So on Sunday I noticed that Addie was grunting while she was playing. I always tread this fine line between worrying too much and letting everything concern me and ignoring things because I don't want there to be a problem. So I'm having this whole debate with myself- is she really grunting? Is she just frustrated, constipated, teething, over tired? Now grunting is a huge deal with Addie because it was her first and most telling symptom when she was in congestive heart failure in July. And cardiology told us, grunting is not a good sign.
So I did what any modern age mom would do, I recorded her grunting on my iPhone and sent it to her dialysis nurse and doctor (see iPhones save lives- we should so be in an Apple ad). They thought it most likely to be fluid overload so we put her on some high sugar dialysis and watched her blood pressures and vitals that night. The plan was to bring her in the next day when Dr S was there and could see her and avoid a night in the ER off dialysis. When I saw her before going to work yesterday morning, she was asleep so she seemed fine. I spoke to Al at around 11 though and he said she was grunting still and looking pale and I knew she wasn't good then. My mom picked her up and took her in to the hospital as planned.
As soon as Julie and Dr S saw her, they knew something was wrong. They checked her oxygen level which was around 85 which is lower than it should be, without being critically low. They did a chest X ray and her right lung was surrounded my fluid, basically causing it to not expand. And unlike kidneys where one will do, you really need two lungs! So she was in respiratory distress from fluid surrounding her lung. They put her on oxygen and admitted her to the ICU. All while I was teaching my students about DNA. If I had known how sick she was, I would have taken the day off. But it's a really hard decision for me because I don't have endless days, I am the main worker for our family and I am planning on being out for a kidney transplant later in the school year. So she was with her nana which was just fine. But as soon as I finished teaching, Dr S called me and told me how sick she was. And I had to get there as soon as I could. My friend Shannon drove me in thankfully since I was such a nervous wreck and Eve went to get clothes for Addie and me and brought them up. I was so thankful for their help.
They put a chest tube in Addie which goes all the way into her lung cavity and then they pulled out fluid. They pulled almost 400mL of fluid out of her chest cavity which would be like if you or I has a couple of liters of fluid pushing down on our lungs. No wonder she was grunting! It's actually amazing her body was coping as well as it was in those conditions. She is an incredibly strong little girl.
Everyone- including myself- assumed it was related to her cardio history and we feared that she was back in congestive heart failure. Her heart rate was high, she was requiring a fair amount of oxygen from her canula and looked really sick. It was terrifying. Addie's heart failure episode was the very scariest thing we dealt with in the NICU and we thought it was all about to happen again. I just kept sayin over and over to myself that we got through it once, we'll get through it again. But we also all knew that if she was in congestive heart failure the chances of her transplanting any time soon were out the window.
So it's hard to say if it was relief or fear or disappointment that was more prominent when they pulled fluid and realized almost immediately that is was dialysis fluid. We put dialysis fluid into Addie's abdomen every day and her abdomen is surrounded by a membrane and separated by the diaphragm. Dialysis fluid is NOT meant to end up in your chest cavity. Our dialysis nurse and doctor had never seen a patient with dialysis fluid in their chest. There are complications we know to expect- infections, high blood pressure, anemia, electrolite imbalances. No one ever said anything about dialysate in her chest. Yet there it was- 400mL of it.
While there was some relief that it did not seem to be congestive heart failure (or RSV or any of the other reasonably frightening hypotheses), that quickly went away because we were now in a very serious situation. We can't keep filling Addie up with dialysis now that we know it's leaking into her chest (and we really don't know why-maybe related to lymphatic tissue? maybe a tear or hole?) But Addie has no kidneys and she must be on dialysis. So the dreaded H word came into play- hemodialysis.
There are two types of dialysis- Addie and Max do peritoneal dialysis which uses the placement of fluid in the abdomen to pull water and clear toxins without removing the blood. In hemodialysis, blood itself it removed from the patient and run through a machine that removes excess water and toxins. Seriously if you heard the way people talk about hemodialysis, you would think we were talking about waterboarding. If my life were a TV show, I would have to have an animated black cloud of doom come out every time anyone said the word hemo. The way I understand it is that if you're an adult or even a child, hemodialysis is fine because you have a reasonably large blood volume and you can handle a significant amount of blood being out of your body and in a machine at any time. You'll lose some blood from hemodialysis but again, you've got some to spare. If you are a baby on the other hand, you don't have a lot of blood. So to remove a decent percent of it at any given time and have it running through a machine is very dangerous. The blood loss with each treatment is significant as well. So it's not a good treatment for babies. The way around the blood loss and out of body blood filtering is to give blood transfusions while undergoing dialysis. This helps manage blood volumes.
The problem is that the more blood you expose someone to, the harder it makes to find a compatible donor match for transplant. There a whole long explanation behind that but you'll just have to take my word for it. But 4 times a week blood transfusions are a surefire way to make transplant exceedingly difficult. And certainly a way to make my kidney much more likely to not be compatible. And so while we will do hemodialysis if it comes to it and be grateful that the option is there, it will be a very difficult turn of events for sweet Addie with a lot of short and long term implications.
So that's our dilemma. Need dialysis. Can't let fluid seep into her lungs. Don't want to put her through the risks of blood dialysis. It's a difficult situation we are in.
We have a plan, some hope, though. The cardiovascular surgeon is going to insert a scope or camera into Addie's chest tomorrow and run a dialysis cycle and observe where the water is coming up. He is then going to attempt to essentially repair this by stretching her lung out and scarring it to her diaphragm. Sounds weird to me, too. But it is supposed to basically remove the space where fluid is accumulating. IF it does, we could leave her on her peritoneal dialysis on small volumes that put less pressure on her body (which must be done in the hospital) for a few days and make sure she seems healed and head back to her home dialysis machine.
And if not, well Dr S says we will cross that bridge when we get there but it will presumably involve the black cloud of hemodialysis and a lengthy, as in many weeks, hospital stay. But we are praying we won't have to face that bridge. We are praying, once again, for God to heal Addie and work a miracle in her body and that this surgery will be effective.
For tonight, she's back on her peritoneal dialysis on low volumes and the chest tube is in place to drain out anything that does get in her chest. Last cycle we put 150mL in her belly and we got 4 out of her chest tube. It's obviously not all going there but were it to accumulate she'd be in trouble again. But she's ok tonight. She is tired but she's breathing well now that we removed the fluid, not requiring any oxygen and charming everyone. She's given some nice smiles and we have been so blessed to see some our our NICU friends and felt very supported today.
And tomorrow around 2 we will have surgery. And we could use all the prayers we can get. And all the love and thoughts as well. Surgery is always stressful but it's particularly hard when a lot hinges on an outcome that we really don't know what to expect from. And it's my first surgery without Al here since sweet Max will be on dialysis at home and so Al will be taking care of him. I got to go see them this afternoon and really enjoyed some time with my boys while my mom and mrs becky played with addie here.
We're just going to pray and believe for a miracle for Addie. So please join us in praying for sweet Addie. She's the most delightful, beautiful and loved little girl and we hate to see her go through a really rough few months when we really are just a few steps away from transplant otherwise. So if you have relatives, friends, co workers, random people you see tomorrow that pray, please ask them to pray for Addie tomorrow afternoon. And please if you get a chance, let us know you are praying for her or sending her virtual hugs and love via facebook or text or email (email@example.com). It will give us encouragement and strength as we wait to know there are lots of people praying for her.
My favorite picture of my princess