What Happened. And we're HOME!
Remember that one time when I told you that this ain't my first rodeo and I was not getting my hopes up about a Thursday or Friday discharge? Well, there's a reason for that. So much has happened since we met here in this little corner of the paper...
Last Tuesday, I noticed that Blake's urine output wasn't as high as normal. Not once, but twice I had our nurse page urology for them to come and look at Blake at to make sure that the catheterizing was going ok and I wasn't doing something wrong. The first time I got told everything was fine. The second time (four hours later or so), the urology nurse said the staff urologist needed to be page. From there, it was crazy town for awhile.
The urologist thought that something was indeed off kilter and “because it was Blake” (that's a coined term at UIHC by the way) we were going to have the “million dollar work-up done.” That included labs, blood cultures, urine cultures and an ultrasound of his kidney and abdomen. Whirlwind.
Labs were drawn and they carted us off for the ultrasound. Now, keep in mind that Blake was acting completely fine. Actually, he was smiling with the doctors and nurses and that never happens. We got to the ultrasound and I was trying to get any indication of if anything was wrong. I swear I should know how to read these things by now, Blake has had enough of them!
We got back and the nephrologists (kidney docs) were waiting for us. They said his labs were all wonky and they didn't believe them and they were going to redraw them. Redraw number two showed the same results. The doctors were scratching their heads that anything was wrong since Blake looked so good.
The numbers that were way off were his kidney numbers – his creatinine (measure of kidney function), his BUN (measure of how the kidney is filtering things), his potassium (dangerously high and can cause heart problems) and his sodium levels.
The night was a nightmare. They were trying to pull off potassium by making him pee a lot. They were giving him huge amounts of fluid to try to get him to pee. About 3:30 AM I felt a tap on my shoulder. It was the nurse saying, “The doctor's on the phone and wants to talk to you.”
Hospitals 101: that's never a good sign. The doctor said that because his blood pressures were pretty low (not overly low, but Blake low) and he wasn't peeing like they wanted. They were afraid his kidney was going into rejection. REJECTION. After everything we've been through, I had to hear that. They were moving us up to the PICU.
Sick-to-my stomach and shaking, I called Aaron and told him the news. It was all I could do to hold myself together. I also called Steph, our donor, because I thought she deserved to know.
After a move to the PICU, they ordered Blake's second EKG in the last six hours and just kept an eye on him. Gradually he started to pee a little bit more, but not a lot.
Aaron came down in the morning to be with us, which was needed. That emotional load of remembering everything they tell you was shared instead of it all being left up to me. Blake was extra happy to see him. Blake still, through it all, remained happy. The PICU nurses actually loved seeing him like that.
The docs came to tell me they think they know what happened: they tapered his steroid dose too quickly, which messed with his sodium levels (he was peeing off too much of it). Lack of sodium dropped his blood pressure, which his kidney didn't like and in turn wasn't producing the urine that it needed to. Clear as mud?! Yeah, I know, it's confusing.
Anyway, on Thursday around supper time we moved back to the regular floor as things were getting back to normal. We were told possible discharge on Monday. Over the weekend, his blood pressures were super high and I panicked that we wouldn't be able to go home. His kidney numbers went up again a little bit. Enter me, crying in the bathroom after hearing the results. I just wanted us to go home so badly. I wanted Blake to catch a break.
The transplant surgeon kind of talked our kidney doc into letting us go home. Which I appreciated. I heard her talking on the phone, “I wouldn't advocate for just any family. Jamie knows what's going on and she will call if something is wrong.”
We were then told at 9:00 AM on Monday we were being discharged. At 6:10 PM that night, we were finally leaving the parking ramp. It was a long process to get out of there, but such a great feeling!
The way home wasn't without its excitement. I got a flat tire just west of Cedar Rapids. Luckily, Brad Sara and Emily Morgan, who moved from State Center over that direction, came to my rescue. Once Brad got my tire changed I went to start my car and....it was dead. Battery was toast. So, we had to deal with that. Eventually, driving 50 mph, Blake and I pulled into the driveway at 9:15 PM.
WHEW. Nothing is ever easy is it?! I could not make this stuff up. I wouldn't want to.
I cannot tell you how amazing it was to sleep in my own bed with my own blankets and my own pillows. Ahhhh...bliss!!
We have a lot going on with Blake at home, which I'll tell you more about next week. I know this is getting long. Thank you again for all of your love, support and constant encouragement. I'm just praying we get to stay home again for a long, long time, but that's just the way I see it.