All week I’d had an upset stomach. I’d written it off to stress, a little bug, and cafeteria food. I’d had nausea a couple of times but brushed it off. I hadn’t been drinking as much water as normal and figured that didn’t help how I was feeling either. My sister was here with Gage while we went out to dinner. And when we returned and we did meds (trust me, this is a process) with Gage I was surprised I wasn’t felling well.

I threw up.

I was in some pain, then got settled and went to sleep before 11:30pm. Imagine how shocked I was to wake up to a familiar pain from 2 years ago…

You know what I’m about to say, right?

A kidney stone. I called Julian to the hospital with clear instructions to bring my meds with him about 5:30am. By 6:20 I was in the E.R. of our local hospital. Four hours later I returned to Children’s Hospital having had confirmation that I had a stone in a not great place. Chances are that it will not move on it’s own so I will need a procedure to get it moving. Until I work out those details I will have some serious pain meds ready, drink plenty of water and hope.

We are the most kidney challenged family ever. Seriously.

Did you know it is daytime right now? Because it is. We’re looking outside from Gage’s new window. Granted, it’s to the top of another building and around us is concrete, but we were starved for natural light that we don’t care.

And hey! We can see the sky. That’s improvement.

Thanks ICU nurses and docs…for the wonderful care Gage received. Onward and upward. To the 4th floor.

We had thought Jody might be leaving the hospital today but it looks like she’s earned another day. She’s having some small complications from the surgery (I don’t think they are uncommon) so if you could say a prayer, chant something, light a candle or send a positive healing thought for her, I know she and her family would appreciate it. And I would too.

The doc is allowing us to be moved out of ICU today.

If they can find a bed. There is no room currently on the floor we need to go to, but since the ICU is full they want us out of there as badly as we want to leave.

It’ll be a win-win when we go.

In other news…Gage stood up unassisted today (while he was weighed). He was mad as a snake, but he stood up. When he sat down and I mentioned that it looked like it didn’t hurt so much, he smiled. Then quickly stopped when he realized I could see him.

Gage’s kidney is working great. We’re happy as can be about that so let me get that straight first so Grandma doesn’t worry.

It’s his blood pressure. It’s still high. It’s completely normal for BP to be high when you take an adult kidney and put it into a child and the body is flooded with fluids. But it’s supposed to come down and should have by now. All day they’ve tried to bring it down with his usual BP med and another one through his IV. Although it did make a small difference, it was not significant or for very long.

They had cut down on the fluids by half. Didn’t work. Tried the IV meds, didn’t work for long. So now they are going to try a drip IV med (can’t remember the name, sorry you nurses in the family!) that was ordered before shift change, which just happened.

The real anxiety comes from the fact that if the BP is a problem for any length tomorrow, we’ll be invited, in a loving voice from the docs, to stay in the ICU for at least another day. I’m bummed about that. I will know more hopefully during morning rounds by the nephrologist on duty.

I’m hopeful but not counting on it. And really, this is a good problem to have. The gently used kidney is working. Working very well inside my little boy.

Although it’s been hard to see Gage in pain, we’ve had a harder time being in the ICU with the other families. The ICU is not a happy place by nature of what it is…except in our case perhaps. We are the only family that is thankful to be here.

We’re the only ones grateful for the chance to see their child need the ICU. The other families that are here are here for tragic, sad reasons. We don’t belong here. We aren’t sad. We’re not in the same place they are when they hear a "Code Blue" on the speakers. We don’t need to run into the unit to see if it is our child, we know it’s not.

The hardest part of the ICU stay is feeling like we don’t belong. We certainly have contained our happiness while we’re near other families. We can’t know their suffering. Sure, we can know the tragic possibilities are there based the sheer magnitude of kidney transplant surgery and that gives us some window into their world, but we can’t really know. We’ve had years to prepare (as much as that is possible) for this scenario. Not so with many families here today.

I’m so thankful to be where we are today but I’m mindful of the many families that didn’t know last week that this was a reality.

And I’m sad for them. Really sad.  And then I learn Gage’s creatinine is 0.5…not just normal, but completely normal by medical standards. A pull in two directions at the same time.

Gage is doing pretty good, all things considered (I realize I say that a lot, but there are so many variables in his world that it seems okay to use regularly, like a tag line…Gage Roberts, Living Well, All Things Considered). For all day Wednesday he’d been resting in the same position, not wanting anyone to move him. We were able to adjust his bed up a bit to  help his lungs recover from the anesthesia so he wouldn’t need oxygen. He’d been in a contorted position all day with his neck angled to watch TV. His feet have been hanging off the bed outside of blankets and he didn’t want us to move him. It’s after 2:30am and my boy is wide awake. Smiling even. His nurse suggested we move him so he could watch Sco*by better and after we adjusted him and all of his wiring he said "Mommy, that didn’t hurt like I thought it would!" And he smiled. Genuinely smiled.

Progress.

Other news…I was able to have a nice visit with Jody. She had staff come in throughout our time together and I was so proud to say it was my son who had received her kidney and I was even prouder to say that her kidney was working great. She looked great. She asked if I had been crying. No, just tired I explained. Gage seems to be sleeping too much in the day and loving our awake time in the wee hours together with gusto. Lucky me. No, really, I mean lucky me. I love seeing my boy alert, smiling and taking ice chips, even at 2:30am. His teacher, Mrs. W, will be pleased to know that he announces what time it is several times during an hour. Then he’ll add: "It’s A.M. Mommy!" Umm, yes Gage it is…remember when we used to sleep in the a.m. hours?

Then: (post-transplant 1 hour)

Now: (27 hours post transplant)

And to make matters better, his 8:00pm Wednesday labs indicate the creatinine is remaining 0.6 with the BUN at 8.  We love us some single digits. The docs have declared we can step down labs and only do them every 12 hours through tomorrow, then maybe every 24 hours for the rest of our stay.

Gage’s gently used kidney is behaving nicely, thankyouverymuch.

The infamous tunnel where Julian spotted Jody’s kidney in a generic-looking rolling black canvas cooler. Julian did think to ask Dr. Steady Hands to pick up the pace, but thought twice.

After today’s rounds, Gage’s doctors believe he is doing better than expected. First…he looks good. Not bloated, his skin color is supurb, he’s resting well, he has not needed pain meds as often as previously planned for, and well, his kidney function is normal.

As in normal, normal. Not normal for a sick kid.

Normal for a healthy kid even. We’ve never seen numbers this low. Off to email these numbers to Dr. Wonderful, whose last email to me upon learning numbers from last night was "FANTASTIC!"

Creatitine 0.6, Bun 10.

More later…because Gage is sleeping now, which means I will be having a grand time at 3:00am while he is watching TV. 

Whew. That was some night. I never did get any real input as to what the ICU was like, so I don’t know what I was expecting, but whatever it was included much more sleep. Go ahead you post-transplant moms, mock me.

Here’s the low down for those following along at home…

• 4:30pmish – Transplant day, Gage is very upset. Says things like: "Don’t touch me!" "Don’t touch my bed!" "That Doctor who listened to my heart and did this is a meanie!" and one of the most telling: "Don’t even look at me! It hurts when you look at me!"
• Until 6:00pmish – we are in the room, Julian and I, just looking at our boy, then looking at each other. Our friend Tina visits, and in honor of her Birthday, gets to bring us dinner at a Children’s Hospital. We declare we are one fun couple. We have to be out of the room until 8pm for rounds.
• 7:00pmish – Visit Jody. Watch her sleep for several minutes. Talk to husband, Ed about the day from our perspective. She’s had a few hiccups, and many drugs have been administered. She looks pain-free when we see her. She wakes up…I touch fingertips with hers. We both tear up. I announce that there aren’t words, she says "I know" then let’s me weep a little bit in an embrace that is surely uncomfortable.
• 8:00pmish – A friend visits. She gives me ear buds for my laptop, compliments of AirTr*n. Thanks Susan.
• 9:30sh – Julian leaves to relieve our friend, Kathy, who completely rescues Quinn earlier yesterday from the afternoon drama by taking her to see her dogs, then to dinner, then to our home for bath and bed.
• 10:15sh – I call Julian and let him know that Gage is at least talking to me without crying out in pain. He’s doing better. He says Quinn is still awake. Will make for interesting 7:15 bus arrival.
• 10:00p-3:00am – Gage is awake and watching TV and talkative but still not moving. By the way, there are no appropriate cartoons on between 10p-3a. So Gage’s nurse gets him, for the love of all things Sco*by, a movie starring, well Sco*by. He’s mildly ticked off at us when we move him to assist his lungs and when we apply oxygen. He’s not happy with nasal tubes. Tells his nurse she is "Bad, Bad, BAD!" I answer some emails at this time. If I haven’t sent you a reply, I’m still getting through them. Thanks for all the messages…I have read every one of them.
• 3:00-3:30am – we both go to sleep.
• 5:30am – Nurse wakes me up to get me to close my "bed" chair to weigh him. Even though I point out this must be how they weigh whales, he’s unimpressed. He says "I don’t care! I don’t need to be weighed! I’ve been weighed before!"
• 6:00am – The nurse says his Foley cath needed to be flushed out. She also said his 2am labs are in and his creatinine is at a normal 1.0, with a BUN of 18. Jody’s fine looking kidney is working like a champ.

I need to be out of Gage’s ICU room between 7-8 (or I’m stuck in the room for the hour due to privacy issues) so I will use that time to wash my face, brush my teeth and get some breakfast and a tall, cold diet coke to assist me with the effects of less than stellar hours of restful sleep.

The hospital is no place to rest I tell you.