We were really blown away by the prayers and support for Addison yesterday. It is amazing to see how Facebook can be used to spread prayer requests and enable you to feel less isolated and alone when you are going through something like this. I can't imagine doing this 10 years ago without text messaging and social media- having people check on us and communicate with us all day made the day so much more bearable.
Surgery days are long, especially with afternoon surgeries. Addie was feeling fine yesterday morning and enjoyed visiting with her nurses and playing with her toys. It's always sad for me the few hours before surgery watching her feeling good, knowing that she'll be coming back in a totally different state. Surgery seems to inevitably involve a big step back in order to move forward. So I spend the day kinda dreading that. And of course the nerves of surgery and waiting to be taken back, never knowing exactly when it will be all make for a stressful day. I usually just talk really fast and pace a lot all day which adds to my exhaustion by nighttime!
They took Addie back around 130pm and had her under and ready to start around 230. Around 330, a nurse came in and was like the surgeon would like to see you on the second floor in the post op area. So my mom and i had to head down and we were trying to be like 'i'm sure it's fine and he just wants to tell us himself' but it was crazy stressful. AND we get there and he doesn't come out for like 5 minutes (which felt like 5 hours). But as soon as he walks through, he is smiling and his opening line is 'I love it when I'm right!' The surgeon had been very optimistic for the surgery all along so of course we knew this was fantastic news.
He showed us pictures and tried to explain and it's quite confusing. But basically some of Addie's lymphatic vessels sitting on top of her liver were dilating and pulling dialysate into her chest cavity. There was no hole or tear, just misbehaving vessels. He has seen this in two adult patients and there is a handful of cases reported in literature in adult dialysis patients. There has NEVER been a reported case of a child on dialysis having this complication. We were very blessed that the surgeon happened to have seen it twice before and identified the problem. (and btw, Addie will now be written up in all the medical journals as the first baby to have this happen!) So he burned off those vessels and then basically stapled her lung around them so they couldn't grow. I may upload the pic at some point but basically Addie has 4 metal staples in her lung now. He also scraped her lung with sandpaper to force it to scar and heal and stick to her diaphragm to remove any chance of new vessels forming. I don't think I've explained it very well because I don't understand it overly well myself. But basically the place where the fluid was entering should be fixed but Addie did have her lung stapled and also scraped with sandpaper so as I'm sure you can imagine, she's in quite a lot of discomfort and pain today.
She came back still on the ventilator from heavy sedation. It was a crazy night in the PICU as four kids with gun shot wounds were being lifelined in so there was a lot of debate about whether they should even try to extubate her with all the confusion going on or just sedate her and wait. In the end, she was too awake and frustrated to stay on the ventilator so they took her breathing tube out around 8pm. She's done pretty well with that and her oxygen levels are staying up without much support from a canula. Unfortunately her pain management wasn't handled very well and we had to fight to get her tylenol and she spent the night in a fair amount of discomfort. Her kidney doctors and nurses arrived this morning most frustrated with how the pain aspect was handled and got her some good drugs. So she's finally relaxed now and is asleep.
She will take another couple of days to recover from surgery and will hopefully start feeling better by the end of the weekend. Because we are trying to avoid hemodialysis but also don't want to put any added pressure on her chest by filling her abdomen with large amounts of fluid, we're basically doing very basic low volume dialysis starting tonight. She's been off dialysis since yesterday and isn't allowed to eat as a result. Tonight we'll do some very gentle easy dialysis- way too basic for her machine- so that we can start to give her some food. Although we expect the dialysis to go well, we will all be nervous and praying for it to be successful tonight. Over the next 10 days we will keep her on pretty gentle dialysis meaning she'll need to be in the hospital since her home machine cannot do that. At some point, we will pull her chest tube when it stops draining. It's still draining blood from the surgery right now. Since she has a chest tube and is requiring manual dialysis, she'll be in the PICU for the next week or two. She will presumably have a few days in intermediate care before going home. We don't want to rush but of course are praying for a safe but soon return home.
So we're looking at a reasonable hospital stay but assuming all goes as we think it will, she should go home without any lasting implications for transplant which is really the key. I will continue to move forward with my donor testing which is planned for Dec 20 and by the time I get my approval, she should be fully recovered and we won't have even really suffered a delay. So the fact that we were able to fix the problem and can ensure fluid does not end up in her chest and have managed to do so without hemodialysis and without jeopardizing a transplant early next year is a wonderful miracle and the best outcome we could have hoped for in such a difficult situation.
Al and Max are coming up today and we are very excited to see our boys and to spend the afternoon all together. We would love continued prayers that Addie would not be in pain, that she would heal quickly and tolerate her dialysis. As well as for Al and I as we handle one child at home and one child in the hospital the next couple of weeks. I have to go back to work next week so we'll be relying on my mom and some friends to figure it out. It'll be a difficult couple of weeks so please do keep us all in your prayers.