Thursday, December 30, 2010

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!

Wednesday, December 29, 2010

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.

Tuesday, December 28, 2010

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.

Monday, December 27, 2010

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.

Wednesday, December 22, 2010

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.

Monday, December 20, 2010

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.

A New Edition of Facebook Updates

The day was so long yesterday that this update comes as the morning light of Monday creeps into John's room with a little boy who is doing far better than he has since Friday evening.

7am Our morning started a bit before 1a when John's hemoglobin dipped to 9, thankfully he remained nicely pink and brown and warm and comfortable. More blood, more plasma and now we start again with a hemoglobin of 10 and wait. Lord have mercy and direct the doctors minds and hands to resolve this.

The doctors chose to try and bring this under control by scoping John and trying to force the bleeding to clot and shut off.

2pm ‎2.5 hours of scoping later the amazing medical team has removed a clot that was trying to fill his stomach and found the bleeder at his anastomosis and cauterized it. There is a rough patch where the suspected ulcer was but it is not an ulcer just a rough spot and it was not the source of the bleeding. So now we wait again if John can remain stable for 48 hours it will be time to start getting him off the vent, waking him up and letting him get on with life. If not it will be time to scope him again and repeat this process again. So we wait, we hope and we pray and we thank God for amazing doctors and medical staff and that ever present safety net!

6pm I wrote - About 2 hours after the last update John started bleeding again. They scoped him again and couldn't get the bleeding stopped. They have tanked him up on blood products and his vitals are still ok. They are going to take him in for angioplasty to try and shut off the bleeding that way. It has more risks, but we pray that this will fix this. The last alternative is surgery, and while that could fix it, they are reluctant to go there unless absolutely necessary.

8pm We are waiting in John's empty room. Pastor Schmitt brought us the Lord's Supper and God's Word 'be not afraid' and yet we find that fear is very very close.

8:30pm The nurse came by to tell us that John will be up in 15-20 minutes, that they believe they have the bleeding stopped. I'll update again when John is here and settled in.

10pm I wrote - John has returned to the room. He is looking very much like a meatball amongst spaghetti. As we watch the monitors as the nurses clean him up and get the tangles out of all the lines we see heart rate and blood pressures that are right where they should be and the angioplasty team told us as soon as they got the coil into place they were able to stop pushing blood in to keep his BP up.

11pm So we close out the night with a little boy who is nicely pink brown and warm, who has been washed up, kissed and cuddled and spoken too as much as we are able and a capable nurse who is watching over him and had promised to call if he appears to still be losing blood. We will certainly admit that we have a very large portion of paranoia but also that we continue to pray Lord have mercy and attempt to sleep.

Pastor Schmitt was a great help and comfort to us here in our time of need bringing God's Word for our ears and delivering His promises to us into our hands and mouths.

There is also a great blessing that we receive from those who are not present with us physically. John is being prayed for around the world and we are being encouraged and helped in so many ways even beyond our understanding. I especially want to thank the people of the two congregations I serve, Peace Lutheran and St. Paul's Lutheran in Slater and Saline City Missouri. They are an incredible group of faithful and loving Christians who have blessed us in ways that are so needed. We thank God for all of you, and pray for His blessings upon you.

Saturday, December 18, 2010

A Mid-Weekend update of Facebook posts

The past 24 hours have been especially fearful, following on a day of steps forward that we thought would not mean trouble to come. We continue to have a reason to pray for John's continued recovery, but are forced to see that the road is going to be long and may also be rocky.

7am John's night was quiet. Sedation is off. Now we wait. Lord have mercy.

The plan Friday morning was to remove the tube that connected John to the respirator.

10am The tube is out! He's doing well so far and no dialysis today too.

You may notice on the days when John is doing well that Gina does not have time to update Facebook when she can have time to be with John.

5pm John is still doing well without the vent and has been able to wake up enough that he could get close enough to making the signs for 'yes' and 'no' that I could understand what he wanted. He is still groggy and while drugs is part of that his kidney function isn't helping it so hens going to get dialysis tonight. He is making it farther between dialysis days and so we are still seeing recovery but at John's pace and not ours, which figures. He has not yet wanted a drink which is actually good because he has 5 days of npo - nothing by mouth - before his anastamosis - connection between his small intestine and stomach - has had enough time to heal before it can handle any pressure.

Gina took a picture of John off the ventilator and I post it here:

Around 9pm things began to go downhill for John. The ulcer began to bleed again to the point where his blood pressure and heart rate began to drop. When they pulled the crash cart to the door of the room Gina called me at home. I grabbed as few things as possible and headed out the door. I set a new course record from home to Omaha in under 4 hours.

Gina began posting this morning again:
8am Another sunrise with John after another night of blood and rushing and crash carts in the hallway and a wonderful friend who sang God's Word to us during the darkest moments and a amazing daddy who dropped all and drove quickly to be with his boy. Charity stayed through to morning with us and Dr Fisher the GI doc who knows John best came in to see his ulcer to and found a huge clot and is consulting with adult GI docs about what to do with a man sized ulcer in a tiny boy body. 5 units of blood later along with several each of platelets and plasma and some new Meds and for the moment at least his hemoglobin numbers are holding and his little cheeks are a nice rosy pink. Kidney and liver numbers are holding too and now it is time to just sit and wait and watch and pray.

A friend asked where the ulcer came from?

Noon The ulcer could be caused by a combo of a gut with the tendency to become inflammatory combined with extreme stress of surgery and recovery course and tubes and such. It doesn't help that they don't know the etiology - the why - of John's guts tendency to become inflammatory. The GI doc is a young thinker whose wheels we can always see turning and he has kind of a dual gift for both research and excellent patient care. He is going to be seeing if he can find notes or samples or whatever from John's essentially dead removed bowel and portion of his stomach to see if there is some underlying inflammatory issue that needs to be treated in a different way. He and the surgeon who is on, another excellent doc who is a good surgeon, a mom, and has been caring for John since he came here are trying to decide what is the plan that will resolve the ulcer the most effectively with the least drawbacks. It is interesting to watch them work through this process it is also rather scary and continually drives back to prayers of mercy for John and prayers of wisdom and fortitude for these docs and the rest of the medical staff. So for the moment the verdict is do nothing and hope John won't start bleeding again, they are watching him very carefully and are expecting that they will give him a bit more blood before this is settled. If he starts to bleed it sounds like angioplasty to stop the vessel that is bleeding is the next best option. The plan is to keep him heavily sedated and intubated through the weekend and readdress things on Monday.

5pm Mark and I were able to get some sleep and get back in here just in time for John to start puking blood again. Labs have been sent. John's ng is pulling blood out of his stomach but it is again full of blood. He is currently the right color and temperature but there is blood on hold and no one doubts that we will need it. Mark is headed home to take care of services and I sit by John's bed waiting.

6pm Our treasured friend Pastor Snyder is taking Mark's services and Mark is on his way back here to be with us. John's hemoglobin is down to 8 and platelets have cut in half to 81, a unit of each is on it's way and more being put on hold. Lord have mercy.

10:30pm One unit of packed red cells and one unit of platelets and at the moment John is warm and the correct shades of pink and brown and resting comfortably so it's time for us to get some rest knowing that the nurse will call us if John needs more blood products or bleeds from his nose or mouth again or if anything is amiss. Thanks for keeping us in your prayers and for encouraging us and helping us, as hard and scary as all of this is it is more bearable because we are surrounded by such wonderful people.

Thursday, December 16, 2010

Today's Facebook Updates

A month has come and gone since John received the offer of organs, and how life has changed and yet we are hopeful that the little boy that we have grown to know and love will be returned to us.

7am The lights are coming up and the hall is filling with people for shift change. John's night was quiet and restful and this morning he looks more like himself than he did yesterday. Today if it were not for the setting and tubes and such it would be easy to believe he was just sleeping.I do not know what today will bring, for the moment I know that John's hemoglobin is 13 which means that any active bleeding has been stopped or slowed to an insignificant trickle. His white count is still elevated but cultures aren't growing anything yet and he has no fevers and clinically he continues to improve. Yesterday he sat up for 4 hours, today I am hoping we can get in 6.

Noon After a good bath and getting all his dressings changed and his wound drain pulled out John is sound asleep sitting up on a cpap trial, essentially breathing on his own with a little oxygen and pressure to make up for having to breath a tube. He had to have a few stitches put in to hold his central line in but did well with that. Extubation is up for debate, no one doubts he is ready and yet everyone is concerned about how many secretions he has and of course having the tube in let's them help suck them out but the tube itself creates them so we wait. No dialysis today, his kidneys are still weak but cleaning enough to wait one more day, he will get more Lasix today and we'll see what his kidneys have accomplished in the morning.

The entire atmosphere of John's room has changed, the nurses stop by to talk and laugh a bit and it is so much more relaxed, John is still not off this tightrope but seems to have picked up both speed and strength in his forward steps and we praise God for each step and for the net continually in place!

4pm After discussion extubation has been slated for sometime in the morning. John has gotten 5 stitches, 2 to attach his central line so it won't fall out and 3 to close the hole where his wound drain came out. He has also gotten his art-line removed, this was the line that showed them John's blood pressure every few seconds and he no longer needs to be that closely monitored. Most exciting to me at the moment is that he has green stuff coming out of his ostomy, this is the first time since transplant that his new little bowel has put out anything other than blood or digested blood.

Gina and I talked as she went back to the room to go to bed and told me that he has had a long and productive day. Not only has he had the stitches and sitting up for longer today than yesterday, he has also had at least one CPAP trial where the switch the settings and John has to breath on his own with just a little support to keep his airway open. John came through this like a trooper and while doing it appeared to be sleeping calmly and peacefully through a test that when they did it the last time, on the 2nd of December, he was not happy about one bit.

We give thanks to God for all the kindness, generosity, encouragement, and prayers. There are so many that share this on the internet, and on prayer lists, and all over the place that it is simply amazing what the Lord is doing. Here is a picture that we posted on Facebook yesterday, but I forgot to include it in last night's update.

Wednesday, December 15, 2010

Today's Facebook Updates

The end of today finds me where I began it, at my computer copying Gina's updates through the day. I am glad to do it and rejoice to shre the news that shows God's love and grace at work in John's life.

8am The sky is light but overcast and John is waking up enough that looking in his eyes makes me feel like I need to explain things. He doesn't seem terrified like before just wondering, it reminds me so much of meeting him in the NICU 7 years ago. His night was quiet yet his lab numbers indicate something continues to bleed, Lord have mercy.

Noon John is sitting up! Yes, well ok John's bed is holding him in a sitting position but still today the first day in a month that he has not been laying down flat, it's exciting. Of course his white count is a little elevated so we are getting cultures today but still he's sitting up and all his monitor numbers look beautiful!

3pm I cannot believe how much I enjoyed watching John try to watch the balloons at the foot of his bed, just amazing. Since then he has had a bit if a rough time as they put a new dressing on his belly incision that has a vacuum attached to it and takes quite a bit to attach and such. By the time that was done the nurse had given him all the sedation and pain Meds he could have and finally he is asleep.

A friend of ours, Stephanie Snyder, is a nurse and she shared some information about this with us. "It has helped heal every wound I have used it with quicker than conventional dressings, plus any drainage is sucked away rather than letting it repopulate on the wound. The suction also increases blood supply in the area. They have smaller ones for home care use. If I can change the dressing, it must be easy."

9pm The evening is ending with John having put out more urine in one shift than whole days in the past, we ...will find out in the morning if he is cleaning better or if he will need dialysis again.

We've not seen any more frank blood but still a lot of old blood getting pulled out of his stomach. Labs through the night and in the morning will tell if the ulcer has ceased bleeding again.

And now for the exciting rumor - if all goes as planned through the night extubation in the morning :)

I leave you with wise words from Charity's Pastor, the kingdom of God is not a what you see is what you get thing, even when we can't see Jesus he is with us bearing our sins and sorrows and carrying us through good days and bad.

What else can I say to that, but Amen.

Birthday and Baptismal Birthday Updates from Facebook

As I sit in my study at home and hear word from Gina about John's condition this morning I can't help but thank the Lord for the wondrous work He continues to do. I do not understand His thoughts and ways and yet I cannot but see His love and faithfulness that surrounds John, Gina, and even me.

There were few updates on Monday as we wanted to spend as much time holding John's hand talking to him and being together.

8:30am Doing the first update on John as Gina is at his bedside giving birthday cuddles. He is now receiving regular breathing treatments and "beatings", the percussive chest message to break up congestion. He tolerates it, but it wakes him up more than has been usual. Right now he is blinking his eyes and moving hands and feet and seems to be fighting his way out of the snow and fog that he has been in and under since transplant.

John Did well through the day, it was uneventful and we received lots of encouragement and Happy Birthdays via Facebook.

Tuesday was a longer day, both in number of updates and it seemed in the challenges that are ever present in John's course to what we pray is recovery.

8am Today we celebrate John's Baptismal birthday, 7 years ago tonight from a styrofoam cup with shaking hand and voice Mark spoke the Words and administered the Sacrament that gives peace to us each day. John is getting weaned on the vent rather quickly heading to extubation again, we're of course hoping that he makes it this time around. He will probably need dialysis today and who know what else. But for the moment we are rejoicing in his Baptism and that he's awake enough to wiggle his toes for the nurses when they ask.

10am A talk with the PICU doc and we know that John is being very easy to vent and is very close to being extubated from a Lung standpoint. We also know that his heart and vascular system have recovered quite well and they are no longer concerned about that. Dialysis again today, his urine output slowed and is now picking up again, but he still needs this help. The thing which is of most concern at the moment is that he had a bit of blood out of his g-tube last night and then today during dressing change gushed blood out around his g-tube and threw up some too. It may very well be that his ulcer is bleeding again, could just be because his platelets got too low but we won't know for a while. They did put his NG tube back in, as a rule I am very anti-ng tube, but for John's g-tube to handle letting stomach contents out he needs to be up, at least sitting up, it's always been that way for formula to go through to and while there was some hope that a new intestine would resolve that it is indeed still the old stomach so we wait to see. We hope that John is stable enough that Mark can return home, that too we should know in the next few hours.

Noon Rounds have come and rounds have gone and I will readily admit that after all the days of rounds where it was grave discussions of what blood pressure Meds to try next or when to head back into surgery that today's rounds were a bit amusing. Mostly a discussion of the merits of carafate to help John's ulcer and what kind of bed would be best for him to be on. We continue to wait on news of blood and when dialysis will start etc but for the moment we are able to sit in John's peaceful room recalling the words of Pastor Schmitt who brought us the Lord's Supper and news of his congregations desire to help us as well. Every day we see God's hand of mercy, John's improvements, staff who share their faith with us, other believers who provide comfort and support even at the darkest moments we see the glimmers of God's Love and hope for this life and the next.

2pm John has been transferred to a new bed, smaller with less air so it makes him work a little more to support himself. Dialysis is running now and going well. He has gotten platelets and carafate and now is getting blood to see if they have control of this ulcer yet. Mark is still here, waiting until things are a bit more stable but hoping to go before evening.

5pm Dialysis total 1700+ mls off the little boy :) A new med to make his platelets extra sticky and try to clot off the ulcer and now a nice nap.

9pm Mark is driving home, John is sleeping. His white count has climbed some today and now his temperature is hovering a little higher, not yet febrile, and I'm ready for him to be awake and excited to see all the mail that is here. I will probably spend the evening looking up hymns and verses that I've received over the last almost a month since we started this.

11pm Mark is nearly home, John is sleeping rather peacefully with some of the best numbers I've seen and I am soon headed to bed. Thanks for all the prayers and encouragement and here's hoping tomorrow brings another day of slow forward steps.

Each day for us is a brand new day, another day past that we have lived with and loved our son, and another day to do the same, knowing that at some point to come we shall share in the everlasting day to live with and love all those who have received and rejoice in the Love of Christ Jesus our Savior.

Sunday, December 12, 2010

The Sunday Evening Post

Today has been a day a lot of little thanksgiving. Thanksgiving for more wiggles and less red face, for more fluid removed by dialysis and for less times that any monitor alarms went off. It has been a generally uneventful day, and yet we find ourselves exhausted. Tomorrow is John's birthday, something that last Monday we could not see. My son's gift to me for his birthday is the appreciation of now. Now is the time to rejoice, even if grief does come at some other time, now is the time to hold close those we love, even if tomorrow comes and we must let them go. Gina's Facebook updates follow.

7:30am We have thought for years now that John's confirmation verse would be 'I was glad when they said to me let us go to the house of the Lord' so it seems just a little out of sorts to not be taking him to his favorite place on Sunday. We are thankful that he had a quiet night, his weight is down and his urine output is up and all looks the same or a bit better than last night.

9am John's face is a smidge less red today and all things remain the same or are just a bit better, Mark is reading Narnia to John now and as the day goes we might even finish The Horse and His Boy. More dialysis today, everyone is encouraged that he eventually won't need it.

6pm Dialysis went well, they were able to take 1136ml of fluid off of him and we can see a difference in how much pressure the vent is using to move air into his lungs. He did so well, it was amazing to watch. Pastor Schmitt came to visit and do Matins with us and off and on during it John would open his eyes and look around. He spoke of having patience to wait on God, I'm pretty sure that every ounce of patience I have right now is rained down from heaven because I have none of my own.

9:30pm Gina was too tired to post a last update and so I am glad to tell you that John is tolerating more adjustments to his positions and they are starting him on a medication through the ventilator that should help, with the dialysis he has had, move more of the fluid away from and out of his lungs which should help make it possible to wean him off the ventilator. This too will take the time it takes.

We have been blessed by wonderful Pastoral Care today as well as the encouragement and prayers of friends that are shared here.

Ps. 118:1 Oh give thanks to the Lord, for he is good;
for his steadfast love endures forever!

Eph. 3:16-19 That according to the riches of his glory he may grant you to be strengthened with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith—that you, being rooted and grounded in love, may have strength to comprehend with all the saints what is the breadth and length and height and depth, and to know the love of Christ that surpasses knowledge, that you may be filled with all the fullness of God.

Ps. 103:4, 13-14, 17 who redeems your life from the pit,
who crowns you with steadfast love and mercy,
As a father shows compassion to his children,
so the Lord shows compassion to those who fear him.
For he knows our frame;
he remembers that we are dust.
But the steadfast love of the Lord is from everlasting to everlasting
on those who fear him,
and his righteousness to children’s children.

Saturday, December 11, 2010

Today's FaceBook Updates

Thank the Lord and Sing His Praise. Today was uneventful for John and a lovely day to be indoors with no need to make any trips or run any errands. The weather outside is still frightful, and we rejoice that there are no plans for any adventures.

7am Each night after evening prayer and before I say goodnight I tell John that I expect him to be here in the morning, each morning I am delighted that he is here. He needed some extra sedation and pain meds to get through the night but nothing else and so we wait news of the plans for the day. Our plans are to read to him, to hold him as much as possible and make sure this day he knows that he is loved.

9am Rounds have happened and Dr Mercer is on this weekend, it's nice to see him and nice that he gets to be the one to watch over what will hopefully be uneventful days. They have nothing really planned just watching his wound drain carefully to make sure his anastamosis has remained sewn together, maybe some Lasix today and dialysis again tomorrow.

Noon Good news should now come in dribs and drabs and so updates will probably be as slow and small. For the moment the most amazing thing is John not only tolerated a bath well but is turned up on his side, all the way on his side for the first time since transplant and doing well.

3pm This time John is not only turned up on his side but we also turned his bed on angle and he tolerated it well and is sleeping peacefully. The other little good news is that John's labs are now only daily, he will get gases done every six hours still to see if he can be weaned on the vent but electrolytes and blood counts will only be done in the mornings starting tomorrow. That is a huge change it has been every 6 hours, sometimes every 2 hours and at times when things are very bad every 5 minutes.

7:30pm One more little step - at least for the past several hours and right now John is maintaining his own body temps without needing a heated blanket to help him.

9:30pm We enjoyed a nice quiet day with John who would occasionally open his eyes up some like he was looking for us and be comforted that we were near by. I was finally able to relax enough to watch a few episodes of Star Gate with Mark, the firs...t time I've been able to relax much at all since this all started. It was nice to have a day in which we were more hopeful than fearful and in which every so often the thought of what life with John and no tpn or pumps and such could look like flitted around then corners of our brains. Thanks for all the prayers and encouragement, we continue to pray Lord have mercy and thank Him for the mercy we have seen.

Today our friends on Facebook shared more encouragement from Scripture and prayer, and so we share it here as well.

A friend posted this after Gina's first update this morning.

I thank you, my heavenly Father, through Jesus Christ, Your dear Son, that You have kept me this night from all harm and danger; and I pray that You would keep me this day also from sin and every evil, that all my doings and life may please You. For into Your hands I commend myself, my body and soul, and all things. Let Your holy angel be with me, that the evil foe may have no power over me. Amen.

Another friend shared this from a group that shares Bible verses on Facebook.

Proverbs 4:20-22 My son, be attentive to my words;
incline your ear to my sayings.
Let them not escape from your sight;
keep them within your heart.
For they are life to those who find them,
and healing to all their flesh.

Bits and Pieces - Facebook updates from Friday

These updates are being transferred the morning after, there was simply too many things to carry back to our room in the Lied and so tired that I simply forgot the laptop until we were almost to the room.

Yesterday began and ended quietly for John, another day that we have gotten to spend with him.

8:30am Bits and pieces. The surgeon tells us that John needs to string together good hours and through the night he seems to be doing just that. He is off all blood pressure medicines right now. He doesn't sound as fluid overloaded to the respiratory therapist. His urine output through the night picked up a bit.He still has some huge battles, his kidney numbers are still slowly creeping the wrong direction but his liver numbers are slowly moving the right way. He still is having a very hard time maintaining his own body temperature but his blood numbers are holding steady and his white count is trending in the right direction. It is a another day of wait and watch. We pray it is another day of boredom, we are becoming huge fans of boredom!

A Friend on Facebook, and fellow knitter, Jodi, asked if Gina needed any knitting supplies.

9:30am Thanks Jodi, at the moment I have plenty and seem only able to make the same thing over and over. I'm looking forward to John's further improvement and getting back to socks and such things, I really want to knit him and I gloves but that's just beyond my mental acuity right now.

10am When they were in here changing the dressing for John's belly he tried to open his eyes, moved his mouth and 3 fingers on his left hand :)‎5 ounces, doesn't sound like much but it's a cause of joy because it's 5 ounces less that John weighs today!

11am Today is the very first day since transplant that John has been stable enough to share a nurse, his nurse has another little guy down the hall too. If they start dialysis that will change even if he does well with it, but for now we are so thrilled that his nurse is able to divide her attention.

12pm I am excited! I finally found someone to ask about his face is so red lately and ok there was some medical stuff in there but basically it came down to they think he's becoming a Husker fan :)

(John looks like a little skier just in from a long day on the windy slopes. His face is red and he is wearing a knit cap with snowflakes on it, sent from Montana by John's Grandma)

12pm John is going back on dialysis today, even with the progress he still needs the extra fluids off sooner rather than later. We are comforted hearing the surgeon say 'this is the kind if renal failure that is recoverable' he is not one to speak lightly of these things. We are encouraged to see him encouraged and yet we are still most comforted knowing that John is firmly and inseparably in Christ's hands.

6pm ‎2 1/2 hours of dialysis, about 500 mls of fluid removed, 740 mls of blood cleaned and not one incident of low blood pressure, absolutely astounding! We praise God and sit in awe at His work and continue to pray for His mercy.

10pm The day has been exactly what it needed to be - uneventful, for which we are very thankful. We leave this night with John in the hands of a good nurse and in a better state than he started the day.

We also want to share the encouragement of Scripture and prayers that we received through the day from our friends on Facebook.

Isaiah 12:2 " Behold God is my salvation;I will trust, and will not be afraid; for the Lord God is my strength and my song, and he has become my salvation."

Gen 4:10-12 "Oh Lord who gave Moses his mouth and these doctors and this medical staff their skill, grant them excellent use of their skills to the good of John and his family and all the patients they attend to this day. In the name of Jesus, Amen."

As the days go by Gina knits and we read to each other and to keep my mind and hands occupied she got me a little art project and this is the result.

Thursday, December 9, 2010

Today's FaceBook Updates

Thanks be to God that we have had a quiet day today, and we continue to pray for quiet and uneventful days to come. That will be the way of things for the current time if we are to see John recover and come through this challenging experience.

9am The night went rather quietly with me only coming over once at 4a. John was distinctly unhappy when the nurse was doing his routine even hours care and it dawned on me that his hearing aid battery might have died. That's what it was and the rest if the night went much smoother and this morning finds him down to one presser and holding steady. We still have no answer as to whether he will go back on dialysis or not, but his weight is 12 kilos too high due to fluid so it's looking more and more like he probably will even though he is not having remarkably worse kidney function numbers. The plan for this day is to be extremely boring, it's at least or goal.

11am Rounds have come and gone. Dialysis is still being considered but holding off a bit longer, other than that John is progressing well but still very critical and tenuous. Mark was able to ask the surgeon about going home and the surgeon told him that 'he would be to nervous to send him away right now, things could still change in a heartbeat.' I am sad that John is still that sick, I pray that each heartbeat brings him more strength and stability but I am very selfishly happy to keep the other half of my heart close enough to touch.

9:30pm John ends this day one tiny baby step ahead of where he started with regards to holding his blood pressure steady and a tiny little wean on the vent. He is still needing help maintaining his body temperature and his little kidneys, while still putting out urine are still not being able to do their job entirely. We are thankful that we had one more day with John and pray to have another, and a nice long boring one at that!

Today's FaceBook updates also demonstrated a reality that we are seeing personally here in the interactions we are having with doctors, nurses, and hospital staff. Faith is becoming more transparent and intentionally shared with us as John's parents.

Our friends on FaceBook shared a special Bible verse and prayers that were part of their Advent Worship last night. As Gina begins to get some much needed sleep I add these for your meditation and prayers.

Psalm 68:3 The righteous shall be glad;
they shall exult before God;
they shall be jubilant with joy!

Lord God, You have called Your servants to ventures of which we cannot see the ending, by paths as yet untrodden, through perils unknown. Give us faith to go out with good courage, not knowing where we go but only that Your hand is leading us and Your love supporting us; through Jesus Christ, our Lord. Amen.

O Lord, God, the life of all the living, the light of the faithful, the strength of those who labor, the repose of the blessed dead, grant us a peaceful free from all disturbance that after a time of quiet slumber we may by your goodness be endued in the new day with the guidance of your Holy Spirit and enabled in peace to render thanks to you, through Jesus Christ, your Son, our Lord, who lives and reigns with you and the Holy Spirit, one God, Now and forever. Amen

Wednesday, December 8, 2010

Remains of the day of FaceBook updates and the efforts of wonderful friends.

Gina is getting some needed rest now, and John is resting as well with the help of sedatives and blood pressure support. Below is the last update for the day as well as a report of the efforts of friends to encourage and support us in this situation where things are so very terrifying for us and so very filled with the Joy that is only in Christ Jesus.

8pm I can't believe it's dark already. John's day has been nice and quiet, no blood products, no doctors or nurse practitioners hovering, and just a few little purple lines on the vent to let us know that he's fighting his way through the paralytic. Charity and the kids came to see us today and Mark is right next to me and and John's room is quiet and peaceful.

John's 7th Birthday is this Monday, the 13th of December, and there have been too many times since the 15th of November that we feared he would celebrate this birthday with Christ in heaven, including this past Monday. Yet by God's mercy and grace we are day by uneventful day being given hope that he will be able to celebrate his birthday with us here, and of course with Christ.

A number of our friends are circulating a FaceBook Status update inviting people to send cards for John's Birthday. We are so thankful for all that they are doing for John and the love and encouragement that are being shared with us. For those that would like to send a card and for those that are doing so; John loves mail so much that we are and have been saving all the cards for him to open when he is finally awake and ready to enjoy them, even if it has to wait well past the day of his birthday.
Here is the address: Thank You so much!
PICU - John Hass
The Nebraska Medical Center
982145 Nebraska Medical Center
Omaha, NE 68198-2145

Another friend of ours is blessing us with the benefit of her own efforts:

Wendi Lankister posted, I have a friend, Ageena Deneen Hass , whose beloved little 6 year old boy, John, had a triple organ transplant on Nov 15. He has had many ups and downs since the original surgery. Read about it here: In an effort to help the Hass family, I will be donating a portion of the s...ales of Mary Ann's Beans to the HassFund. So, order away and give a double gift this CHRISTmas season! If you prefer to simply make a donation, donate via Paypal to THANK YOU!!!

All of you who have been praying, helping, being there for Gina when I was back home, being there for me while my heart and mind have struggled with being two places at the same time, and for everyone that has followed John's amazing story and been blessed through sharing this life with our son; We thank you and pray God's richest blessings in Christ upon you.

More Repost from Face-Book Updates

With the exhaustion of the day yesterday I was too tired to transfer the updates from Face-Book. Here is yesterday's updates and the news we have received so far today.

8:30am When the sun comes up the morning after a loved one dies it feels rude, and wrong that the world can go on without the one we love so much. This morning as I sat in the dark waiting and watching for the sky to lighten and the sun to rise I could only think how thankful I am to have one more morning with John in it. John's night was quiet, the bleeding hasn't stopped completely but it is slow enough that no blood products were needed to get him through the night. He is on two blood pressure meds and neither is maxed out. Today we wait and watch and hope that the backwards slide has stopped or at least slowed tremendously and that the corner is close at hand. He has continued to pee pee through the night, but is already getting puffy and behind so may end up back in dialysis. Time will tell, now we wait, thanks for waiting with us.

2:30pm Lasix was given and we have yet to hear back about whether or not John will need to go back on dialysis. They have been able to slowly slowly wean off the pressers and he has been rather stable today and the surgeon tells us that if we can string together another 24 hours this good he will be excited. I am praying for him to get excited :)

7:30pm John is still fluid positive, having taken in more than he's put out, for the day but he has done well enough that he gets to stay off dialysis through the night. He still isn't moving even though the paralytic was stopped earlier in the day, but it took quite some time last time and so I'm trying to wait patiently. Pressers are still where they have been for most of the day but he still isn't needing blood products and is clearing up his lungs some too. Already we have seen proof that the new little pancreas has made itself at home - yesterday his blood sugar was over 300 from all the stress and steroids and they gave him some insulin, then later in the day when again it was time for another big steroid dose they were concerned that he would need more insulin and nope, little pancreas to the rescue blood sugar was 78 :)

11pm We head off to bed tonight with Of the Father's Love Begotten on our hearts and minds and the joy of seeing pee in a catheter tube and a warm little boy who is such a pretty color tonight.

Wednesday - Today
4am ‎30 to 60 ml/hr of urine output, all bleeding continuing to slow and pressers at the turn off level. I don't even know how to type THANK GOD big enough. The surgeon who is on right now has a beautiful Australian accent and yesterday he told us that if we knew a 'urine dance' we should use it, evidentally John's kidneys were listening and are dancing away.

10:30am John has continued to make pee, we are excited. Just talked to the kidney docs and while his kidneys are still quite weak and not really doing a great job of cleaning his blood there is not a plan to put him back on dialysis immediately, just time to wait and watch. John is still needing help maintaining a decent body temperature and blood pressure and I was worried that it was continued sepsis but the nurse practitioner explained that he has just been through so much that he is just very very weak and now needs time to rest and heal without going back to surgery and stuff and that he needs a lot of time. The PICU doctor relieved my worries about John not moving yet, because there is no dialysis running it is his little tired kidneys that are trying to clear the paralytic and so even though it has been turned off for 24 hours he is still drugged from it. It was the tech though that had the most profound statement of he day, we were talking and in midst of conversation I said that we were seeing so many blessings around this I just wish that it wasn't my child in the middle of it and her reply was 'don't you think that Mary felt the same way' and went on to talk to me about how much Mary's mommy heart would hurt watching her child suffer and then gave me a few encouraging passages about suffering and then had to return to her other duties. In the midst of all this what a blessing it was to speak with her this morning.

I will be reposting the rest of today's updates later tonight when we are ready to go to bed.

Tuesday, December 7, 2010

The Father's Love From All Around

Of the Father's Love Begotten
Ere the worlds began to be,
He is Alpha and Omega,
He the source, the ending He,
Of the things that re, that have been,
And the future years shall see
Evermore and evermore.

Parts of this verse ran through my head over and over yesterday morning, and again this morning as I sat next to John's bed watching the sun lighten the sky and holding his little warm hand and running my finger through his curls.

Today the transplant coordinator came by and told us that she thought the worst day of her life was the Tuesday that she sat with us through surgery to see if they could save John's life and yesterday topped it. She also asked us just how many lives this child had, as they were all convinced that he was gone yesterday.

Perspective is a weird thing, right in the middle of the moment it is hard to see, to remember other things and times. As we sat yesterday with the knowledge that John's brain was okay but that the chances of saving him in surgery was slim it felt like my brain was frozen inside. Earlier I had been able to remember the Kryie, even the Lord's Prayer and the Apostle's Creed floated through my head from time to time. But as I sat here in this very chair with the mixed emotions of being thankful that his brain was okay and knowing that they didn't hold out much hope to save him in surgery and the visions of blood flowing out of his mouth and nose through the night and the look of terror that he had when it started and before they turned up both the sedation and put the paralytic back on, my own mind was frozen stiff.

Pastor Porath came and read to us and prayed with us and I remember bits and pieces of what he said and read, but what I remember most is the effect that his words, his use of the Word had, a relaxing of mind and body, a returned ability to think, to pray and to hope. I was reminded again of several things all at once, first just how important it is to have a bank of the Word stored in my own heart and head so that it can flow in these times when I am alone and how important it is for us to speak the Word to each other. My ears needed to hear the Word, Pastor Porath was here for me and for Mark, Pastors everywhere are here for that but we as Christians are here for each other too and it is the Word spoken and written and texted and emailed and facebooked to me that holds me tight through these days. When I stand in church it is not only the Word spoken by the Pastor that goes into my ears and soothes my aching heart but the Word spoken and sung by the believers who surround me.

Thank you my friends, my family, thank you for surrounding me with God's Word and His love in all that you have said and done since we started this road.

Monday, December 6, 2010

Massive repost of this weekends Face-Book updates

This starts on Saturday morning and continues through tonight, Monday, after 10 pm. This has been a roller coaster ride of activity and emotions and continues to show just who is in control of these things and where our hope lies in all of these events.

7am Food and coffee procured, cafeteria people updated on yesterday and now in John's room. He is asleep, well at least he looks it. They had to go up on the oxygen level and the peep-amount of pressure the air goes in with, because he's again a little fluid overloaded from surgery and all the blood products it took to stabilize him after surgery.This is not permanent damage, they are already being able to wean down some and his blood pressure is holding beautifully so they are being able to go up on the dialysis rate some to start pulling fluid back off. As scary and as terrifying this all can be at times it is an absolute marvel to watch what they can, will and need to do to preserve this precious little life, especially when I look at the ages of people, tech and Meds involved and think that all this was being put in place well before John was born and quite a bit before I was too. Our God is gracious and merciful and the gift of life is worth every effort to preserve it. Thanks for the reminder Diane and thanks for being with me through this yesterday, it is one of the hardest things I ever do to watch John be wheeled away from me and then to see them fighting so hard to keep him alive when he is back, thanks for making it easier to stand and watch.

9pm Thanks for the reminders, prayers and encouragement. John is ending this day about where he started it but with lungs that are a little clearer a whole day of sleeping and not being really scared or hurting, for which I so thankful and rel...ieved. I look forward to what tomorrow brings and that Mark is coming in the evening makes it even better. Time in here is surreal, it runs and crawls with little rhyme or reason and so while it's only 5 days since he was last here it feels like weeks on end and his being here tomorrow something akin to waiting for Santa to come.

9am John is resting peacefully today, the sun is shining in his room through the windows and it's nice and calm in here. His lungs are kinda chunky and so they are suctioning quite a bit but other than that he is mostly just resting and healing. He squeezed my hand through most of morning prayer, it's nice to know he's in there.

11am The amazing news of the day is that John's bilirubin is down to 19, his eyes are still yellow, but no longer glowing, a lovely indication at just how stellar of a job his new little liver is doing in there. The confusing is that again we are fighting to keep John's blood pressures up, no answer as to why at this point, just more questions and more waiting and wondering. He is not in danger of losing new organs or brain function but may end the day back on some blood pressure medicines.

1pm Um definitely liking and not liking what I'm watching today. Not yet counting the hours 'til Mark gets here, but I will be when he gets on the road.
Again two directions, John's blood oxygen level was so good that despite nit having planned to turn his vent settings down they had to do so anyway and at the same time they have had to start dopamine. We know that there are three bugs growing in the culture taken from the peritoneal fluid, a gram positive, a gram negative and a yeast. Again it looks like we might be chasing after an infection instead of being ahead of it and again we sit praying Lord have Mercy and hoping that the medical team can get ahead of this one.

3pm Sepsis. Kyrie eleison.

Shortly after a friend who is a nurse commented, That's what I was hoping against. Probably a gram negative one causing the issues. I am sorry. Prayers ascend.

Gina replied, I was too, at this point at least we are not coming into it from as far behind but still my heart just sinks knowing what I'm looking at. After Friday the surgeons were expecting it, I suppose I should have been too because post surgery on Friday was a mini version of post surgery on that first Tuesday.

5pm Sadly it looks like at least some of the bugs are growing in, I'm seriously voting for out! At the moment they have started a very small dose of vasopressin and are both working on going up on the dialysis rate and weaning of...f the dopamine which didn't seem to be helping anyway. He is currently about 2 liters positive, meaning that he has taken in 2 liters more than he has gotten rid of since Friday. He is still able to elevate his own blood pressure when aggravated an ability which he lost early on in the last sepsis episode. We are still on the getting worse end of this, but it is worsening at a far slower rate than last time too, so while still worried and concerned I'm not yet scared out of my brain. I am however counting down the hours until Mark will be here!

9pm Mark is safely here with us. John is taking steps down into the valley of sepsis, dopamine is maxed out, other pressers are being tweaked and started and fluids and such are being planned and suggested. So far he is still not needing higher settings on the vent but is no longer tolerating the dialysis machine pulling off any fluid. Lord have mercy.

4am Waiting for the sun to come up on St Nick, thankful that John is still here with us and not yet with the real St Nick. A long night, much blood on ways and from places and in amounts that are unfathomable to my mommy brain.John is chemically paralyzed, heavily sedated and being held on his tightrope by God through the hands of many dedicated professionals who have worked tirelessly through the night. Lord have mercy!

2pm The day progressed from awful to worse. Most of the night we spent holding cloths over John's nose and mouth trying to catch the blood that was pouring out and hoping that it would clot off and stop. Morning came and with it came a new fear..., instead of John's blood pressure being too low, suddenly it was too high with no apparent reason and his heart rate too slow, classic symptoms of a massive bleed into the brain. John was taken down to CAT scan and we waited outside the door for the answer, either he was going back in to surgery to find and stop the bleeding or he was going back to his room where we would discuss options I don't even want to contemplate. The news was his brain looked fine and so they were off to surgery with some hope that they might be able to stop the bleeding and save him yet again. Charity sent her Pastor to be with us and he waited with us through surgery and helped us to remember God's promises and pass the time. We were all delighted when Dr Fisher came in with a huge grin to tell us that it was a bleeding ulcer and they have a medicine plan and 2 back up plans to care for it so that John will get to use his new intestines. John is still septic, there is still quite the battle ahead but for the moment while yet perched on the tightrope it does seem that he is not dangling so precariously over the edge.

5pm I posted, Update from the dad side. In the midst of darkness rays of hope shine. John's kidneys have picked up a bit, even the nurses were ready to do the pee pee dance. Even paralyzed his heart rate responded to the nurses care and when they checked his eyes they were very responsive to the light. He needed more sedation, but he is still in there.

7pm The sun has set and it is dark outside. During the night I just kept praying 'one more hour, one more sunrise' and tonight I am privileged to sit next to John's bed as the nurses change shifts and the doctors peek in for one more time before they head off to try to sleep.tonight my only prayer is thank you, thank you Lord for having mercy on me and letting me sit by John one more night!

It is now after 10pm and John is in the capable hands of the medical team and the more capable Hands of His Lord and Savior, Jesus Christ. He has remained steady and needed only minor additions of blood pressure medications after nursing care and being repositioned. We pray, O Christ grant us a quiet night and deliver us through these dark times by the light of Your grace. Amen

Friday, December 3, 2010

Repost of today's Facebook updates

Today has been a roller coaster, but we are concluding it riding a little higher and smoother than we began it with lots of track ahead.

8am John was awake most of the night but is at present really sleeping. He failed the midnight cpap trial in such spectacular fashion that I am convinced he is not only still the little stubborn little boy I've been raising but that once again he is fixing to prove that either he drives this bus or no one will. It looks like it is going to be a wild day.

9am Things are already some better this morning but getting to see the nurse practitioners and doctors will help or lol maybe not, but it will still be.

11am The nurse practicioners have come and gone. Even though John is so much smaller he still has a good deal of edema on his chest wall which makes them think he is not ready to be extubated yet. His fascia, the layer underneath all the skin, fat and muscle, under his incision keeps developing new holes and will need to be surgically repaired this afternoon. Other than that today and I would guess through this weekend is supposed to be 'benign neglect' in other word- leave John alone and let him rest and heal time.

5pm John's surgery went well. They washed out the old blood that had been oozing out for days, found a spot where 4 stitches that attached his old stomach to his new intestine had come loose and repaired it and was able to close up the fascia that had been sewed shut when he was swollen and was developing gaps between the stitches when he shrank.Coming back from surgery he did fine, but in the room he started to crash because his little body decided to do some massive fluid shifting and so his oxygen levels and blood pressure got very low again but with the quick moving and thinkin...g of the staff they were able to give him blood, fluids and such and bring all levels back up quick enough that there is no renewed concern about losing organs. I was very glad to have Diane and Charity here with me and to be able to call mark with the news that while it was scary for a bit it was better and John was recovering well.

7pm (Responding to other's comments) Jenn I'm not so sure about the amazing part, I just keep going from one thing to the next, one more hour one more day and Diane (Charity Baker's mom) it is such a blessing to have your daughter so close to me and all my friends and family as close as my phone or iPod.

8pm So the last bit of news that I have at the moment is the results from the biopsy and an answer to a question. Biopsy showed healing everywhere and little crips all over the place, crips are the buds that the villi grow from that absorb all the food in our intestines. The question was did John not being able to stay off dialysis give us any indication as to whether or not his kidneys will work again and the answer was no.

As of 10pm Gina is going back to the room to get some sleep and begin again in the morning. The only challenge through the night will be to keep John sedated enough to stop responding to every change going on around him. The doctors agree that for now John has gotten too aware of what is going on and is communicating his distress too well, and so they are changing medications to enable him to stay asleep and trying to keep things as quiet as possible around him.

Thursday, December 2, 2010

Repost of today's Facebook updates

I wanted to begin today's repost with a Scripture verse received in a note from a family that we do not personally know, but who have come into our lives during this struggle. We are so thankful for the encouragement, support, and loving-kindness that is God's gift to us through all of the special and wonderful people that He has used for our and their good in this time.

Lamentations 3:21-24 But this I call to mind, and therefore I have hope: The steadfast love of the Lord never ceases;his mercies never come to an end;they are new every morning; great is your faithfulness. “The Lord is my portion,” says my soul, “therefore I will hope in him.”

7am John is still sound asleep. The nurse came to tell me that he had an excellent night. He needed his pain Meds on schedule but was able to go most of the night without the anti-anxiety Meds. Dialysis is coming to unhook him between 7:30 and 8 and then we will be on 24 he pee pee watch. Come on little kidneys!

10am Dialysis machine is gone and so I go to move my chair so that I can reach his curls and sit right by his head. For the moment he is sleeping and they are supposed to be leaving him alone today and not poking around in his incision to give it some healing time. I'm not holding my breath on that one, the nurse is amazing but sometimes the others have issues with their curiosity level.

I wrote soon afterwords; Remind them that curiosity killed the medical student.

11am Lol, oh honey you would be enjoying this today. So rounds have happened and John is now making something that looks like 'legit poop' into his ostomy bag, extubation is not on the table until tomorrow and g-tube feeds are on hold until news from the biopsy hits. It is entertaining to watch the different personalities play off each other and I can tell that all involved are more optimistic as the days go by because they become more lighthearted.

2pm John was moved to a room down the hall a bit so the maintenance people could get in and fix stuff in his old room. He is stable enough to not be right at the nurses desk anymore and the nurse practitioner just came by to let me know that she wants him to have 2 hours of uninterrupted sleep, hooray, I'm so excited, I've been wanting to kick people out of here for days!

3pm And I didn't mean you guys. So as if we needed a reminder that John is still perched high up in dangerous territory on a very thin little tightrope the dialysis machine is being hooked back up very soon. I still don't understand fully but his potassium is way too high and it's a kidney issue and I will ask enough questions to finally understand but for the moment I just want to cry, Lord have mercy.

5pm Right now John's little kidneys are not kicking in at all to remove the potassium and while there is potassium in today's tpn bag it is just too steep a climb in his blood potassium level to wait for his kidneys to get to work... on this. It was 3.6 at 6am, dialysis was stopped at 8am and at noon it was 5.2. I've done a little bit of reading on kidneys this afternoon and will ask more detailed questions when I get the chance but from what I'm understanding the only thing that can be done is put John back on dialysis for a while, days I would guess, and then trial him off of it again. Not only did the kidneys take a big hit with all the blood loss and low blood pressure but evidentally when a body undergoes extreme stress it can dump potassium like crazy. For now we are right back to where we were depending in God's grace and mercy, I feel like the guy who said 'I believe Lord, help Thou my unbelief.'

The rest of the evening has been uneventful but still tiring; Gina wanted me to assure everyone that John is still fighting and still going in the right direction even though there may have been some false starts to this day.

Wednesday, December 1, 2010

Repost of today's Facebook updates

This is Mark working from home to spare Gina from typing with her thumbs until she gets a keyboard to work with. This is the series of updates on John that she put on Facebook for Wednesday December 1st.

7am. The sky is gloomy but inside John's room the glow of friends and pastors and dad lingers over a little boy who is sleeping peacefully with vent settings that are at extubation levels, beautiful numbers on his monitors and a mommy who keeps falling back asleep.

10am. The sun has come out, the methadone has obviously kicked in and John is able to be awake without tons of fear and anxiety but still able to pout and make faces with things he doesn't like and then go back to resting peacefully when left alone again.

11am. Biopsy is at 2:30p. They are continuing to change around Meds and will be turning the vent to a cpap pressure support system in a bit, letting him do the work of breathing through the day and night to make sure that he is strong enough to have the vent removed in the morning. He is also putting out just a smidge more urine and so they are excited to see him try being off dialysis in the next day, more or less.

1pm. Huge bath for John and he is finally resting, new meds seems to be settling in well. He had his first trial on cpap mode and needed to step back just a bit. So at this point the vent is set to give him 8 breaths a minute and he is initiating his own at 22, so he's doing fine but just needed to take this in a little smaller baby steps that thought.

4pm. The scope and biopsy is done, the doc is optimistic that what he is seeing is damaged mucosal layer healing but of course only the biopsy will tell us for sure. He did explain some fascinating things like all nerves to John's intestines wer...e cut and there are no new connections to the new bowel which will mean that he will truly be able to eat without hurting anymore. The other interesting tidbit is that he lymphatic system that attaches to the bowel is also not surgically reattached but that given a couple months will reattach itself, this is what lets a bowel absorb fat, so for a while he will have to get very little fat via stomach. John is again sleeping quite peacefully and even though he was anxious during the scope it seems to have passed and let him be for now.

6pm. John's trial for getting off the vent today didn't work, he is so much stronger than yesterday but still just not quite ready, so we will start again tomorrow and for tonight his job is to rest and heal more. I am not discouraged by this, I... am actually heartened by how much they are talking about John being in charge of these things, which of course means nothing other than God Himself is working in there and this is on God's timetable not ours or theirs, blessed be the Name of the Lord who knows what is best for little boys and when they need things!

10pm. John is ending this day with one while bank of IV pumps removed, he's down to 5 total running at this moment, 1 tpn, 1 antibiotic and 3 that work the dialysis machine, and only 2 others even still in his room. He is barely dozing and has had the longest awake period since surgery and I swear he was mouthing 'home' to me, I told him daddy was home and that he would get to go home again too and he was comforted by that. His vent settings are still at the level that means he will get to try being off if again tomorrow and they are unhooking the dialysis at 8am for 24 hrs to see if he will make it without it. The tightrope still stretches out before him and he has a long road and lots of recovery to do but for this night he seems to have his feet firmly planted on it and facing forwards :)