Monday, December 5, 2011

Waiting and Seeing

I've posted on Facebook some updates but I thought I'd take a moment and try to explain what is going on- or more like what isn't going on- at the moment.... What isn't going on is dialysis. We've been off dialysis for 48 hours so we have had a pretty uneventful couple of days. Today she'll only be on dialysis for 6 hours to pull some wastes and toxins from her body. Because nothing is going out, very little can go in. So she is on very restricted feeds and hungry so that is a shame. But we are hoping that this time of limited dialysis will be what her body needs to heal and will enable us to avoid further procedures and problems. I will try to explain what has happened in the past few days that has slowed down Addie's recovery...

In order for the surgery to have been laproscopic or minimally invasive, it was done laproscopically and when the area where the leak was coming up was found, the surgeon scraped the tissue and stapled in. The idea is that the tissue will scar together to close the leak. There are no actual stitches holding it together. In order for him to have stitched her up, he would have had to do a much bigger more invasive surgery which we were hoping to avoid. We knew healing would not be immediate but we were hoping Addie would tolerate dialysis a little better than she did though as large volumes of her dialysis did enter her chest after surgery. This poses problems for healing because the tissue isn't scarring with so much fluid flushing through it all the time. We were hoping for far less water in her chest and a quicker recovery.

But the surgeons and doctors do not want us to lose hope yet. So they have tried giving Addie days off dialysis by restricting her food. Basically This is a temporary measure as without kidneys, Addie will need some dialysis again today even with restricted feeds. But we will try to see how little dialysis we can get away with giving her this week and see if we can get her chest to heal.

If it still will not scar and heal, we have two different options. One option is that we start her on hemodialysis. This will involve surgically placing a port or a catheter and then allows us to give her 'blood' dialysis without putting any fluid in her body. Keeping her chest dry for 2 weeks could allow the scarring to occur. Then we'd try her peritoneal dialysis again and hope and pray she doesn't leak this time. The other plan is to take her back to surgery and actually do a more invasive open chest surgery with a proper big incision and they would actually stitch the area closed and sew her lung to her diaphragm to remove space for fluid to accumulate. This would be a big surgery for Addie but the surgeon feels it would completely fix the problem. She'd need a couple days off dialysis again but hopefully could then go back to her PD without it leaking as we've sealed it this time. The surgeon is a proponent of the open her back up plan. The nephrologists were leaning more towards the putting her on hemodialysis plan. Both plans have risks so it's not easy to know what is best for her both now and as a hopeful transplant candidate. So I am not sure what they'll end up doing if we reach that poing. We are of course praying we won't have to face that decision and that she has healed over the past couple of days.

Waiting is really difficult. It is hard not knowing right now if Addie will be better and coming home next week or if we'll be starting a whole new scary process. We are praying and hoping for the very best outcome but at the same time preparing ourselves for the other options that have been presented to us. I am back at work for the next few days while we wait to see what the next couple of weeks have in store. With limited leave time and a whole bunch of grading piling up, I'm trying to use these days in between to get on top of some of my work. Addie is feeling much better now. Surgery is really hard on babies so Thurs-Sat were pretty rough. She also had some issues with morphine on Friday that got her banned from morphine for life. So it was really an extremely difficult week. But she's feeling much more like herself now. She's got her nana and plenty of nurses taking care of her today while I am at work but I still hate being away from her. I'm not sure there's any right way to balance a full time job, a baby at home who misses his mommy (and a hubby who misses his wife) and a baby in the ICU who needs me the most. I can't be in three places at once and so I'm always struggling with not being able to be in the other 2 places. Right now I'm trying to prioritize Addie and just do as much as I can still for work and my boys. Max misses me and Addie but has a very special bond with his Daddy and seems very happy. He has like 4 specialists appointments in the next week so while all this is going on with Addie, the world doesn't stop spinning so Al will be taking Max to his appointments. Some of Max's appointments are diagnostic, looking for potential concerns, so it's kinda difficult to move forward in that area when all this is going on with Addie.

We're hanging in there. We laugh and smile and ooh and aah over the adorableness of the babies. We manage to find joy amongst it all. After all, we are hospital veterans and know you have to find the things to smile and laugh about or you will go crazy! We've had visitors, good food, encouragement and tons of prayers and those are all helping as we wait and see what God has in store next for our family. We know that there will be days like these- it comes with the territory of having too very medically complex children- and we know that they will pass and there will be happy easy days at home. Our life is going to eventful and we're just all learning how to ride this rollercoaster. And remembering to be grateful for the blessings. And for today she is alive, she is safe at the hospital, she is smiling and she is so very loved by us and by her nurses and doctors. That's actually a lot to be grateful for.

I feel like a broken record asking for prayer all the time! I can't wait for this issue to pass and be back to happy facebook and blog posts. In the meantime, however, please do continue to pray for us. We cherish the support and encouragement and look forward to sharing our fabulous days with you when this has passed and addie is home again. And we keep all of you in our thoughts and prayers and anticipate the day when we can give back to everyone who has given so much to us.

Cutest Medical Mystery Ever

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