By all standards Gage’s progress is measured, he is doing incredible. The surgery instantly made him feel better. When you go from 15% kidney function to 100% there is simply no comparison. The perfect kidney function has allowed him to get an instant "feel good" mentality that has helped his recovery. All in all, it’s pretty spectacular to be a witness to the impact of the new kidney.

Here are the specifics on his recovery…

• His skin color is better, definitely better.
• He says his tummy feels "tight" where the "big kidney" is and is loose on the other side.
• He reports that he has a lot more pee. And that it’s yellow!
• He’s eating a lot more. He’s on a steroid which has the side effect of making one more hungry than usual and on a regular kid we might be concerned. Gage’s nutritionist wasn’t concerned a bit because Gage is so underweight. Just to give you an idea, in August he had a bone age test and his wrists were that of a 3.9 year old boy and his hip/legs around a 5 year old. Pretty sad. An average 8 year old boy is 57 lbs. At the beginning of dialysis he weighed 43 lbs. and entering transplant 6 1/2 months later he was just shy of 47 lbs. Hence, the growth hormone before transplant. In the 3 weeks since transplant, Gage has gained almost 4 lbs, today weighing in at 50.8 lbs. That’s over 50 pounds. Wow. Just wow.
• Don’t think he is eating us out of house and home just yet. It’s more like he’s eating like an average child his age would. Pre transplant he could have survived on two pop tarts in a day, juice, water and a Cinnamon bread and butter sandwich, not very likely to satisfy him now. He’s eating about 5 times (small amounts) a day, and adding a few new items to his basic 8. He’s for sure making up on the milk he’s missed over the last 7 months (restricted diary). The boy can down some serious milk. For now, we’re fine letting him have it as long as water is in the mix during the day as well. We’re up to about 2 1/2 gallons of milk for the kids a week. His thirst for juice is all but gone, along with his desire for bread and butter sandwiches. He’s still off meat, except bacon he’ll tell you because "Bacon isn’t like meat! It’s good!"
• His disposition seems sunnier. By sunnier I mean he seems more cooperative, cheerful. It’s what I imagined a child would be like when I married my beloved and had dreams of becoming a mother. He just seems happier. He can’t quite articulate that he feels better than before, but you can tell. I know this because when people talk to him he answers back, when Quinn needs help, he needs no prompting. Don’t get me wrong, he had a little tantrum last night that would have made Dr. KATB charge us for an emergency session immediately, but that is the only one that I can think of that was pretty bad since he’s been home.
• He’s active again. He wants to climb and lift things but we’re still stopping him from doing that. He’s not supposed to be doing that until at least 6 weeks and even then he’s supposed to proceed with caution. I’ll let you know how THAT goes.
• If you didn’t know he had a KIDNEY TRANSPLANT three weeks ago, you would not know.
• His 10" incision is now healed having just lost the last patch of scab. He was very excited about this and lifted his shirt proudly yesterday when it happened.
• He can now take a real bath: a high-water, splashing, lay(or is it lie)-down-in-the-tub bath now that the cath is gone and the incision is healed.
• He still sleeps about the same amount of time…8 to 8 if we let him. We get him up a bit earlier so he can stay on a 12 hour exactly med schedule.
• He is starting to show us more energy. Things to come? Even more probably. Bring it on baby! As long as the sunny disposition stays.
• He misses school. He could go back (no recess or PE) but his immune system is as low as it will ever be because the drugs are high at the beginning and taper down. We’re not to the taper down stage yet. And because kids are, by nature of what they are: germ breeders, it’s best if Gage isn’t touching them for now. If all is still going well in a couple of weeks my guess is that he can go back for 1/2 days. Who knows.
• Gage is very good about self care…he’s taking his meds, he’s washing his hands, he’s watching his incision, he’s drinking water. I think he’s doing much better about of self care more than an average 8 year old. Maybe I’m biased. But still makes me proud.

My boy, he is doing superb. The Village should be proud. They should be proud that they have taken such good care of us, so much so, that we’ve been able to focus on the boy. We’ve been able to help him with his new meds, his new schedule, his new hospital routine and work enough to keep clients happy. Client billing might return to normal in a month or so. That, is amazing. And since we’re of the variety that are self-employed, in business together, we’re very happy about normal billing. Trust me, so is our insurance company.

Jody, her sister and her parents came to see the boy who now houses her kidney on Friday. And they brought donuts! You know how much the boy loves him some donuts!

I’m happy to report that the Gage is doing great. Jody thought he seemed pretty happy. We agreed that his disposition is much better. Who really knows how badly he felt played into his behavior and attitude? I’ll post a picture of Jody and Gage once I get permission. Apparently, she thinks I just focus my attention on Gage when I picture take to make sure he looks good…and I have to run the photo by her first*. Although I must say, she looks pretty good to me.

*She’s approved the photo. Note the t-shirt that says "I heart my kidney donor!" Very clever.

My girl. She’s been needing a lot of attention from Mommy. Apparently, she is suffering from a form of PTTSD, which we shall call Sibling Post Transplant Traumatic Stress Disorder. The symptoms are the following: whiny, hanging on Mommy’s arm for dear life at the mere mention of Mommy leaving, bedtimes cries about more snuggle time, needing to be on top of Mommy at all times Mommy sits, among other things that involve screeching very loudly. 

But Friday she was in her bliss while I attended her Pre-k picnic. It was another story when she had to be pulled away from me to load onto the bus without me.

In other very exciting Friday news…I was able to spend the night away from home. A friend invited me up because her husband and child were gone for the weekend. And well, "why not spend the night?" was her offer. After much convincing the Quinny B. that Mrs. Beth needed me for company for the night she quickly came back with "she has that dog doesn’t she? She doesn’t need you!" See what I mean? SPTTSD! But after I explained the dog doesn’t talk, and Mrs. Beth loves to talk to a human she mildly agreed to let me go and helped me pack.

Not me people! I’m still on shaky ground…

But Gage’s labs from our clinic visit on Thursday are very steady. His creatinine is still a respectable 0.6 and docs are happy. We’re changing pharmacies (long story, trust me), so that’s a little bit of a hassle.

Other news…Gage is feeling very good. He’s up and about and bored with this whole recovery. His last comment about staying home to recuperate is:

"I am bored with this house. We need to move to another house that isn’t so boring." I mean, how can he be bored? He’s got a Webkinz animal he follows on line daily (please? why did I not invent them?), he has new computer games compliments of some friends, new Sco*by movies to view, coloring with me, arts and crafts galore! I mean really, I’m nothing if not fun to skip school with! Just ask my friend Kelly! Except the last time we did that her mom busted us as McDs!

Tomorrow Jody is coming for a visit with her sister to see us in the morning before I’m off to a Pre-k picnic for Quinn, who informed me that is it mandatory that I be there. Dang that girl is clingy right now. And it would be cute and sweet, but it’s annoying. Because I am still tired.

In sad news, we have a friend who have a child in the same ICU as Gage was in and he is not doing well. So if you wouldn’t mind adding some extra prayers, chants, good wishes and positive thoughts for P, I’d really appreciate it. I am extra sensitive to what they are going through this week, based on our stay just a short couple of weeks ago but I still can’t truly know what they are going through. Their baby is on a ventilator. He’s a sweet heart of a boy.

Post Transplant Traumatic Stress Disorder. I swear I have it and it’s real.

I am, today, just coming out of the fog that has existed for the last two weeks. We are two weeks post transplant today and I still can’t believe it happened.

I was holding in so much about my fears for Gage’s and Jody’s lives that I couldn’t acknowledge them at the time, because time after time people implied that thinking something bad might make it happen. That isn’t true by the way. This kind of death fear in your soul for your child and a friend in this situation makes you human.

I had/have so many emotions wrapped around Jody’s well-being in addition to Gage’s that I didn’t acknowledge in my own consciousness until I spoke to her during her recovery in the hospital and almost every day since.

I hadn’t realized until last week that my focus on everything else in my life nearly vanished while worrying. I kept wondering why my desk was a mess. I kept wondering why I couldn’t get errands and to do list items done. I kept wondering why I wanted so badly to talk to Jody several times a day but scared to call her and it was because I was fearful she wasn’t doing well. I felt guilty when I knew she was taking steps backwards in her recovery.

There is such a pull between my hope for Gage’s new life and the reality of possibilities. I am finding that I still don’t know where joy starts and fears stop. They are very tangled at the moment.

I know I haven’t finished those sobs I started as Gage was rolled away from me to that operating room on transplant day. I want to finish weeping for how hard it has been for Gage. For us. But that feels like a betrayal to the miracle of Jody’s gift and Gage’s life. And it feels like we’re so early in this stage that I should save some weeping for later. You know. For when the other shoe drops.

Quinn: "Mommy! When I get to have a new kidney I think it will be fun!"

Yes, we have totally made this all look like too much fun.

I know. It’s getting to be a habit. Now I’m posting on Monday for Friday’s Photo Fun. Dang. I really need to get back to a routine.

Gage took this picture. Hospital life from his perspective.

We’ve been home for 4 days and I haven’t recovered. Gage is doing great…healing nicely, can do most things for himself (if he so chooses), and is able to play. He’s feeling pretty great, All Things Considered. I am still trying to collect my thoughts and put away clothes from the hospital stay and make appointments for myself and the kids and stay on top of the med timing and do laundry and try to remember what happened over the last two weeks, and clean my office, and dig out the insurance papers. Because I’m foggy.

I knew it would happen soon after transplant. I knew that I would wake up and have to process the fact that we are in two worlds; one pre-transplant and one post-transplant. With Gage’s transplant, which is the most surreal experience I have ever had, we are in unchartered territory for our family. We know how to do what needs to be done leading up to a transplant, but not post-transplant. The objectives are the same. The tactics are different. And now that the kids are no longer in the same ARPKD disease process it’s overwhelming me as I realize how the different care they require impacts us in a real day-to-day way, but also on a deeper emotional level personally.

Just today I was reminded by Jody and her family that with Easter brings the promise of new beginnings and for our own family, that makes me cry with joy for Gage. It also reminds me that new beginnings bring new, unfamilar paths. And a new normal. Again.

Right now I am extra sensitive when I think about Gage and Quinn’s futures. I am feeling very exposed to the harshness of their disease. We are in the very early phase of Gage’s first kidney transplant and we have a long way to go to manage his treatment (the transplant) and a long way to go to manage Quinn’s disease to transplant and then…

we still have a long way to go.

I’d been worried about the pain Gage had from his February cath surgery really impacting how scared he would be facing the kidney transplant surgery. We only had about 12 days to prepare Gage emotionally for the surgery from the day of final approval. That’s when Ginger, Gage’s primary Child Life Specialist and Lauren, an intern CLS, starting working with him. On 3 occasions before the surgery they discussed this pain and they worked on this chart with him…and boy was it helpful in those first few days. If you have a child that has to endure procedures or surgeries I highly recommend trying to create one of these…with the help of the generic pain scale also below.

Ginger and Lauren also spoke with him right before his transplant (they decorated his anesthesia mask with stickers) and then they dressed in scrubs so they could walk him into the O.R. — I know it helped him.

They put Sco*by on the Pain Rating Scale and you know Gage loves that SD. Now that was sweet.

I have a lot to post about but am so busy unpacking the 8 additional bags of things we came home with that I can’t find the time.

The short list of items for discussion/thought…

• One sister is leaving today (Thanks Pat!) and another one is coming (Thanks Tammy!) .
• My doc says he’ll give me a reprieve and we’ll see how my stone progresses (or doesn’t as they say) to leave my body. Or it may have already. He’s willing to be conservative right now due to the whole kidney transplant thing and I’m to see him in a couple of weeks for some dye injection study to really see what is going on. Whatever. All I know is that I have two weeks.
• Gage is doing great. Besides a pain episode last night at 12:30, in which I had to rub his head, face and arms for him to relax. I did that until 1:00am. He fell asleep and stayed asleep until this morning. He took his meds (10?) without the resistance we had in the hospital and only gagged on one. Success!
• I have to work some today. But my mind is still stuck in transplantland.
• Gage will go to "clinic" on Thursdays for a while (labs and see team) and go and get labs done every Monday for a while. As long as the process doesn’t take 5 hours, we’re ahead of the game as far as I’m concerned. It can’t, right?
• One of the most shocking things (small as it is) to me post surgery is Gage’s skin color. He’s actually got olive skin, not pasty white. Who knew?
• He’s one of the most resilient people I know. I can hardly think about him and how he springs back from all his challenges without me crying a bucket.
• How do I thank the Transplant Team? Just how?
• How do I thank our friends and family for rallying behind us again?
• I have many things in my head that I need to write about…The List of Things I Wished I Had Known Before, Gage Post Surgery, Transplant Team, Spirit of Community, Mixing Business and Transplant, Hospital Zombieness, and more. Stay tuned.
• I’ve been trying figure out how to do a short and long video (with photos) for Gage and Quinn to see. Primarily I want it for Quinn so she can wrap her little head about what PKD and transplant means for her, although her path might be different.
• Oh, and Gage noticed that his pee is yellow (not clear due to no concentration in his PKD kidneys) and when I told him that’s what pee looks like from working kidneys — his new kidney, he actually clapped.

More later. Need to get through the hundreds of emails from the last week.