Day 8

Claire's hemoglobin (blood level) was 10.0 today! This is an awesome jump from 9.1 that it was down to on Saturday after the big blood loss. So far they are not going to transfuse her but will keep watching it throughout the week. They would like it to be 11 or more but feel comfortable with where she is now. That's a blessing.

We got some things done today that help me feel more prepared for "the call." Claire received a special blessing from Jared and some friends from Church tonight. That puts all our spirits at ease a bit and brought a sweet spirit of peace to our hearts. I was amazed she sat on my lap throughout the entire thing, without moving a muscle! I guess I shouldn't be too surprised...she never ceases to amaze me. I also got some letters in the mail I've been meaning to write for a while now, and we got our cute family pictures hung above the piano!

We all get to go get our flu shots this week...and just a note to any family wanting to come visit...you have to get yours too!

Daddy play time!

Day 7

Life is good today. Nothing much new to report on. Sometimes it's okay to have an ordinary day. We'll take it!

Claire's blood level will be tested tomorrow.

"Oh, I love you so much," were Benson's exact words as this photo was snapped.

Day 6

I love having the kids in bed early! Tonight may have been a record: 6:40 pm! Haven't heard a word from them since.

Today I'm going to answer some FAQ about the transplant and all that it entails.

How long the waiting time will be is anyone's guess. It could be tonight. Likely few weeks. Possibly a few months. No one knows. It's a very strange thing to think about because we are basically waiting for a 5-7 year old child to pass away, and for their parents to allow his/her organs to be used to save Clarie's life. I don't necessarily like thinking of it, but that's the reality. You would never wish for someone's child to be taken from them. But since that does happen, at least something positive can come from it. One life is taken from one and given to another. I would find comfort in that, if it was my child that was taken, and I pray that their family will too.

The surgery itself will be around 12 hours. 12 excruciating hours of worry, anxiety, and prayers. It's hard to imagine how we will feel during that time, as we get frequent updates from the nurses. And then seeing her for the first time after it's over will probably be unlike anything we can imagine. I guess you just take it in as it comes. One step at a time.

Benson will stay with a friend for the first day or so. One of the grandma's will come out when we give them the word and will stay with here for a while. Claire will be in-patient in the Pediatric Intensive Care Unit for about 3 weeks. Jared or I will stay with her every day/night she is there. It is expected she will then be treated as an out-patient for up to three months. All of these time frames are estimates and could obviously differ depending on how things go. We probably won't be taking Claire out of the house for at least the first 3 months post transplant, as her immune system will be very weak. She will be on immune suppressant drugs for the rest of her life. These drugs help her body not reject her organs. Because of this, we will always have to be extra careful about her getting sick or anyone around her spreading illness.

She will have to be on dialysis post-transplant to help out her new kidney. Her body is currently so overloaded with oxalate that there is a risk of her having the new kidney fail, because it is trying so hard to get all the oxalate out of her body. Because of this, she will continue dialysis for some time after transplant until her oxalate number lowers sufficiently and the new kidney is able to keep up. It could take anywhere from a few months to years for ALL the oxalate to be removed from her body; but eventually the kidney will be able to do it without the help from dialysis.

We try not to think about this whole process too much....or it would pretty much drive us crazy with worry and anxiety. We just keep taking one day, one hour at a time and take it as it comes!!

Benson and Claire were blessed with a quick recovery from their sickness. We'll check Claire's blood level tomorrow and see if she will need the transfusion or not.

Just hanging out before bed.

Day 5

Being Saturday I (Dad) took Claire to the hospital. Saturday is my dialysis shift, which I enjoy. It’s always fun to be able to spend some good quality time with Claire. Today things went well at dialysis. We took a blood test before we started to see if Claire would need to have the blood transfusion that the doctors and nursers expected. After 45 minutes we got the results and it was good news. Claires blood levels were sufficient enough to avoid the transfusion today, but more tests will be run on Monday to see if she still needs a transfusion. Hopefully she’ll recover from the major loss of blood yesterday. So we occupied our time with blowing bubbles (our favorite past time), reading books, watching the Letter Factory and having a tea party (she’s a great host). Claire is getting pretty good at blowing bubbles with her daily practice sessions.

Day 4

Today was quite the day. Again.

Last night Benson threw up three times. There are few things worse than a little one with an upset tummy in the middle of the night. He was miserable and so were we. He is doing much better today as far as the tummy goes. However, now he has a fever, cough, and runny nose. Poor guy. He stayed home from preschool with Jared and thankfully got a little nap in while watching a movie. He’s feeling a little better tonight and we’re hoping this sickness doesn’t linger long. It’s nice that it’s at least the weekend so I can stay home and take care of him. Claire has got a runny nose and we’re praying the sickness stops there for her.

Dialysis was not so good today. Shortly after we got Claire started, the machine kept alarming that there was a blood leak. It didn’t take very long for all of us to see the blood leak in the dialysis membrane. There are lots of little tubes in the dialyzer that the blood goes through. The dialysis solution that “cleans” the blood runs all around the tubes, but the blood and the solution NEVER touch. Except if there’s a blood leak. One of those small tubes was cracked/broken and we could see her blood leaking into the dialysis solution. This exposes her blood to the clean but NOT sterile dialysis solution and that exposure means possible infection. Because of the risk of infection in ‘returning’ her blood to her body, they simply had to stop dialysis and literally throw the whole circuit of blood away. 80 Ml of her blood gone. That is A LOT of blood to loose for a little one. That is heartbreaking for me to see as a mom. Her precious blood that she needs SO much, gone. She looses some blood each time she does dialysis, but we’ve never had to ‘dump the whole circuit.’ Not good. Because of the loss of so much blood, she will get a blood transfusion tomorrow. We’ll add it to the list….making that her 15^th blood transfusion.

After all this happened, I heard many of the nurses say that in all of their years of being a dialysis nurse, they had NEVER seen that happen. They were taught about it and read about it, but had never actually seen it. Only one or two of them said they had seen it, many years ago, and only once or twice. They believe it was a manufacture defect and don’t think it was anything they did different to cause it to happen today.

Thank goodness for the person who donated the blood that my little one will receive tomorrow. Donating blood really does save a life.

On the bright side, I had a great visit with some friends in the area and feel uplifted by the service that has been offered to our family. We are blessed to be a part of an amazing Church family who has stepped right up and assisted us in any way they can.

After the blood leak ordeal, we had a half hour to kill while they set up a new machine and got everything ready start her dialysis again. Claire and I walked around outside and enjoyed a moment of quiet by the water fountain. Still smiling!

Day 3

One of the few quiet moments today.

Today was not an easy going kind of day. Benson came to dialysis again with Claire and I and it was busy (to say the least). They were both demanding, clingy to their mommy, and needed lots of attention. It was a long three hours and we were all ready to get outta there!

But the fun didn’t stop there. Claire had an eye appointment at 1:45 and x-rays scheduled of her hands, legs, and pelvis after that. If you haven’t been to one lately, eye appointments are NEVER short. She's had a plugged tear duct in her left eye since birth and it hasn't ever opened. We tried to get the surgery done to probe it open in Colorado but they couldn't get her in before we left. Here, they're booked out till November. The doctor said since she was already active on the waiting list, he'd prefer waiting till after the transplant to do the surgery. And so that is that. We'll wait till after transplant. Two hours later, we headed for the x-rays.

Claire really doesn't like that room. The fact that they make ME put on the big, scary vest is most traumatizing for her. Her one source of comfort, protection, and security suddenly becomes “one of them.” Now who's going to protect me, she screams! We strap her down for the pelvis and legs, and hold her hand under a thin plastic sheet for the hands and get it done just as quickly as possible. ALL DA DA, is her way of saying All DONE! Yes, finally all done.

Three days up.

Day 2

If you're silly and you know it make a funny face! Her silly face is always the same:

We got a call from one of Claire's transplant coordinator and she said they were writing an 'appeal letter.' This letter would explain Claire's current condition, disease, age, etc. to UNOS (the United Network for Organ Sharing). Through this process, they would be able to get Claire more points, making her higher up on the list to receive a transplant. She told me this appeal process usually takes one to two weeks to go through.

Today when she called she said a new record was set. Claire's appeal got approved in one day. So now not only is she on the list, but she is VERY high up on the list with 24 points. (I don't really have a frame of reference for what that means, but from what I gathered from Claire's coordinator, she's sitting pretty high). The main hold-back for Claire will simply be getting organs that are the right size for her little abdomen. Could be tonight, could be in a month. "Sleep with your phone with you and be ready," were the last words the coordinator said. I wonder how well we will be sleeping for the next little while.

It's a very strange feeling to know that at any given moment, your life can and will significantly change. It's kind of like having a baby. Our bags are packed, we have a place set up for Benson to go, we're emotionally getting ready to pick up and go any hour, day or night, grandparents are also getting ready to come out when they get the call from us, but no one knows when it's coming! And just like having a baby, we are also blessed with NEW LIFE at the end of it all.

One quick side note about today: Fubsee Me Benson, our Beta-fish of 4 months, died today. Very sad for sweet Benson. Jared and I were just talking about Fubsee after dinner and commenting that he didn't look so good tonight, and really hasn't looked that great for the past few days. We took the kids for a walk to the park later and when we came home, my first glance was to the fish tank. Fubsee was definitely 'gone.' Benson pulled the stool over to see and started crying. He needed lots of big hugs tonight. Poor Fubsee....but glad he is not suffering/sick anymore. Benson helped "flush" him as we all said good bye. (A little dose of American Funniest Home Videos also helped lighten the mood a bit after all was said and done.)