Listed: Week 3 (hurry up and wait)

Week three was a doozy, that’s for sure. And while I really want to blog about all of it, I’ll be honest and tell you that my brain has melted and there’s no way I can get it all out right now.

Here’s a summary for those that are not following on Facebook (Corrigan’s Detour)

On Monday evening, at 10:01pm we got a call from D.C. They had a potential donor but didn’t want us to come down until they called back in the morning.

Longest night of my life (and I’ve had a bunch of them)

On Tuesday morning they called and felt that it was still a good possibility for Corrigan but still didn’t want us to drive down yet. Around noon we got word that it was time to go, so we threw everything in the car and left.

(Let’s do this!)

We arrived at 3:30pm and nothing much happened after we got to the transplant floor. Turns out that someone not from transplant called me and told me to come, but transplant was not aware. Around 9pm they made him NPO and then began running three different IV bags to prevent him from becoming catabolic from his underlying disorder. They ran D10 with saline, lipids, and a small concentration of his rescue medication (ammonul) in case his ammonia wanted to rise a bit due to not eating/no tube feeds etc.

From there on out things just became incredibly frustrating. Many many times we were told “the donor is heading to their facility’s OR at such-and-such and time”, only to be updated an hour after that scheduled time that the OR time was moved ahead. And on and on and on for days.

Days? Well, yes days because while we were sitting there for a possible liver from donor #1…amazingly another liver became available that was a match and size for Corrigan as well. Interestingly, both donors were at a hospital local to D.C. And in the same hospital as far as I understand.

(Waiting with family)

Eventually (I can’t even remember exactly what day or when…midnight Wednesday night I think) the doctor came in to tell us that donor #1’s liver, while the right length for Corrigan, was deemed too husky in volume to be considered a good fit.

Corrigan isn’t in a critical state and there’s no need to shove something in there that’s not ideal and you can’t exactly shave a liver down to make it fit either, so it was a no-go. Boo.

BUT!!!! the second liver, they told us, was a much more likely fit as the donor was under age 18. The first donor was a “young adult”. Corrigan’s current “factory installed” (hehe. I love saying that) liver is a big one. His abdomen is already housing a pretty large-for-his age, 17cm liver, so they believe he can handle a bigger donor organ but his abdominal cavity isn’t a clown car so 🤷🏻‍♀️…

We know they felt the second available liver to be a better possible fit because we were suddenly signing consents and new and different labs were taken etc But after another day of hurry up and wait, with Corrigan even having a scheduled OR time (gulp!) it ultimately didn’t work out for our family.

(Still waiting)

The surgeons told us that upon physical view and biopsy, the liver was more than 40% fatty. A physician told us that 25+ years ago they rarely saw a pediatric patient with fatty liver however, with our terrible American diets, it’s all too frequent now.

Again, because Corrigan can afford to wait, the second liver was then allocated elsewhere and we were sent home late Thursday evening.

(Big brother came up from college!)

People keep asking us how we are feeling. Many expected us to be saddened or discouraged but oddly we are not. We have the time to wait for the perfect liver and his team knows that too so they’re being extremely picky on his behalf.

Are we exhausted? Oh my word, yes. For just a few days of sitting around waiting, the let down of such tense emotions has made both of us feel almost flu-sick today. Our brains are foggy, and even physically we feel strange today. Days of sitting and poor eating and gut-fulls of stress about all of the possibilities, not to mention a palpable sadness at the knowledge that two young people are now gone from this world, have worn us down.

How’s Corrigan? He’s fantastic. He did his usual excellent job in the hospital, however he did not enjoy the prolonged need to be NPO and not be able to even take a sip of a drink. He was not a happy camper having to give up his beloved root beer for days but overall he was awesome. As usual.

Cons from the week: The silence.

It is the worst to be told there’s a possible organ and then hear nothing else, even when we were physically in our transplant facility, for hours and hours and hours and hours and hours. The nurses, while fine, all had the same rote relies when we would ask. They don’t tell us anything at all. We often only know minutes before you do. When we hear something we will come right in.

I’m not privy to the complex dance of organ procurement, but I do understand that it’s hard to nail down times and things are very fluid. For my husband, whose job is literally logistics management the waiting and uncertainty and changing of plans over and over was frustrating beyond words.

Cons: zero family support. We expected to meet with the social worker and we stressed about where exactly we were supposed to go after he went into surgery. We didn’t know, and couldn’t get clear answers, on whether we could stay with him in the PICU room or not, if just one or both of us, and we just had a lot of questions we would have loved to run by someone tasked with those kind of details.

We saw no one and we asked. We also thought that Corrigan would get some pre-surgery support from Child Life but did not really see much there either. Perhaps that stuff doesn’t occur until it’s an official “go”? Like I said, we just felt like there should have been more communication, reassurance and support for such a monumentally stressful event for any family and we kind of felt lost. But then again, we are massively spoiled by all that Johns Hopkins offers. It was starkly different.

Okay, so what are some good things?

Well, it was a good practice run I suppose. We learned what we needed to pack and didn’t. And what we did pack and didn’t need. We better understand the warrior-level of patience needed to wait for an answer. We learned that the batteries in our devices suck and we need better charging cords. Ha. We got to meet even more of the surgeons and met DrK who is now like my favorite person ever. What an amazing, positive man who spoke to us like we were contemporaries and never dumbed a darn thing down for us.

And Corrigan got a little bolus of rescue meds, so even though he went in perfectly healthy and an ammonia of 35- he left even more clear-headed from the scavenger med boost, with an ammonia under 25. We always like to see the fog clear from his brain and it also allows us to enjoy a few days from any fear of hyperammonemia as the ammonul does its thing for a bit and the lower ammonia we come home with, the longer it takes for it to rise once more should his body decide to do something like that for whatever reason.

We had family there to support us and while I feel awful that my Dad and step mom, my sister and Connor, all put their lives on full-stop for us, it was comforting to have them there. If any of you are reading this, I’m sorry I couldn’t talk much. I’m sorry for the mood I’m sure you felt. I was lost in my own thoughts for much of the stay and even though I didn’t need any of my medicinal help to stay calm…I was definitely actively trying to keep my thoughts from becoming unreasonable and overpowering my common sense. I spent three days willing myself internally not to cry. And I think other than the morning we left to hit the road, I’m not sure I did cry again. It was a heavy few days for me, and I’m afraid I wasn’t my best self. But I love you for being you…my beautiful family. 💚

So that’s week three! We got a call! We got a chance at TWO livers and we learned a lot.

On February 12, Corrigan moves to status 1b and this will open up a world more organ options. The team has assured us they won’t be running us down for each and every one, they’ll continue to be judicious, so we will just stay faithful and are now better prepared when the next call comes!

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