Saturday, November 27, 2010

Date Night in the PICU

The nurse was teasing us earlier that she needed to get us candles because it looked like date night in here with us sitting in the corner together enjoying supper. It feels so very natural to be here, where we are all under one roof and in one room together. Date night, not really, but a good night. John is continuing his walk on this tight rope and seems if anything to have picked up a bit of speed and dexterity. They are currently trying to figure out how much versed to give him to keep him sufficiently knocked out to stop fighting with them. We are so very glad to see this, it does however explain much about why they were so worried earlier when they had to give him 1/5th this much anesthetic and he was still not responsive.

I walk with Jesus all the way
His guidance never fails me
Within His wounds I find a stay
When satan's power assails me
And by His footsteps led
My path I safely tread
No evil leads my soul astray
I walk with Jesus all the way.

This night we are so thankful for all the steps that John has made and yet we continue to pray and to trust that it is Christ Himself who walks this precious child through this time, thankfully no longer in a deep dark valley of death, but still through dangerous territory.

Thursday, November 25, 2010

A Tightrope Walk

My friend Julie came to see me today, we laughed together, we cried together and again I was reminded of how Jesus Christ continues to reach out and touch me through the hands of my friends. She told me that she explained to her son that John was walking a very high tightrope and he asked if there was a safety net and in my mind I thought no, but my dear friend continued and said that yes, baptism was his safety net, of course it is, how could I forget. On this Thanksgiving Day I could write a book of just lists of things that I am thankful for, but very first and foremost on my list is John's Baptism, his safety net, cause even though he is walking pretty steadily on this tightrope right now there is still a long rope ahead of him.

I would be remiss to not remember out loud a few more Thanksgivings, our amazing friends, family and church family, the medical staff and support staff here and those in Columbia. We could not walk along watching John on this tightrope without our dear loved ones who hold us and support us and remind us that it is Jesus who holds John in His dear arms on this walk and it is Jesus who is John's safety net should he fall.

It is our privilege and honor to sit in John's room, hold his hands and take care of him in anyway that we can, and it is a blessing that you have chosen to sit with us while we wait quietly for the salvation of the Lord.

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."
The Lord is good to those who wait for him,
to the soul who seeks him.
It is good that one should wait quietly
for the salvation of the Lord. Lamentations 3:22-26

Wednesday, November 24, 2010

It Is Time To Sing

Praise God, from whom all blessings flow;
Praise Him, all creatures here below;
Praise Him above, ye heav'nly host:
Praise Father, Son, and Holy Ghost. Amen.

John has had a quiet night with much gained in the way of turning down his blood pressure medicines and being able to do a little more with dialysis and needing a little less oxygen. He is right now the most stable since going into surgery on Monday night and has overcome a great hurdle in his recovery. He is not going to be taken to surgery this morning because they feel that they are ahead of his infection and the risks of surgery now are outweighed by the benefits. He still has a very very long recovery ahead of him, there are still many hurdles to go over and many dangers ahead, the outcome is still not certain and we may yet mourn the loss of our son. But for this day we sing the Common Doxolgy with smiles and my tears are tears of joy, we may yet sing these same exact words in a different setting with fewer smiles and tears of sorrow and pain, but God is to be praised for we are equally blessed by His healing, be it temporal or eternal and always always we take comfort and joy in His gifts of eternal life that He has given to John, to us and to you.

Praise the Lord!
Praise God in his sanctuary, praise Him in His mighty heavens!
Praise Him for His mighty deeds; praise Him according to His excellent greatness!
Praise Him with trumpet sound; praise Him with lute and harp!
Praise him with tambourine and dance; praise Him with strings and pipe!
Praise him with sounding cymbals; praise Him with loud clashing cymbals!
Let everything that has breath praise Lord!
Praise the Lord! Psalm 150

Tuesday, November 23, 2010

The Circling Storm

I have always loved the Bible verses about Jesus calming the storm, and as life and it's circumstances change I find that old familiar loved passages take on new nuances and comforts.

Jesus Calms a Storm
And when he got into the boat, his disciples followed him. And behold, there arose a great storm on the sea, so that the boat was being swamped by the waves; but he was asleep. And they went and woke him, saying, “Save us, Lord; we are perishing.” And he said to them, “Why are you afraid, O you of little faith?” Then he rose and rebuked the winds and the sea, and there was a great calm. And the men marveled, saying, “What sort of man is this, that even winds and sea obey him?”
Mt 8:23-27

For the past few days this passage has been going through my head. I feel like I am standing in the middle of Dorothy's tornado, instead of seeing houses and things flying by there are glimpses of blood, drugs, rushing nurses, swelling, a future without John in it, hopes for him getting better, it's so easy to get sucked into the whirlwind of despair and yet in the midst of this storm is Christ. Just as with the disciples He has not gotten off the boat and promised to care for us from the shore, He has not told us it was our fault for being in this boat, He has not chastised us for our fear, but comforted us with His Word right here in the midst of the storm that rages around us. No matter where this boat finally comes to shore, with John in it or with him up ahead of us waiting we take comfort that right here in the midst of our fear and our doubt and our pain is Christ, in His Word, in His Sacraments, in His people who reach out to us and hold us and encourage us. Every time we feel that we will be swept away by the turmoil that surrounds us one more time Christ holds us tight in His hands never letting us slip away.

John's medical news is good and not. I hate to use the word stable as I am afraid that people will get the wrong picture, so let me explain that if stable is a country far far away, John has now traveled closer in that direction than he previously has, he still has many miles to go and many dangerous mountains between here and there, but he is traveling on the road mostly in the direction of stable.

Today we are watching what feels like a miracle, instead of monitors beeping and people running trying to figure out a way to get John's blood pressure back up the monitors are beeping and people are coming, not running thankfully, but coming to take away some blood pressure medicine and go up on the dialysis machine and such trying to keep his blood pressure down.

We also sit with a paradox, the little portion of his bowel that pokes out from his new ostomy is today actually pink and healthy looking, up until now it looked like a little glob of hamburger in there. At the very same time they came and did a scope on his bowel and took some biopsy's and the mucosal layer looks a little unhealthy and they aren't sure if it is a result of his messed up clotting factor numbers or if there is some rejection going on. So again we wait, 24 hours for the results of the biopsy and news of what they can or can't or need or don't need to do.

John's little liver is hanging on, admittedly for dear life, but hanging on. His ALT and AST numbers which indicate the enzyme functions of the liver are in very near normal ranges but that means nothing because instead of meaning things are going well it more likely means that so much of John's liver is dead that there is just this small amount of enzymes that it can produce. John's bilirubin was continuing to climb, last night 25.1 this morning 25.7, but this noon's number was 25.4 so we are hoping and praying that this is the plateau, if it can hold on, there is some hope that it will be able to heal when the other issues are settled. John's clotting factors are holding steady though and that is another indicator that the little liver is holding on and fighting for dear life in there.

John's white count is coming up, one more time he has klebsiella pneumonia, probably from somewhere in his own gut. They have the appropriate antibiotics on but with his body still trying to mount a defense they are worried that a pocket of it is in the abdomen where blood flow doesn't touch. John is not running a fever and he is recovering in other ways so at the moment they are waiting to determine if they need to take him down to surgery for a wash out and to change out all his lines this evening or tomorrow. I had mental images of a wash out that I won't share with you, suffice it to say this does not resemble a car wash but they do open John's incision back up, pour sterile saline solution in there and then get in there with their hands and move things around and basically wash his guts. The lines they are wanting to change out are all his picc, central, art and dialysis lines, basically every piece of plastic stuck in the child's body that could be holding on to this infection.

As the sun is starting to set here in Omaha we cannot help but hope that the night will bring more improvements with the same hearts that fear what biopsies and another trip to surgery and all those things could mean. We hold tight to John's hands and feet and anything else we can reach, we are excited to see him breath above the vent from time to time and so hope that that tiny little liver continues to work in there. This storm still rages around us, the fear and the doubt come and go but always there is Christ and we take refuge in knowing that nothing can separate us from Him.

No, in all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.
Romans 8:37-39

Sunday, November 21, 2010

I Am Determined To Know

Sitting in this smallish room closes the world down to a microcosm of both space and time. John's bed takes up maybe a quarter of the room, John taking up 1/2 of that and seemingly more each day as his tissues hold on to fluids. Behind that is a bank of IV pumps, 13 last I counted, with bags and tubes and syringes full of medicines to support his blood pressure, suppress his immune system, fight off an infection, replace calories and help support his body with steroids. The dialysis machine is not quite as large as the bed and is continuously running blood in and out of John's body. The ventilator is on the other side of his bed with blue hoses running to the tube in his mouth and of course numbers and lines on the screen that indicates how much he is being supported by it. There are drawers full of medical supplies, computers to do charting, at least one nurse and lights that never get turned completely out. On the side of John's bed, when there is not an acute crisis going on, there is room to sit with my feet propped up and hold his hand, read and do the blog. Mark is sitting a few feet away in a rocker and we have a little set of cubby holes that we have some stuff stored in, most used is my Bible and our hymnal.

There are moments in here when it is scary, our eyes are fastened to the monitor watching John's blood pressure bottom out yet again, wondering if this is the time that they will have to call for the crash cart again. There are moments when we wonder if we will ever see his smile again and that gleam of mischief in his eyes. Fear can easily overtake us, and yet in the midst of all of this is the same little boy we know and love, with curls that are getting longer by the day, gorgeous eyelashes that you can see from the hallway, and despite the swelling and tubes and bandages recognizably John. It is in the moments of fear that we are most thankful for our friends who seem determined to speak Jesus to our darkest fears.

For I determined to know nothing among you, except Jesus Christ, and Him crucified. 1 Corinthians 2:2

We need these words of comfort more than ever before, they are our lifeline to the world that is outside this small room. They help lift our eyes from the monitor numbers and hoses and rushing to save John again and remind us that John is safe, he is firmly in the hands of Christ who created him and saved him from his sin. It is comforting to know that John is zonked out on medicines enough that he will have no memory of this and that despite the occasional yellow tear that runs down his cheek he is not scared, it is just a physical reaction of his eyes.

Tonight we got to ask some questions of a nurse who spent the time to talk with us and help us understand some things. She assured us that she has seen children this fragile and this sick recover, it takes a very long time and many days of waiting and lots of baby steps in both directions, but it has been done before. She also told us the plain facts to the questions that I needed to ask - if John is dying will we know it in enough time to get a Pastor in here, and yes, unless he codes again and then probably no, they could support him for a few minutes but then he would be gone. If he gets another big infection or has another huge insult to his body, like organ rejection or such thing they have some room to move on life support but not enough to compensate for something very large. So as long as things are pretty peaceful and the steps backwards are small and not more frequent than the steps forward it is still possible to have our smiling amazing little boy back with us.

We hope to not have to cross the bridge of losing our little boy, but we know that it is possible and so I want to before sight of that bridge looms before us assure you that if John dies it will not be because of a lack of prayer, or faithfulness, or any failing on the part of medical staff, or you or me or others. It is not God's will that we die, or become ill or sick, it is certainly not God's will that beautiful little boys who can bring a smile to anyone who sees him should die, but it happens and John is a very sick little boy who is right now both critical and fragile with little room to move.

Tonight we hold tight to a hymn that our friend here suggested that I read and meditate on. She is ever faithful to speak Jesus to me and so I want to share the first verse of her chosen hymn with you.

LSB 741, Jesus Christ My Sure Defense

Jesus Christ, my sure defense and my savior now is living
knowing this my confidence rests upon the hope here giv'n
though the night of death be fraught still with many an anxious thought.

This night we hold on to hope for living, for John living long many years as the joy and smile in our house, this night we hold on to hope that no matter what happens that Christ is John's sure defense, ours and yours.

Saturday, November 20, 2010

It begins with toe wiggles,

and moves on to tongue movement, and eyelid twitches. They decided to remove the paralytic that had been keeping him still and forcing him to rest since the second surgery. They were wanting to make sure that he was going to respond and it is interesting to note that the ornery boy was not giving any attention to mommy's handholding or daddy's head rubs, but it took the nurse messing with his belly dressing and giving him a bit of moving to keep him from having any skin breakdown. You have to make him mad enough to do something. Who'd figure that?

He has also begun to initiate breaths while on the ventilator, which is another good sign. It is surprising that a little purple line on a video monitor could bring such joy to parents, and the line is getting longer which means that he is putting more effort into his own breathing.

We were waiting for some good news today to make any report, because it has been more than a little tense around here as we are still concerned about John's liver and it's blood clotting indicators as well as his blood pressures. The morning rounds with the doctors did not cheer us as John had not made any steps forward since yesterday and they were afraid that the liver and infection issues were going to overcome him. They did not want us to lose hope nor were they giving up on John but they wanted to be honest with us about their concerns. There are too many conflicting indicators that they do not truly know what is causing what and what is working and what isn't. Today has therefore been spent in reading Scripture and singing hymns to keep the mommy and daddy confident that all was in the hands of the only One who was truly in charge.

Since John has woken up just a little there have been a couple of good steps forward that we can report. They have been able to turn the dialysis up so that we are getting closer to the point where they will do more than clean the blood and begin to bring down some of the fluid that is filling the cells of his body. He has also been able to cooperate with the ventilator more and breath out the CO2 instead of fighting the ventilator and holding his breath. All of this has taken place without his blood pressure crashing or losing his oxygen level.


Friday, November 19, 2010

I Can't Reach In There

It's a very hard lesson for a mommy to learn that I can't fix the owies and I can't stop things from hurting John. This morning early I was going through morning prayer with him and as I stood here doing my best to speak the words without too many tears I found myself choking on trust...

The First Commandment: You shall have no other gods.
What does this mean? We should fear, love and trust in God above all things. took me a bit and a few gulps of air to squeak out the word trust. Tonight as I crossed another huge hurtle for me, leaving the hospital to go to dinner with a kind and generous couple who want to bestow on us a nearly unfathomable gift, I found that I was again choking on that word 'trust'. Walking out of the building felt like being squeezed or choked or ripped away and for a moment I was wondering if I could actually walk out the door, but I did, ok Mark was holding my hand and walking and having to pull just a bit. By the time we were pulling out of the parking garage I had quit crying and was actually talking, and thinking about how even if I had stayed right in John's room I could not reach inside his little body and repair the things that need to repair, I must trust this to God.

John's day has actually been rather uneventful. The surgeon did tell us that the liver biopsy showed 50% necrosis but that it was not unrecoverable. He later returned to check on John and while here answered my question about what happens to the dead cells, he says that they will collapse upon themselves and be eaten by macrophages and that the liver cells that were near these will then divide one time because the liver knows what mass it needs. This will just take time and patience and all we can do is sit and watch and wait, well they can do meds and such and watch labs and stuff, but really we are all just waiting to see what God is going to do in there where we can't reach.

John's little body is actually quite huge as it is bloated with fluids, dialysis will probably help that but it is going to be a slow process during which he is going to lay here resting and healing and we will be here waiting and being amazed by God's blessings and mercy. His room is becoming more peaceful, in part because the critical acute issues are past, at least for right now and hopefully period, but more so I believe because we are not waiting as ones with no hope, or as ones whose only hope are the doctors, nurses and medications, all of which are miracles in themselves, but because I am learning that it is not my trust in God that makes Him trustworthy, but that He is trustworthy and therefore I can trust, and I can be mom and knit a few socks and even leave the room and go get some real sleep because God who is faithful is knitting all the while and when I awake God will still be with me and with John.

For you formed my inward parts; you knitted me together in my mother's womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written every one of them, the days that were formed for me, when as yet there were none of them. How precious to me are your thoughts, O God! How vast is the sum of them! If I would count them, they are more than the sand. I awake and I am still with you. Psalm 139:13-18

Fire Hose of Blessings

Over the duration of John's life we have gone through so many scary circumstances and through many of them we have felt alone, often we were just afraid to even ask for help or let anyone know how much we hurt and what we needed. Right now in the midst of the scariest moments of John's life we are being blessed by God in ways and by means that I would have never imagined and even now can barely comprehend. One Pastor who is now also part of the people who are helping us described our Pastors and friends as the A Team and believe me we feel like we are surrounded by the A Team, not only in that they are amazing and wonderful but they seem to be able to do just about anything. I feel like I asked God for a cup of water and He has deluged me with a fire hose of blessings, everywhere I look I see His grace and love, no part of my day is untouched by these blessings. As we go through this fight for John's life we no longer feel alone and at times I just sit in wonderment at the amazing hands of Christ extended through family, friends, medical staff and even people I have never met or have no connection to. I have prayed 'give us this day our daily bread' and God Himself seems to have moved the bread factory right into this tiny room with John.

Thursday, November 18, 2010

A Fight For Life

Many are following John's progress on Facebook or through email groups or friends or family, John has a huge battle to fight to stay in this life, his lungs and heart are being compressed by the fluid that is building up in his body because of sepsis (bacteria infection in the blood), his body is trying to adapt to new organs and new medicines and all this at the same time. Surrounding him is an amazing team of doctors and nurses, they work with efficiency and care and often we can tell by the speed of their hands or the relief in their faces if the battle is going forward a few steps or taking a few back. John has now been in surgery 3 times and while we think that is the last we are not sure, he is in a fight for his life. More than the medical team surrounds John though, there is what the pastor who visited us today called the A Team, the pastors, friends, family, friends of friends and people from everywhere praying for John, praying for these doctors and nurses and praying and supporting us as we sit by John's side, holding on each minute to the promises given in John's baptism and hoping with all our hearts that we see him once more zooming around the place in his power chair with that silly little mischievous grin on his face and the light of love and glee in his eyes.

John has been in this fight since he was born prematurely at 33 weeks with a gastroschisis (intestines outside of body). I met him in New Orleans Children's Hospital when he was just hours old and Mark met him the next day when he was barely over a day. Already we were being told that John would not survive, for see in surgery to repair the gastroschsis on day one of life the diagnosed him with Prune Belly Syndrome, a birth defect that affects kidneys and ureters and left him with no stomach muscles, and in the repair they had to remove enough of his intestines that he was left with Short Bowel Syndrome, not enough small intestine to absorb enough nutrients to live. Along with his bowel just being short because of his birth defects it also functioned poorly, had weak walls that didn't squeeze properly and dilated easily to let things grow that shouldn't live in there. Because of these problems he was given a g-tube (tube that feeds directly into the stomach from outside the body) and a central line (permanent catheter that is placed under the clavical and runs into the heart) and placed on TPN (IV nutrition). TPN is very much a double edged sword, while it can keep a person alive and growing for a whole lifetime it more often causes liver damage and can only be sustained for a few years before the liver begins to fail. John's liver started out with some undiagnosable fibrotic issues, meaning that it is stiff and not as pliable and elastic as it should be, which makes it less able to handle TPN.

Despite dire predictions of immanent death John's kidneys began to function, they were shut down at birth, and he was moved from the NICU to the floor at 30 days. He had a second surgery to attempt to make the bowel function better when he was nearly 2 months old and was then flown to St. Louis at 11 weeks old and came home at 12 weeks old. John was rather well for the first several months at home, which was a good thing because we had a huge learning curve of how to care for him. We realized early on that while many think that knowledge is power, in the life of a medically fragile child knowledge is freedom and to be set free of other people schedules we had to learn to care for John ourselves. It was scary to change his central line dressing the first time and when he got his first central line infection at about 8 months old I was overwhelmed thinking that I had done it wrong and in effect killed him. He got better and they explained to me that John's gut was so weak that bacteria transmigrated his gut wall and because the central line is a foreign body it gets coated with platelets and such and then the bacteria just love to cling there and grow. This information was a great comfort for about 5 minutes and very little as we watched John fight one central line infection after another, and twice came very close to losing him to sepsis because he had just gotten so very sick.

Because the central line infections were so damaging to his body his liver enlarged to the point that the tip of it was in his pelvis, his skin was shiny yellow and his eyes had passed yellow and were beginning to turn green. At this point his docs decided that it was too dangerous to keep him on tpn and removed both it and the offending line. John lost weight every month when we took him to clinic, he was always small but was becoming bony and finally a few months in stopped losing but then couldn't gain at all. Eventually he became so weak from this that no amount of g-tube feeds (formula pumped straight into his stomach) or food or drink was making any difference what so ever and when he came to Omaha at nearly 4 years old he barely weighed 19 pounds, was so weak that he had difficulty holding up his head and was immediately diagnosed with 'failure to thrive' a word that strikes terror into the heart of a mommy and daddy.

Here the first thing they did was put in another central line, by this time we had lost count of how many he had had, but we were definitely scared of this one. With the addition of TPN he was gaining weight and getting stronger and soon was ready for a bowel lengthening procedure called STEP. Not too terribly long after that he got to go home and soon was off TPN again and without a central line again. Of course there had been a few infections along the way. This time he did not lose weight, but he also did not gain it and so effectively sat still for months on end and finally had to have another line placed and go back on TPN. A second STEP procedure still would not alleviate the issues with tube feedings and again eventually John was fully dependent on TPN. Infections came, not as often but still bacteria and fungus that was increasingly scary and everyone was holding their breath for the one infection for which no antibiotic would work.

Finally in January of this year John was evaluated for transplant. Mark and I were both terrified of this, but at some point the only option is try transplant or say good-bye and there is just no way that we could not try. It was determined that before a transplant was even attempted John should have his ureter reflux fixed. John's right ureter (takes urine from the kidney to the bladder) was so dilated and ineffective that he had grade 5 reflux, basically urine traveled both ways with ease. He also had a huge pocket on the top of his bladder which would let bacteria get in there and grow. John had both of these repaired in February of this year and remained central line infection free until here just recently, it was amazing. He was still TPN dependent but at least he wasn't fighting infections all the time and so we thought all was well.

Sadly John's liver had just had enough and he developed portal hypertension, basically a liver that is just not letting blood through right so it backs up everywhere and causes bleeding easily. At the same time John's bowel could not handle a medicine change and so started to bleed and it became evident that transplant was finally the only option on the table. John was listed for a liver, small bowel, pancreas transplant on Wednesday, November 3rd. Our prayer was that God's will be done, knowing that this transplant had to come from a donor who had died and was a similar size we could not fathom praying anything other than Thy Will Be Done and that the family of the donor child was having a wonderful day full of beautiful memories.

John was transplanted on Monday, November 15th and has now been in surgery twice since. He is currently on a ventilator with a chest tube in and probably starting on dialysis tomorrow. He is literally in a fight for his life, his eternal life is secure, each time we are able to fall asleep it is with the comfort of his baptism and eternal salvation that we wrap ourselves in and a prayer that he will fight for one more day. You are welcome to watch John's fight through the many miracles of modern technology, Mark C. Hass or Ageena Deneen Hass on Facebook, this blog, email or or of course we have text and phones and that old fashioned thing called snail mail. Please though dear friends don't let yourselves become paralyzed by the day to day trauma of this, John's fight is going to have steps forward and steps backwards, we will spend moments in abject terror and tears that we are losing him and other with sighs of relief and thanks be to God on our lips, but always through both scary moments and good moments we will be holding tight to the promises of Christ that John is safe in His arms and that we and you are too.

God bless you and thank you for praying for our little boy, for in the end despite all these medical issues and the current fight for life we are talking about a little boy. An amazing little boy with a smile that can melt the coldest heart and a level of curiosity and mischief that can turn even the most innocent of things into an adventure. We are privileged and honored to be his parents and to sit by his bed this night and hopefully chase his chair down the hall in days to come, we are honored that you would sit here with us.

one more night

Gina and Mark had another scare last night. The lab number were not looking for the new liver. The prospect that the newly transplanted liver would not be able to work is the dark road. Every hope was looking towards the numbers that would come from his lab that would be taken at midnight. There were many people waiting for this following text from Gina:

"Lab results are in, he is still in very serious condition but there is reason to hope that this is not primary graft failure or game over time :) Now of course the fatigue has totally set in and we are actually both going to go lay down for a bit, the nurse is amazing and so are you."

The term that Gina used, primary graft failure, mean that the liver would not work for John and the would have to get a new one. FAST

signed The Lutheranhen, aka the friend in NE.

Wednesday, November 17, 2010

Another surgery

John's next surgery to clean and remove the packing is set for Noon tomorrow, but we are on hospital time which means it will happen tomorrow at some point probably mid day

I was in the hospital today with Gina, Mark and John. Again their were feed real food and we laughed and cried together. John is still a fragile shell of the boy that I have seen in the past. His life is in a balance that none of our minds can even begin to understand.

We pray that God would let this little boy live another hour, hour, hour, hour, and build up to 24. Then we pray for another day.

Please pray for this little boy tonight. Pray for his parents. When dark our hour and heavy our hearts Christ strength is ours. Lord Have Mercy

Tuesday, November 16, 2010


from the Nebraska friend while Gina and Mark are waiting for John to get out of surgery.

Yesterday morning they received a call saying that there were organs ready for John again. The surgery began at about 9:30pm last night. This morning things are still touch and go with little John. The new liver was not working and a second surgery is needed. His little body went into shock early this morning and he had lost 2 units of blood. Keep this little boy in your prayers. Pray that God's gracious will be done. May our Heavenly Father give the nurses and doctors wisdom while working on John. May He grant Gina and Mark peace and understanding.

Thursday, November 11, 2010

In the hospital out than in again

Gina has asked me to post information on her blog. They had traveled to Omaha Wednesday night. John was going to have his transplant surgery in the morning. On Thursday morning after John was prepped for the surgery, they found out that the organs that John was going to receive were damaged and could not be used. I came up to the hospital and sat and visited with them. They were then planing on staying with me and my family tonight (thursday). God had other things in mind. While Gina and I were enjoying a cup coffee and laughing, she received a phone call from Omaha. John's blood cultures turned out to be gram positive which means that he has a bacteria infection in his blood. They had the choice of being admitted into the hospital in Omaha or driving back Columbia Children's Hospital. As I type this they are driving back to MO and John will be hospitalized in Columbia for at least four days. Now this is just a guess from me and I am not a nurse nor do I pretend to be. I am just a friend that tries to be a friend to Gina, Mark and John.

signed Lutheranhen (the Nebraska friend)

Now And Not Yet

John was prepped, tested and ready for surgery, even knocked out but after inspection the doctors determined that the organs were too damaged for transplant. So John was woke up and we are on our way home with the advice by do s to keep our bags packed and be ready again soon. Thank you for your continued prayers and I will update more as soon as I can.

Saturday, November 6, 2010

Home Again...Home Again

John is home!!!! We are in extremely slow motion here, catching up on rest and such, but ever so glad to just be home :)

While in the hospital John got a chance to meet the new physical therapist and work with her some, he is learning to walk with crutches...


...and will get his very own pair of blue crutches when he returns for his outpatient appointment. He also got to work with the occupational therapist who we knew a couple years ago, and I had completely forgotten how much he had changed in that time until she and I got to talking about it. We look forward to working with (John calls it playing) with these nice ladies and helping John get further down the road of independence :)

Part of that is some new seating and such for his power chair, he grew out of his current seat and is in need of both a new seat and new foot plate so that he can learn to get in and out by himself, a thing that was not even a possibility when he first got the chair.

Aside from just the medical care that he needed one big important thing happened for John at the hospital, a remembering of how much he likes the nurses and doctors and how much they love him. By the time it was time to go he was calling his nurse, friend nurse, and was happy to go and visit with the doctors, one of whom gave him her watch and before we came home showed him that she had another that matched it so now they match. It's been a long time since we were in the hospital, and now with John active on the transplant list it could be a long or short time but another time is inevitable and that one will be a very extended stay. I am sad that it will not be with these nurses and doctors, but they have paved the way for John to be better able to adjust and adapt to new ones and to remember the ones in Omaha that he loves there too. There is no way to say enough good things about the staff at University Women and Children's in Columbia, everyone from our favorite cleaning lady, to the others who clean up, the people who serve food, the nurses, the doctors, the therapists, the Child life ladies and the people who work the desk and let us escape out the doors make it a patient centered, even a family centered place, where the child is seen as a whole beautiful little person and the staff become like part of the family. We're glad to be home, but we look forward to coming back to visit our friends, just to visit though :)