that means J is still here and in a critically stable place.
We had a really special visitor today. Very special. One of our intensivists introduced us to a healthy, beautiful, and vibrant teenage girl and her sweet father today. And it was so wonderful. Wonderful because she is beautiful. And vibrant. And healthy. And last year she was in the PICU with 6+ chest tubes and almost on ECMO. And not able to even speak. And she has lymphangiomatosis. And today she was here for a check up and xrays, etc to see how she is doing. But you don't need to see her bones and pleural spaces to see she is alive and well and thriving. She is a glorious miracle. The same miracle we are praying for. And while every case is so different with this nasty disease, it gave us another glimmer of hope. Some people do pull through the darkest times. Some people can survive. Miracles do happen.
And no matter what happens with us, no matter how this all turns out, please pray for a cure. Because we are just one family that you know of out there, struggling to understand, struggling to survive, struggling to hope. But there are many more out there fighting this daily battle and hoping for a miracle too. So in 6 months, and even in 6 years, please still think about J. But not just J. Think about this other beautiful, amazing young woman and countless other families who are losing their mothers and fathers and spouses and sons and daughters. Think about the families who have already had to say goodbye to their beloveds. And please, stop and say a prayer for peace and healing and for a cure.