Baby Christopher update July 2011

Many of you have been praying for and following the 'adventures' of Baby Christopher.

He is, as you recall, the little tyke who was born with severe heart defects -- so severe that shortly after birth he had to have a Cardiac Transplant.

Further complications developed after the Transplant surgery including total renal shutdown and renal failure.

So, for the past 16 or more months he has been on peritoneal dialysis while awaiting the time when he would be big enough to be able to have a renal transplant.

Many of you have been following all these developments on the excellent Caring Bridge Website.

You will be thrilled to know the latest news.

So, without further ado, here is the update posted by his mother on July 1, 2011:

Hello Everyone! Shannon here.

After 17 months of having no true kidney output, Christopher is finally on the path to transplantation. This past week George and I received our first phone calls from both donor agencies to get the ball rolling.

Wow! It’s really going to happen.

A couple of months ago I finally called my OB/GYN to ask about my blood type. Neither one of us knew our type—we only knew Christopher’s. I’m sure I was told my blood type at some point in my life, especially since I had three C-sections. But at the time, blood type would have seemed a useless bit of info (in one ear and right out the other). George also had given blood back in Oklahoma and I’m sure the Red Cross informed him of his type but he couldn’t remember. So I called and found out—yes, I was a match to Christopher.

My heart sank—not because I wasn’t willing to give a kidney to Christopher. I just needed to give my kidney later after Christopher was walking and somewhat independent. I had previously researched online and discovered the recuperation period after surgery—no heavy lifting (over 25 pounds) for 8 weeks. With a baby boy weighing 26 pounds and wholly dependent on me for most every move I really became quite distressed at the thought I might be the only match.

Again, I found myself entrusting all things into God’s care. He would work out the details if I were the only match.

I pressed George to find out his blood type (“pressed” is a much kinder word than “nagged”). And he finally did find out. He is also a match for Christopher. Thank you Lord. You have given Christopher two parents who are able to give him a kidney in his life time.

Sometime back in April the chief Nephrologist had suggested that Christopher was getting close to the point of referral. And back in May Christopher’s regular Nephrologist said he could start the referral process. But we never heard anything. And we were told specifically, “We’ll call you. You don’t call us.” So, needless to say, George and I were slightly frustrated when we went into our June appt.

We voiced our frustration to the Nephrologist about the time—was Christopher indeed ready to transplant? And she said, “By the time he goes through the referral process, yes, he will be ready.” I then explained that we were ready. We were both blood type matches, both tissue matches…and George had an open calendar for July/August to get tests done. She kindly listened and she made a note to have the transplant coordinator call us ASAP.

So we waited…one day, two days, five days. And I couldn’t stand it anymore. I picked up the phone (I can be a very nice squeaky wheel) and I left a message with the coordinator and asked her to call me back.

So I waited again—one day, two days…and I thought, “How long before the squeaky wheel squeaks again?”

But thankfully, she called me back and I was put to shame because she was so nice and so overworked. She took down some info on Christopher and said that George would need to call the adult donor office and the two offices would work together to get everything ready to move Christopher towards transplant day.

George had a lengthy call with the adult coordinator. The first step—he will have to give blood, a lot of blood for a test to make sure Christopher’s blood does not reject his. So two dates were put on the calendar—July 13th and 14th—in which Christopher will have a work-up done (don’t know the details yet) and George will give his blood. We will also attend a transplant class (hmm, I believe we’ve been through part of this before for another organ). We are hoping this also involves a meeting with the surgeon.

We don’t have all the info yet but we wanted to pass along the good news. It is going to happen! Christopher’s little body will finally have a chance to fully heal. I just want to cry!

So our prayer right now is that details will come together and come together smoothly. George would ask that everything could happen quickly and Christopher might even transplant before football season. I know that might sound silly but as you all know, George’s job becomes so important during college football. The paper relies on his columns during that time. So if the Lord wills, and the timing is safe for Christopher we ask that his transplant might happen in August (the adult coordinator thought it too soon—she thought September more feasible if everyone could get their “ducks in a row”).

I’m typing this update and I have butterflies in my stomach. We have lived a pattern of life for so long now—a strict schedule of meds and dialysis, a schedule of retreating upstairs to allow the night nurse to take over, protecting Christopher by staying away from crowds, monthly drives to Portland for doctor visits. None of it has really been a burden—just a change, a change in lifestyle. And now the reality of another change is beginning to sink in—it will be for the better, but it is slightly daunting to think about another surgery for Christopher with my husband next door.

The other day I took Christopher into Costco. Elizabeth pushed him in his stroller while little George ran around them, annoying his sister but making his baby brother laugh. I heard a little toddler boy say to his mommy, “Look…a baby.” Christopher was sitting up straight, chewing on his blanket. The mom said kindly, “Yes, that is a very fat baby.” I just smiled. People love fat babies and Christopher does not disappoint. I’m sure he looks like a 9-month-old chunky-monkey. And that’s okay. His big fat cheeks get covered in kisses every day of his life. He will grow. He will become a little toddler who walks and runs all over the house. He will change into a young man.

SO, for now, I will hold my little baby boy a little closer. I will hold him a little longer. I will repeat “bang, bang, bang” all day as he bangs his toys together and looks up at me with a smile. I will lie on the floor with him and point out his colors. I will “talk” back to him as he “talks” to me. I will growl at him and pretend to grab his nose. I will enjoy my days and love my little baby for he won’t be a baby much longer.

Thank you all for following along with us through this entire experience. Little did we know back on January 16, 2010 (heart transplant day) that we would still be blogging 17 months later about Christopher and his health. The Lord knew and He his has given us the encouragement of friends. You all have truly lightened our burden and your entries, both long and short, have sometimes been the only bright spot during a very difficult time. At the end of this journey, Caring Bridge offers to put all journal and guest entries in a bound book. I so look forward to the day when we can write the last chapter. I look forward to bringing the book home and saving it as a testament of God’s abundant goodness towards us—His people. It is indeed a beautiful picture of His body, the church, to be on the receiving end of so much care and love. It is a glimpse of heaven (which makes me say, even more fervently, “Come quickly, Lord Jesus!”).

As more info comes into light about Transplant Day, we will post and let you know. But for now we can all smile because there is an end in sight. Hmm—August or September?