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

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

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

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.

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.


Mark

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.

...it 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.