The Christmas collection of Facebook updates

This past weekend has been filled with steps forward and fewer and smaller steps backwards, still enough to shock and lead our timid hearts to fear. With the busyness of Christmas services and travel back and forth as well as plain old laziness and missing being with my two favorite people in the whole world, this is the first opportunity I am taking to collect all the Facebook updates from Gina.

We start on Thursday.

7am. In the realm if compliments I'm pretty sure that John would prefer to be a 'rock star' to a 'perfect little angel' and today the night nurse told me that he did great all night, a lot of secretions but other than that he was a rock star. I'm so thankful that today I get to put up a Christmas tree for him!

8am. The PICU team plan for the day is cpap trials at 10a and again at 2p, two hours each and then cpap over night and extubate in the morning. Infectious Disease team signed off yesterday. Now to wait and see what the plans are from the rest.

7pm. The day shift is stopping by to wish us Merry Christmas, our tree is glowing in the window, John is sitting up snoozing and Mark is getting closer with each passing minute. John's day has been great. He did two cpap trials with no issues, all wounds are healing better than expected and he has spent the day getting just a little better and stronger, we couldn't ask for more. In my family this is called the night before the day before the night before Christmas and we're busy busy busy being good :)

I made it up safely on Thursday night and spent the evening with John and Gina. There were some bumps in the road for John as there was more bloody fluid than we or they wanted to be seeing coming from his ng and g-tube. In the morning we came in to find that they were still looking to take him off the ventilator and had shut off the two iv sedatives in preparation. Then once again we had the reminder that John does not follow anyone's plans.

From Friday.
11am Unexpected is certainly the word for this day, bleeding again and at interventional radiology again and waiting and hoping again. Not as bad as last time but still this is the first time Mark had seen all the blood and so for him it is just as bad or worse. Birk and Charity are with us, Christ is with us.

Through the day John continued to fight on and with the help of the doctors care and the positive outlook going forward I was able to return home to Missouri for Christmas services. Throughout the day friends responded with encouragement and Scripture.

5pm. Thanks everyone, your words sharing the Word help so much. Mark is almost home. Interventional radiology found no arterial bleeds which is good. John is still bleeding though and his temp is hovering at 38 degrees C. Cultures were sent off early this morning and no growth yet. The third unit of blood is hanging and his numbers are holding up.

10pm. Mark is home safe and services conducted and everything is prepared for tomorrow. John has his fourth unit of blood hanging but this one is running over four hours instead of two and his pressures are holding. They keep having to add sedation to keep him sleeping and at that he continues to breathe over the vent and we keep thinking hooray little liver and kidneys, good job chewing up those drugs :)

Christmas Eve continued to be uneventful for John and Gina was reluctant to post much as she struggled with the day and the inability to know what was going to be.

From Saturday, Christmas Day.
3pm. Merry Christmas and God Bless you!

6pm. This is certainly not the Christmas I would have chosen but it is oh so much better than the one I feared we would have. I am hoping John is better and able to enjoy Christmas decorations and presents before too long but mostly I am thankful for the gifts of faith and life given to John and to us and to everyone. Tomorrow I will get back to the minutiae of health updates for tonight I just want to say thank you God for one more Christmas that I can tell John THE Christmas story.

From Sunday, 2nd Christmas Day
7am John's hemoglobin is holding and so we are assured that he bleeding is currently stopped or at least slowed to the point that it can be time to think about other stuff, like weaning the vent and extubation again.I really want to know why he was bleeding this time, I still am not settled with the phrase 'normal GI bleed' but it seems that like so many things there just is no real answer. So for today we are again watching them wean the sedation and ...vent settings and waiting. One of the worst things about getting so close to good stuff and then so scared again is it blows the ability to have decent perspective out of the water, so let me be just honest and say that we are gun-shy and a bit paranoid and hope that some day we will be better and calmer but for today we just are what we are. Mark is on his way here this afternoon and the sun is shining bright and pretty and even heavily sedated John is able to watch his balloons and clamp down his mouth to make it a struggle for the nurses to do his oral care.

8am. John sailed through his first cpap trial on heavy sedation proving that he can breathe while he is stoned out of his gourd, not quite a marketable talent but for today we're easy and we'll take it.

8pm. John did well on the second cpap trial also, he did cough enough stuff up into his tube that he needed help and was ornery enough that when help came he needed coaxing to accept it. He's still doing great and we are headed out to dinner with MarK's brother Paul and our sister-in-law Cam.

11pm. Dinner out was a lovely change, the food almost as good as the company :)
The PICU team plans another cpap trial in the morning and then if cleared by the liver team and John looks like he can succeed then they will extubate sometime tomorrow.
Another night we wait and hope and know that no matter what the night or tomorrow brings that John is eternally safe.

Throughout the weekend we have been encouraged and supported by friends sharing Christ and His Word with us. This is the breath of life to us.

Jeremiah 17:7-8
Blessed is the man who trusts in the Lord,
whose trust is the Lord.
He is like a tree planted by water,
that sends out its roots by the stream,
and does not fear when heat comes,
for its leaves remain green,
and is not anxious in the year of drought,
for it does not cease to bear fruit.