Sunday, January 2, 2011

A New Years Compilation of Facebook Updates

Happy New Year!!

We rejoice in the work of our Lord and Savior Jesus Christ on John's behalf both temporally and eternally. As we begin this new year and the new things that will happen for John I need to catch up on the past few days of updates.

Friday, New Years Eve started early for all of us.

3am Blood. Again. Lord have Mercy! So far slow and vitals are holding.

6am INR 5.9, that's the liver number we all watched when his liver was necrosed and we were praying it would regenerate, lately his INR has been 1.3 down to 1.1. What is causing this? We do not yet know, cultures are being sent because sepsis can do this. Lord have mercy, Christ have mercy, Lord have mercy.

9am I wrote: Rounds have happened and Dr. Mercer is confident that this bleeding and liver number issue can be managed with blood and blood products. He even agrees with the PICU doctor that it's time to get him off the ventilator. The fears and worries remain though they are much diminished thanks to good info and the calm confident tone of the doctors. Thanks to technology I was able to overhear Dr. Mercer and ask if I needed to hurry back. He said that this wasn't a 'doom and gloom' situation. Thanks be to God who answers prayers.

Noon John was off the vent for an hour and is now back on. His little throat swelled up and is red and sore and so they are going to give him steroids for a few days and then look down there on Sunday and hopefully try again to get him off the vent then. It is my hope and prayer that John will be ready but am glad that they have a way to check.

9pm I had a really good conversation with the GI doc today and he has some ideas and such and will continue to look into this. He is perplexed by it being only the one number that changed and is also worried that there is an issue at the anastamosis that continues to bleed at every little provocation.
Labs at noon and 4p showed the INR to be 1.0 but it is unclear if that is still just the result of the two units of plasma that he got today or not and I am unsure of when we will see a number that is John's own number, but I'll find that out tomorrow, along with continuing numbers.
The nurse read the ultrasound report to me and it sounds like good blood flow to the liver and also a new pleural effusion in the left lung this time but I'll know more about that tomorrow too.
At the moment John is sleeping but just a bit ago he was awake enough to sign yes and no clearly enough to choose to watch you tube videos over just listen to music and to request second plays of favorites. His NG tube is now pulling clear greenish stuff and so the bleeding is past for the moment. Hopefully we have seen the last of it period and not just another break from it. Mostly tonight though I am glad that John stayed with us through all of 2010 and it is my fervent prayer that he reach the end of 2011 with smiles on his face and signs flowing from his hands as he wheels happily through days of school and learning and fun together with us. God bless you all and Happy New Year!

Saturday, New Years Day
7pm Today has been wonderful, getting to hold John for the first time since surgery, oh there are not words to describe but we both had a wonderful nap together in the chair and from 9:30-1 it felt just wonderful to hold him. Charity came and we went out for lunch and a bit of shopping and then got some time to visit too.

8pm Now I wish that I wasn't nervous, but today is the perfect storm for bleeding. Every time John has bled has been proceeded by 1. Dialysis, they just finished up, 2. Clamping the ng tube or removing it, it is clamped and only open to gravity drain occasionally and no suction, 3. Stress of getting ready to extubate, extubation is planned for tomorrow. So of course I am sitting here holding tight to the amazingness of the day and praying that the cycle is finally broken and we can just move forward from here.
The last amazement of the day I want to share is that John is waking to the point of really being John again, he is weak, he is tired and yet is now signing yes and no clear enough for others to see and when asked if he wanted to see friends next week he showed Miss Charity a nice clear yes, we are so blessed.

8:30pm It has been a great way to start the year and thankfully even though there is now blood coming from his NG, g-tube and digested blood from his stoma his platelets are high, his clotting factors are stellar and his hemoglobin is still nice and high too so at least for the moment we are starting this round of bleeding with enough in the right place that hopefully it won't get insane before it gets better.

Sunday, the 9th Day of Christmas.
8am Unamused. With the royal we added on sums up the morning imperfectly at best, cause like every little rotten sinner instead of focusing on the gracious mercy of God in keeping John strong enough to fight this current bleed on his own with no blood products, I'm just unamused at the lack of understanding why it's happening.

11am John is an amazing little fighter and so much more himself with each passing day. The PICU doc looked down his throat and says that he's ready for extubation and the surgeon says that the blood is nothing to get worked up about, it could just be an erosion from the ng tube or anything little like that. I am breathing and knitting and saying prayers of thankfulness for John's strength and being here and all and really really trying to focus on those things.

10pm John is extubated, sitting on my lap with no oxygen on and doing well. He got to sit in dad's lap for several hours and has been able to give a kiss, wave a bit at the docs and sign yes or no for what he wants. He is still very weak and he is also still bleeding but he is undoubtedly John and warm and cuddly and amazing.

We end the day and the weekend filled with the joy of new hope and new possibility. The Lord grant us all a quiet night and a new day that reflects His grace and mercy.


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