Facebook updates for the 6th day of Christmas

Another day passes with the combination of anxiety and thankfulness; John remains on the ventilator when we had hoped that he would be set free from it, and at the same time he has done so well today that it gives us more confidence for the days ahead.

11am Do you know the kids song 'suffocation' well if so quietly sing it to yourself and you will have a microcosm of today in the PICU, the ongoing saga of 'well maybe we will extubate tomorrow' a tale of love and frustration but not security guards. And if you've read this far and are still wondering John is doing amazingly well and his parents are holding onto their sanity with duct tape and bailing wire because truly you can fix anything with those.

A nurse friend of ours added a few items of universal usefulness, silk tape, dental floss, steri strips and other medical supplies.

Gina replied.
11:30am Oh that would be good, if you restrain staff with medical supplies maybe it isn't quite as offensive as using other things. Thanks Steph, I will keep this in mind.
And so if you're wondering yes rounds have happened and yes John is doing great and no we don't have our own security guard yet but we are going to leave the building for lunch and some sunshine. Of course if John were not tethered down we might have a hard time returning but since the center of the world is here we'll be back rather quickly.

Our friends posted more about alternate uses of medical supplies and duct tape.

3pm Thanks ladies, lol, awesome advice just in time to see that the dialysis nurse today is the same one who ripped the dialysis catheter out of John's leg several weeks ago. Instead of tape though we, John's regular nurse and I are watching him very closely. Mark is on his way back home, John is doing fine and I am knitting for my sanity, maybe I should just learn to knit sanity cause it would be a huge hit!

6pm He had dialysis and in the end it went fine.
Ok enough complaining out of me, I am blessed beyond measure that this little boy is here where I can touch him and that I have the most wonderful husband ever and am surrounded by great friends ...and family and the medical people that are taking care of John are seriously good at their job. Not to mention that John just clearly chose music over reading, oh I love those little talking hands even if they are only up to yes and no at this point!

I have returned to our house and retrieved our dog and am working the days away until I can be back with John and Gina. Happy New Year everybody!

Facebook updates for the 5th day of Christmas

In place of five gold rings we celebrate something that isn't where it's not supposed to be; blood. No blood products needed and no blood coming from anywhere else.

7am Ever watch a scary movie with your hand over your eyes, there are days that this resembles that so very much. Last night as we went to bed John had just the faintest tinge of pink in his ng tube, this morning Mark called the nurse, no blood, oh it's easier to see without my hand in front of my eyes.

11pm The day passed slowly, no blood thank God, lots of secretions to be sucked out and sedation issues but they are working those out. Tomorrow will bring dialysis for possibly the last time and another eval to see if extubation is possible.

Not much to say today as we spent time reading to John, watching him begin to come out of the sedation enough to make some definite hand signs, focus his eyes on one of his balloons, and even grab hold of its string a couple times. Little steps forward while fighting the ventilator and showing that he is tired of the continuing attention from the nurses and staff that is needed for his care.

Facebook updates for the 3rd and 4th days of Christmas

For these two days there are to be 4 calling birds and 3 french hens, but for us there have been a brother and sister-in-law, dear friends who have encouraged us and a pastor to speak God's comfort to us in our anxiety and hope.

Monday was a good day as a whole, but left us with unanswered questions that still concern us.

3pm Uneventful :) No bleeding, no dialysis, no crazy stuff. Not quite ready to get off the vent yet but his face just looks more him today and I have no way to explain why, just that he looks more right.

11pm And it ended with Mark holding John's hand and saying 'squeeze my hand buddy' and watching John's fingers tighten on Mark's.

Tuesday has been a little better, and in some cases the better has led to some anxiety of its own.

8am On the 4th day of Christmas, John's chest X-ray looks really good and it's time to try extubation, we'll know in a few hours if today is the exact right day.

Noon During John's first cpap trial of the day with his sedation completely off he got turned to his side which he breathes the worst on, had physical therapy and was examined by several people and wouldn't you know he freaked out and started hyperventilating and failed. So another cpap trial today but no thoughts of attempting extubation until at least tomorrow. We are not really disappointed just hopeful that he will be ready soon.

10pm. The second cpap trial was better but during it we also ended up having a discussion about sedation, drug addiction and why John appears to be able to have REM with his eyes open, drugs, go figure. At any rate his methadone and atavan were both increased and he has been marginally more content through the evening but just now settling down into actual sleep. I am unsure what tomorrow will hold as far as the vent and such are concerned but John continues to prove by little steps here and there and we are thankful for each and every one of them and for all of you.

John is awake enough at this point that he is waving his hands around opening his eyes and moving his mouth around to try and get the annoying tubes out of his nose and mouth. The team wants to leave their options open as to taking him off the ventilator tomorrow and so they are keeping him minimally but consistently sedated. Hopefully the nurse, who has become a dear friend will have a quiet night with our agitated little boy.

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.

Facebook updates for Wednesday, Dec. 22

Another day full of positive steps and increasing hopes with additional reasons to give thanks to God.

7am 'A perfect angel all night' says the nurse, no fluid bolus to maintain blood pressure, no fresh bleeding and now as I sit here by him he keeps opening his eyes just enough to see I'm here and then tries to close them quick enough I won't see.

2pm The day has continued to be good. When asked about the GI bleed the surgeon said 'done' with a smile and dismissive wave of her hand. John will get a scope in just a bit to make sure he has no rejection going on in his bowel but already we are seeing green, the superior Christmas color, coming from his g-tube and ostomy.

4pm And the good news continues to roll in John's intestines looked really good on the scope, his NG tube is putting out the superior Christmas color as well and the PICU team is weaning the vent and sedation with the plan that if all goes well tomorrow they should be able to extubate first thing Friday morning. Praise be to God!

10pm The rest of John's evening was quiet and good. He still needs lots of suctioning to get the gunk out of his lungs but his oxygen levels are holding great. As I was leaving for bed the Physician's Assistant told me that John was too stable and so there would be no middle of the night phone calls and I should get some sleep, good advice, good night, pleasant dreams and God willing more good news tomorrow.

Thanks be to God for His incredible gifts. Keeping our eyes firmly fixed on Christ, knowing that now is the time of rejoicing and not fearing what may come knowing that Christ is already there and will provide as He has promised.

Facebook updates for Tuesday Dec. 21st

Tuesday was a wonderfully quiet day for John and for us. So much so that I was able to come home and rejoin my congregations in preparation for Christmas services this weekend.

7am The night nurse gave John a bath and this morning he is beautifully pink and brown and smells good and his curls are all clean and in place. I love it when they have time for these things.

11am Rounds have come and gone, they are cautiously optimistic. While it looks like the bleeding is handled there have been so many issues that everyone is just a bit gun-shy and waiting to see if something else happens. We continue to depend on his safety net most and try nit to get too caught up in monitors and numbers yet that is hard to do. For the moment it is a good moment and in that we rejoice.

3pm For the first time in days John's hemoglobin number went up and no blood products needed to do it. Pastor Porath came with the Lord's Supper and for this time things feel stable and quiet, Mark is headed back home in a few hours. Around us it is chaos, 3 rooms on this floor look like the days that John is in major crisis, running nurses, hovering docs and nurse practitioners, crying fear filled families, we pray Lord have mercy for each of them and only wish that there were more that we could do.

6pm The nurse practitioner stopped by on her way out to thank John for being her nice stable patient today :)

10pm Before heading off to sleep I got to visit with the physicians assistant who has been caring for John for several years including all of this course. She is so excited about how he is doing, his liver numbers are amazing, his kidneys number...s show that it is all reversible damage and his intestines look great. She explained more about the coil, it is metal and it is designed so that it will completely clot off the vessel within four days, build irreversible scar tissue in a few weeks and actually become the permanent end of that little vessel within a few months. When I left after prayers John looked beautiful pink and brown, with great blood pressure and pulse rate and most of all he just looked peacefully asleep.

We pray for more and more of these days to come and wish all a merry Christmas.

Facebook updates for Monday Dec. 20th

Today has been a day that on the whole has been better than the previous two, but has had it's own ups and downs, joys and fears.

7am John's hemoglobin has held at 14, the blood coming out has slowed significantly and is darker indicating that it is older and not fresh, his heart rate is beautiful as is his blood pressure, all good indicators that they were successful in stopping the bleed and yet I find myself unable to exhale fully. Lord I believe, help Thou my unbelief.

Part of the morning before rounds was spent with a special nurse who is taking care of the 'wound vac' that is being used to heal John's surgical incision. It was a good conversation where we got to know her and she us. It is so nice to get to know these people that give themselves into caring for others and how they see this as more than a job, more than anything about helping the hurting and sharing themselves with their patients and the families.

11am I think this is no longer a roller coaster but more like a run through the jungle being held by King Kong wondering if my head will pop off before we get to the pretty scenery. So rounds have come and gone. It is distinctly uncomforting to be asked how you're doing, reply 'paranoid' and be answered with 'you have every right to be.' On the other hand I am trying very hard to be comforted with both their guarded optimism, and the surgeon telling me 'we don't often find things we can fix and this time we're glad we did.' I am left with one comfort - Kyrie Eleison.

11pm It is so easy to get lost in fear. I had a nice time out of the hospital with Charity and her mom and then a quiet evening with Mark and John. John's hemoglobin did finally drop to 9 and he is getting a unit of blood now but it's his first since 2am and the output is getting darker meaning that it is older blood so we are trying to get some rest and hoping tomorrow brings better news yet.

As has been on previous days friends shared encouragement and prayers as wells as Scriptures to focus our attention where true peace and comfort in crisis are found.

Psalm 46:1-3 God is our refuge and strength, a very present help in trouble. Therefore we will not fear though the earth gives way, though the mountains be moved into the heart of the sea, though its waters roar and foam, though the mountains tremble at its swelling.

Joshua 1:9 Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.