Baby Christopher Needs Your Prayers !

Baby Christopher Before and After

Here he is the Before the Transplant

And this is how he looks now:

You will recall that a few weeks ago, we told you about Baby Christopher, the son of Shannon and George (the Sports Writer who has had several of his articles featured on this site) and his need for a Heart Transplant.

Well, he got the transplant. And everyone is praising the Lord for that though also grieving with the donor family.

So, how is Baby Christopher doing now you ask?

Well, sadly, not good.

Yes, his heart transplant ‘worked’ and the new heart is happily and merrily beating away.

BUT (isn’t there always a but) he is still in Intensive Care with no hope of going home soon.

WHY? Because now his kidneys are not working -- probably due to the anti-rejection medicines which, yes, stop rejection of the heart, but, alas, they apparently have also stopped the kidneys from functioning.

Here are the latest updates about Baby Christopher and how you can pray for him.

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Monday, March 1, 2010 3:54 PM, CST

George here with a pee-by-pee update.

Christopher continues to have regular urine output. The regularity is encouraging, but we need him to begin producing a lot more volume.

Also, from the one-step-forward-two-back category: He has become more swollen in the last couple of days.

It's related to a change they made in his peritoneal dialysis. They put in a new tube/port late last week, but the old incision hasn't closed yet. In order to let it heal, they've had to decrease the volume of fluid they're putting into his abdomen -- and as a result, he's retaining more fluid. A lot more fluid.

This has a cascade effect: Where Christopher was breathing on his own last week, they've got the ventilator breathing for him again (when he's very swollen, breathing becomes very hard work). Also, when he's really swollen, it can have a negative effect on the kidneys ...

Anyway, that's the update.

Good news on the continued peeing -- though we need more frequent and more volume -- not-so-good news on the increased swelling.

Oh, one other thing: Christopher has been smiling regularly at Shannon. He knows and loves his Mom.

Thanks for praying.

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Saturday, March 6, 2010 6:16 PM, CST

Hello Everyone. Shannon here.

Please pray for Christopher over the next 48 hours. As George told you last, Christopher had a new dialysis tube/port put in almost two weeks ago.

Initially the site was leaking so they decreased the amount of fluid volume to allow the site to heal.

Unfortunately the site still leaked so the doctors have stopped dialysis (as of yesterday) and will give the site time to heal. They hope to resume dialysis Monday.

Because the dialysis has stopped, the doctors have decreased all fluids/volume so that Christopher will not get any more swollen. This includes his feeds which are basically down to a small amount of formula and maintenance fluids. He will be a hungry little baby over the next few days.

Please pray that the dialysis site will heal. Christopher needs this type of dialysis if his kidneys are not going to work.

One of the doctors yesterday told me there are other options for dialysis, but they are more dangerous for infants.

Christopher is almost as swollen as he was the day after transplant. He still continues to have some urine output--8 cc's most days. The extra edema cannot be helping any of his organs right now.

This has been a hard couple of weeks for us. Hard because we can't see any progress. Hard because we don't know how long Christopher will continue in the hospital. Hard because we don't want to be apart. And hard because I so want to hold my baby again.

As George told you, I did get to hold him about a week ago. It was the first time since December 8. As the ventilator tubes hung from my shoulder and the various wires and discharge tubes hung from my lap, in between all of that was my little beautiful baby, snuggling into my arms. I held him from 2:30 to 5:00 and he slept the entire time. Every so often he would open his eyes and look at me but he quickly fell back asleep. Because of all the equipment, I would jostle him around trying to balance this IV line or that monitor wire. He just jostled around with me without any fuss.

And then I had to put him back and my heart has ached ever since.

The greatest part of this trial for me is enduring the long wait with patience. Don't I so cling to the promise in Psalms, "The LORD is near to the brokenhearted and saves those who are crushed in spirit."

Lately, everyday I wake up and say, "Lord, help me put my feet on the ground."

There is a heaviness of heart as Christopher goes day after day without noticeable improvement.

This morning as I went through the same routine of getting ready to leave for the hospital, I was sad but at the same time my heart was singing that old song, "Bless the Lord O my soul, Bless the Lord O my soul. And all that is within me, bless His holy name!" My hope is found in heaven. And as my thoughts turn to my heavenly Father, I can lean on the truth of who He is and I can ask for the comfort that He promises to give. As I lay out my heart and tell him how hard these circumstances are I am reminded that God never makes mistakes. He will accomplish His purposes. He will work out all things for his holy purposes for his glory. And His will is accomplished according to His character...according to his abundant lovingkindness, lavish grace and tender compassion. So though I desire and pray fervently for Christopher's healing, I also rest in knowing that the Lord holds his little life in His hands.

George will be flying in to town tomorrow afternoon (Sunday) and will stay until Thursday evening. My mom and dad have Elizabeth and George down in Mississippi right now and will bring them back this week so that George can see them and spend some time with them.

Thank you so much for your continued prayers. You can't imagine how encouraging it is for us to read your notes in the morning before we head out to the hospital. You minister to us greatly by word and through prayer. The Lord has blessed us richly!

In Him who gives life and life abundant,

Shannon

P.S.- Christopher has the most beautiful smile. Just this week he has been smiling so much at me--almost like he is cooing. Even though he is so swollen he can still get one eye open and look up at me.

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Tuesday, March 9, 2010 3:19 PM, CST

George here, in Little Rock.

Please pray for Christopher.

Shannon told you in the last entry about the leakage problem we've had with the exit site for a permanent peritoneal dialysis catheter.

The doctors stopped the dialysis for a couple of days over the weekend in hopes the site would heal. He grew more swollen, and he had to be put back on the full support mode on the ventilator (as a precaution), but that's not the problem now.

When they resumed the dialysis, the site resumed leaking. Not much, and only when he became agitated and overly squirmy -- but too much leakage.

This morning, they restitched a different spot (inside the abdomen) in hopes that the leak was actually there. They've stopped the dialysis again for 48 hours, sedated Christopher and started him on a paralytic. If his numbers still look good on Thursday, they might go another 24 hours without the peritoneal dialysis.

This is all to help the site heal. If it does not heal after 48 or 72 hours, the only other option would be going through the veins.

It's called continuous veno-venous hemofiltration (cvvhd -- update, it's NOT what's commonly known as hemodialysis). It's problematic in infants because of the small size of their veins, and apparently the transplant team earlier did not think it was a good option (it also didn't seem necessary). The attending physician plans to consult with them to see why, and to see whether it might be an option if the catheter site continues to leak.

Of course, this all goes back to the kidneys.

Christopher was peeing regular but minimal amounts, but hasn't done so in the last 36-48 hours. This is probably because he's dry because of the things they've been doing to try to get that dialysis catheter exit site to stop leaking (they've significantly reduced his fluid intake). Regardless, that minimal output (encouraging as it was, and would be again) wasn't enough to consider the kidneys to be awakened.

Christopher's heart and lungs and brain and everything continue to function well.

But if the kidneys don't reawaken, and if they can't do either kind of dialysis ... that's not good.

(Note: I'm supposed to return to Oregon on Thursday, but I probably will wait another day or two.)

I know so many of you have been praying, and I cannot express how grateful we are.

Would you pray with us again that Christopher's kidneys would reawaken and resume full function?

But in the interim -- * or for the long haul, that's fine, too, and I'll explain below -- would you pray with us that the exit site would heal so they could resume the peritoneal dialysis?

And that if it does leak, they would be able to do the cvvhd dialysis? (If able to do so, they would do it for a week or two in order to allow the catheter site full time to heal; then they'd go back to the peritoneal dialysis).

We know and proclaim God is good, whatever He brings. But we will continue to ask Him to bring Christopher to full health. We know He can, if He is willing (Luke 5:12-13). We know He tells us to ask, and to keep asking, and to keep asking (Luke 11:5-13).

And so we will.

Thank you for asking with us.

***

* If they're able to do dialysis (of either type) and Christopher's kidneys don't come back, the plan would be to eventually send him home with some sort of dialysis apparatus. At age 2 or 3, he would probably need a kidney transplant. (And of course, we would keep praying for the kidneys to reawaken, but if he needs a transplant, he can take one from an adult -- mine, if compatible.)

***

Luke 5:12-13

12 While He was in one of the cities, behold, there was a man covered with leprosy; and when he saw Jesus, he fell on his face and implored Him, saying, "Lord, if You are willing, You can make me clean."

13 And He stretched out His hand and touched him, saying, "I am willing; be cleansed." And immediately the leprosy left him.

Luke 11:5-13

5 Then He said to them, "Suppose one of you has a friend, and goes to him at midnight and says to him, 'Friend, lend me three loaves;

6 for a friend of mine has come to me from a journey, and I have nothing to set before him';

7 and from inside he answers and says, 'Do not bother me; the door has already been shut and my children and I are in bed; I cannot get up and give you anything.'

8 "I tell you, even though he will not get up and give him anything because he is his friend, yet (A)because of his persistence he will get up and give him as much as he needs.

9 "So I say to you, ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you.

10 "For everyone who asks, receives; and he who seeks, finds; and to him who knocks, it will be opened.

11 "Now suppose one of you fathers is asked by his son for a fish; he will not give him a snake instead of a fish, will he?

12 "Or if he is asked for an egg, he will not give him a scorpion, will he?

13 "If you then, being evil, know how to give good gifts to your children, how much more will your heavenly Father give the Holy Spirit to those who ask Him?"

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Tuesday, March 9, 2010 5:10 PM, CST

UPDATE:

Shannon just discovered a wet diaper: 8 cc of pee.

That's encouraging. Doesn't change the immediate issue from the entry earlier this afternoon -- that remains a big deal -- but the urine output is really, really encouraging.

Especially given the timing.

Go Christopher, go!

And more important: Thank You, Father.

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So there you have it. '8 cc of pee' is not much. It is actually miniscule when you look at the edema from fluid retention and when you consider that this has been the problem since the transplant.

Please Pray for Baby Christopher's kidneys to start working so his edema can go down and so that he can go home without having to be on continual dialysis for years !

And Please Pray for George and Shannon and all the family as this surely is a very trying and stressful time for them. Shannon has been at the hospital full time every day since he was born on Nov. 30. Surely she is exhausted!

Thanks.

And, by the way, speaking of the family. I thought you would like to see this picture of Christopher's family at his bedside in the Intensive Care Unit where he has been for his entire life !

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