This week, I’m looking back.
I’m remembering how it felt that night of transplant. Transplant #2 here.
I am so grateful to have the record of the blog and what our family went through. I hope one day the kids feel grateful about that as well.
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Damaged Kidney Removed from One Recipient, Thrives in Another
“When we removed that dysfunctioning kidney from Ray’s environment, it recovered rapidly after being transplanted in a second recipient,” said Dr. Lorenzo Gallon, Fearing’s doctor and medical director of the kidney transplant program Northwestern Memorial Hospital. “It is the first time that has happened.”
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Dialysis Hospital Kit for Kids
Of course, add a computer for me (before iPhone/Blackberry — I had to do dialysis with Gage without a smartphone!)
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A little known kidney donation fact (at least it’s unknown among non kidney focused families) is that an adult kidney can be transplanted into a child and vis-versa.
I know of an adult who received a kidney of an infant and within a very short time the kidney grew to what the person needed. The kidney is an amazing organ.
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When I wrote about incisions, I forgot to mention that they made Quinnlin’s outtie belly button an inny. I supposed one could ask a surgeon to do that, right?
I do remember when Gage got one of his biopsies his surgeon removed a sliver. I think she did that for free.
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I was fortunate enough to get to spend a week with Quinnlin at sea on the Disney cruise ship Magic and we had a fabulous time. We played at the pool, napped, saw shows, movies and laughed. We did whatever she wanted and she stayed up late. If she didn’t want to go to the dining room at the time slot, we stayed at the pool and had burgers and pizza. She ate ice cream 3 times a day and was fond of their all carbs breakfast of muffins, pancakes and donuts. She was fond of their bacon as well.
We had a wonderful time at our only excursion where we took a tour on a glass bottom boat around Grand Cayman and it was cool and she was happy, so that was fun. We bought Jman a new watch, Gage a new jacket that changes color in the sun, and we bought her a pretty necklace. We indulged, we did. We saw a lot of characters and what was surprising w
as how we didn’t really have to wait in long lines because the boat is smaller than the Dream that we were on last year. We only had to wait a little bit for Stitch.
Around day 4 she felt comfortable walking from the kids’ club to our room, just two floors and one hallway away and then it happened. Two nights left to go on the trop and a kid around 14 was walking with 2 other kids and while they were passing Quinnlin he startled her by a loud noise and lunging towards her.
An alter employee noticed she was upset and we were pacing looking for the punk and so we filed a report. We spent probably 2 hours that night looking for him and she w
as a tad obsessed about locating him for the other 2 days. We never found him, but we’re certain his punkness will catch up with him.
You know what I loved the most? It was just relaxing to be with her alone. No phone, no work, we just hung out and were together. I don’t know if we’ll ever be able to do that again (it wasn’t cheap!) just the two of us, so I am grateful for the time we had together.
In what may be my favorite photo of Quinnlin in a very long time, while waiting for dinner, I captured this:
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If I had it to do it all over again (raise kids with kidney disease) I would…
All 365 Days of Kidneys can be found here.
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When the kids were 1 1/2 and 4, I had a moment of clarity when a doctor told me the single most important thing I could do was to control the kids’ blood pressure.
When Quinnlin was a baby, a very nice nurse taught me how to take the kids’ blood pressure using a manual cuff. When we were tweaking the meds, it was so important for us to get the most accurate reading and the doctors preferred a manual reading.
If you have a child with kidney disease learning how to take a manual reading of their blood pressure. If you do it at home the kids are more likely to be relaxed. For us, I tapered up to taking Quinnlin’s blood pressure by just leaving the cuff when she was in her highchair for a week, then the next just made it tighter and so on, until I was able to take her pressure with no reaction from her.
All 365 Days of Kidneys can be found here.
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Two of the most visible symptoms of kidney failure are the sunken eyes and skin color. There is nothing that can be done to rid these symptoms except a kidney transplant. For my kids the skin color and sunken eyes started changing nearly immediately; within hours after their new kidneys were hooked up and got better over a short period of time.
All 365 Days of Kidneys can be found here.
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Learning about the blimp and safety rules!
There are a lot of times sick kids get extras. In the past, I’ve talked about how uncomfortable it felt to accept these perks knowing the only reason we enjoy them is because the kids have a life-threatening condition.
The kids have both enjoyed a Make-A-Wish wish with Quinnlin’s being a Disney Cruise and Gage’s being a trip to New York for the Thanksgiving Day Parade. The kids have been invited to baseball games, a summer camp and Christmas parties to name a few.
We take advantage of these perks because we never know what is going to happen tomorrow. I know that is the case for all of us, I do. I think for us though, the possibility of something bad happening – making an experience like this impossible – is more likely for our family.
We do it to give the kids experiences we could otherwise not provide and riding in a blimp is certainly on that list. In fact, I’m not sure it would have ever been what I would have considered on our wish list for them so it was a wonderful surprise when it fell out of the sky (so to speak).
We had the opportunity because the organization Believe in Tomorrow Children’s Foundation partners with DIRECTV to provide blimp rides to families with children who have life-threatening conditions while they are in cities for promotions at sporting events. We were lucky enough to get 1 of 3 slots to ride it on Thursday evening (in fact only 2 slots were taken). They allow 1 parent per impacted child and we have two, so both parents could accompany the kids.
High above the Atlanta Motor Speedway
Gage especially need this to happen this week, so imagine how we felt when we knew it was going to happen. We did not tell the kids what we were doing only that it was a surprise and that we’d never done it before and would never have the chance to do it again.
It was one of the coolest things I’ve ever done. More importantly, we were able to let go of our current challenges for something spectacular. We created a memory of being together and we do not take that for granted for one second. Especially when you watch your kids and their expressions running up to ride a blimp. Or as a “co-pilot” or maybe talking on a headset to a pilot and listening to traffic control while floating in the air looking down on the world. The thing about literally looking down on the world below is that for a little bit of time you can leave the problems down there, too.
For now anyway, there is a link to a news story on the ride!
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