Delayed Gratification

Well, we will be going home, but it won’t be tonight. With the IV still in place and supplying 150 ml per hour, we did a test run today to see if Esther would be able to drink enough. The goal for today was 3 liters and Esther did it! But it was 9:30 p.m. by the time she reached her quota. Given the hour, the cold, the dark, the fact that my van is in a parking lot somewhere covered in snow, my state of exhaustion, and the fact that Esther would have to turn around and come right back to the hospital first thing in the morning again for labs, we’ve chosen to stay put for the night.

Esther needs to get up and walk laps around the pediatric floor every couple hours. For a change of scenery and a bit of mischief, we are thinking about sneaking out and down the hall to leave Esther’s eleven empty water bottles in front of her nephrologist’s office door.

We're all packed and will be ready to blast out of here tomorrow morning!

Going Home?

Esther made good progress yesterday! By evening, she was much steadier on her feet and had more of an interest in eating. Still some recovering to do, but she doesn't need to be in the hospital to do it. I think the biggest challenge for her will be drinking enough to stay well-hydrated. Once the IV comes out, she'll need to drink 4 liters a day.

We have to wait for lab results and official marching orders, but we expect to be able to go home later today.

Sunday Update

After 40 hours of fever, Esther turned a corner last night and is doing better today. She is weak and continues to have diarrhea but, hopefully, the worst is over. The transplant surgeon stopped in earlier and is pleased with her lab results from this morning, but is still cautious and withholding judgment until today’s results become a trend and not just a one-time blip.

We are still waiting for the results from many lab tests and cultures but, in the meantime, the docs have been treating Esther as if she had some of these things, just in case. There are a couple pathogens that the doctors were able to rule out. One of those was C. diff (Clostridium difficile). Praise God! Samuel has had it and it is nasty! While the whole pediatric floor is “closed” due to H1N1 and caregivers are supposed to be the only visitors, they imposed extra handling precautions on Esther for a day while they waited for the results of the C. diff test. Again, we are very relieved that she doesn’t have it and that she’s been released from her “isolation”.

Esther is on four different immunosuppressant drugs. In addition, she was blasted over Christmas with IV steroids after biopsy results showed that her body was trying to reject the kidney. These extra drugs did their job of stomping all over her immune system and stopping the rejection, but her now highly immunosuppressed state has made her vulnerable to opportunistic pathogens. To give her body some chance of fighting off this illness itself and to lower some drug levels that were too high as a result of altered absorption, the doctors have temporarily stopped one of her immunosuppressant drugs and reduced the dosage of two others. At this point, we don’t know if it is the medications that they have given, the medications that they haven’t given, or just time and hydration that have made the difference for Esther. It is too early to tell if her improvement is “real”, as they say. More time, more lab results, more fluids, more prayers are all needed.

Temporary Setbacks

Last night's plan was for Esther to be discharged this morning after confirmation that everything looked good with the morning labs. Unfortunately, Esther spiked a fever in the middle of the night and is now quite sick. The docs are running more tests, changing medications, and calling in an infectious disease specialist. So we're back to square one. We'll have to wait and see what today brings.

Speaking of square one, another potential donor for Samuel was disqualified this week. This person wasn't compatible with Samuel directly, but he was willing to donate on Samuel's behalf through the the National Kidney Registry and their program of arranging paired exchanges. You can read about the work they do here: http://www.kidneyregistry.org/living_donors.php#welcome

What a pile of emotions come along with news of this setback!

~ Disappointment that it didn't work out yet again.

~ Sadness that that light at the end of the proverbial tunnel just got smaller.

~ Concern for Samuel. Dialysis is hard on the body. Long-term transplant outcomes decrease the longer one is on dialysis.

~ Grief for Samuel. He is longing for a transplant.

~ Relief that someone we know and care about won't be put at risk or suffer pain as a result of donating.

~ Thankfulness that the Lord used the screening process to reveal a potentially serious health issue for the donor.

~ Confidence that, if not this person, the Lord must have someone else in mind as a donor for Samuel.

~ Gratitude for the incredible selfless generosity of this would-be donor and the many, many others who have been willing to make the sacrifice for Samuel (and Esther and Katie!). These folks are heroes to us whether they end up being able to donate or not. How very grateful we are to each of them!

A special thank-you today to you, Chris. May the Lord bless you richly for your willingness to give such a precious gift!


Tom brought Samuel in this morning for his usual dialysis treatment. It is number 379, but who's counting? In the darkness of the early morning dawn, Tom and I were both able to look out our brightly lit hospital windows and wave to each other across the dark abyss between the two buildings. It was a bit surreal. I hate having two children in the hospital at the same time!

And She's in the Hospital Again!

Creatinine is back up. Could be a result of dehydration, could be caused by a high Prograf level. Either way, Esther is once again a patient on Baird 5. We currently have a roomful of IV nurses who are trying to find a good vein to use for an IV - two unsuccessful attempts so far.

The plan is to continue the rehydration. We expect it to be a short stay.

And She's Home Again!

Esther received four liters of IV fluid while in the hospital and her kidney is now a bit happier. Creatinine is down to 1.20. Esther came home this afternoon and is under strict orders from the doctor to drink another four liters before bed. It will be a challenge for her.

We'll go back in for labs in the morning to be sure the treatment is doing the job. So grateful that simple H2O is the medicine of the day!

Have YOU had a glass of water lately?

It's a Revolving Door!

Esther went back to the hospital this afternoon. Thankfully (and hopefully), it is only for the purpose of rehydration. We and our house guests were hit with a violent and virulent stomach bug beginning on New Year's Eve. In a houseful of 19 people, 16 of us got it over the course of 4 days. Two of our guests had already had it. That means, out of the 19, only one remains standing. Go, Kathryn!! Unfortunately, we also know of a couple others who are now sick after being at our house briefly over the weekend. It was quite a nasty bug with an incredibly short incubation period! We were washing hands like crazy, but alas, to no avail.

Amazingly, Esther was one of the last ones to become ill but, as a result, got quite dehydrated. I'll spare you the gory details of how she came to be so dehydrated. She is back up on Baird 5 getting plumped up with fluid. She has lost nearly 8 pounds since she was last weighed when she left the hospital on Wednesday and her creatinine is back up at 1.70. It was last 1.02. Tom took her up this afternoon and is with her now as I am still recovering. Hopefully, they'll get her fixed up and she'll be back home again tomorrow.

Never a dull moment!

P.S. We managed to have a great time with our friends despite all the throwing up. It will be a New Year's not soon forgotten!