Omaha Here We Are

John was transported via ambulance to Omaha today. We have much to be thankful for and many people to thank, I'll go into all that in another post. For right suffice it say that he is doing well, we are all pooped, and it looks like he may need to stay here for a while but should be able to come home without a central line.

God's Mercy is Tangible

We are preparing to transfer John via ambulance to Omaha this morning. Last night we sat up and watched a little boy struggle. John's CO2 dropped to 9 yesterday evening (20-25 are normal values), this is very, very acidotic and acidosis can do very bad things to your body. An emergency EKG was ordered in the middle of the night because John's potassium was so high that he was in heart attack and heart damage range. Labs in the middle of the night showed numbers that fairly screamed renal failure - not a very comforting word. Through the night John made poop that we've only ever seen liver failure patients produce.

The night was long and dark and the storms out our windows only added to the gloom inside. At times like these I find that my mind cannot focus to think or even to pray. All human words fail me and my mind, body and soul clings to those Words of God that have been repeated so often that they are as much a part of me as is my flesh and bones.

The Kyrie quickly comes to mind, those simple cries "Lord have mercy, Christ have mercy, Lord have mercy" echo in my mind as I sit paralyzed, unable to do much more than watch my sleeping boy and listen to him breath. I know full well that God's mercy of healing takes many forms and can just as well come in the healing little body that fights off acidosis and renal failure and that God's perfect mercy is no less perfect and no less merciful when it comes int he ultimate healing of heaven where little boys no longer struggle against broken bodies. At these times the tears are surly for me because I cannot imagine life on this side of heaven without a smiling little silly boy to love and hold and watch grow up and yet I know that is a very real possibility and that should I be forced to cross that bridge that Christ in His Mercy will carry me through each painful step so that I can again share His Mercy and Love with those here who need it despite by sinful nature that would rather curl up in a ball of despair and live only for myself because I would miss my little boy so much.

The Kyrie gives way to the Creed, to the knowledge that God our Father created this little boy and Christ has redeemed him and me too. The Creed fades into the Lord's Prayer and while it takes me a while to quit choking on 'Thy will be done' because that means that John is indeed in God's hands and not in mine, but as I remember that God's will for John is perfect as is His will for Mark and I and slowly I am able to go on to 'daily bread' and remember that God provides for all our needs, including the need for healing - both earthly and eternally.

Finally I am able to 'thank Thee my heavenly Father, through Jesus Christ, Thy dear Son that Thou has kept me this day from all harm and danger' for surely nothing of this world, not even a broken body's tendency for weakness and acidosis, can truly hurt us, for we live in Christ and He in us. I'm able to find sleep with the prayer that the 'evil foe may have no power over me' and rest in the knowledge that no matter how the battles look to be going the war has been won by Christ and His Mercy extends to every little acidotic cell.

Today I woke to a little boy who though tired from the ordeal of the night, had smiles, wanted his hearing aids, had opinions about what we should do and even played with breakfast. His labs, the tangible proof that the clinical evidence portrayed the truth of what was going on took forever to come in. Mark came to be with us as we waited, after all where else would such a wonderful daddy be on a day like today. John felt good enough to kick a little soccer ball up and down the hall with Dr. Moto and to run a play a little.

On this day God's perfect mercy came in tangible numeric proof. John's labs weren't just good, they were amazing. Not only was his acidosis rectified, but his liver and kidney numbers also look great. The relief was tangible, us, the docs, nurses, everyone who knows John had a new twinkle in their smile that despite all our efforts couldn't be achieved earlier.

We are still headed to Omaha because John has more than a weeks worth of anti-fungal and antibiotics to go and they really cause havoc with his gut. We are going because this is John's best chance to go home central line free. We are going because the experts in short gut are there. We don't yet know how long we will be there, for our own sanity Mark and I have to plan for a time period, then if it's shorter we celebrate and if longer we learn to adjust. This time we are setting our mental clocks for 4 to 6 weeks.

Before we leave we will have to say good-bye to some of the most amazing doctors, residents, med-students, nurses and hospital staff that we know. We are convinced beyond doubt that the love and dedication that these people have for John, for us, and for all they serve is yet more tangible proof of God's perfect Mercy.

Amazing Doctors, Big Dogs, Good Drugs and a Wonderful Husband

Thursday they found yeast growing in John's central line culture, thankfully it wasn't in the peripheral culture also but still this meant that his central line had to come out NOW! Amazingly enough John didn't and doesn't appear the least bit septic and the only ill effects are in dealing with trying to push his feeds and cut his IV fluids so that he doesn't have to have a central line put back in.

Of course all this meant that John would need to remain in the hospital until Monday at least and I had a Friday appointment to have my wisdom teeth taken out. Trying to figure out how to be in two places at one time was making us crazy. We never leave John alone in the hospital for any length of time at all. The staff is wonderful and we trust them implicitly but they are also busy and have more children to be responsible for than just ours. We have seen families in various stages of meltdown when their kids are ill and it only takes moments to steal a child's life, health or innocence, call us over-protective, we'll wear that label with pride.

Our dilemma was brought to an end by the kindness of Dr. Wheeler - the resident in charge of John's case. He came the morning of my oral surgery to give me his personal assurance that he would make sure that John wouldn't be alone at all while we were gone. We don't know the names of everyone who stayed with John, we do know that another resident stayed with him at first and then Dr. Wheeler sat with him personally for a while. We hear the nurses and staff talk back and forth about how impressed they are with Dr. Wheeler, no one is more impressed or more thankful than John's mom and dad.

I must admit that I don't remember a lot about Friday morning. Going to the appointment is clear but from the time the IV went in until sometime Friday afternoon is pretty much lost in a haze of hydrocodone. Friday afternoon though we had a visit from Teddy, a Newfoundland who comes to visit the kids in the hospital. John was amazed to see such a huge dog, he petted him a bit and then when Teddy laid down on the floor John liked to sit by him. I think the dog visit did as much good for me as for John. I had forgotten how silky soft their fur is and how big a presence they are in a room.

Tonight Mark was able to go back home to get some rest before worship in the morning. The pain has subsided to the point that 1/2 a hydrocodone every 6 to 8 hours is fine and on that amount I am lucid enough to care for John. It's funny I can see that my face is swelling a bit, but it really just looks like me 20 pounds ago, I'm surely thankful that the rest of me isn't swelling to match my face.

Mark is nearly home now, and as much as he'd like to be here with us he's needed there too. Friday as I drifted in and out of the haze it was so comforting to have him here. I didn't always know exactly what they were up to but I could hear that both Mark and John were enjoying their time together and if John remembers much from this hospitalization it will be good memories of his daddy who loves him so much.

Wait on the Lord

It never ceases to amaze me how well God has provided for us. Often I have sat in worship and thought that the sermon was aimed specifically at me. That may not be so surprising as he who gives the sermons is my beloved husband, but many times the readings and propers of the day seem just as well aimed. The Introit this coming Sunday includes the verse "wait on the Lord", how wonderful that our heavenly Father is that this verse should be included this week as tonight I sit in the hospital with my sweet little boy who one more time is growing bacteria in his central line.

When we brought John in yesterday, for routine labs and such, he had thrown up a couple times and the kind and gracious doctors of University Children's Hospital were able to come check John out while we were here, and had a blood culture drawn just to be on the safe side. This morning we got the phone call that John's blood was growing gram negative rods, which are usually particularly nasty little bacteria and pretty antibiotic resistant.

So we sit and wait on the Lord. Mark is taking Papa to the airport to catch his plane home and then will go back home to pack a few more things for us, save the roast from the oven and then come to spend the evening with us while we wait on the Lord to provide His miracle of healing through the skilled hands of nurses and doctors and the killing power of IV antibiotics.

Our life has been crazy levels of busy ever since Papa first came on May 29th and now with this time to wait and reflect I'm able to share what's been going on. After he got a bit to visit with us I took him to Emporia, Kansas to meet Mark's brother Paul and his son Isaac. We had a nice lunch and a short visit, but it was fun and Isaac is sure growing up to be a nice young man. I returned home just in time for worship Saturday evening and John was waiting there in the pew for me and was even pretty well behaved during the service.

Sunday evening we took John to Omaha because he was having his adenoids taken out on Monday morning. John's surgery went very well. The most traumatic parts, as per usual, was saying good-bye and watching him cry and wave as he was carried off by the anesthesiologist, and then the waking up was no picnic either. The waking up from anesthesia with your face hurting is never fun, one eensy dose of morphine and he was a bit settled and then only needed tylenol for the next couple days and the pain was gone.

After a good long nap post-surgery wake-up, Charity brought the Baker chicks to visit and we had a great time - we always do. John was in fine form and after giving the littler chicks rides on the gait trainer they taught him how to hide in the cabinets. I'm sure no Lied room is ever the same when we leave, if the walls could talk ours would be constantly giggling at the antics of our little boy and the boys and girls that come to see him.

Tuesday's clinic appointment went very well, John had gained weight and height, his labs looked beautiful and Dr. Sudan was prepared to let him go a full 6 weeks before coming back. Instead of that we are going back on the 8th, hoping that that we can have his central line pulled out then. Sitting here waiting on God's perfect timing isn't always easy but He provides the peace that we need to go from day to day and may even provide the stamina and healing that John needs to have this line pulled on the 8th of July.

We spent Wednesday at home getting ready to leave again. With laundry and bulletins caught up we left out Thursday morning for Enid, Oklahoma where Mark's brother Paul and his family live.



Now at night John is tucked in firmly, when the Beav was tucked in I never thought about maybe his parents were doing that to keep his goofy butt in the bed, but whatever there reason, tucking in is now a tradition here. Of course we have to untuck the sleeping boy before we go to bed or when he wakes up he wriggles his way out of the blanket and gets really mad when his head is stuck in the crack between his mattress and the wall, go figure.

We got to Enid Thursday afternoon and enjoyed spending the weekend helping them to celebrate their 25th wedding anniversary and an open house too. Cam and I got to do a bit of cooking together and much to my amazement she even made grits taste good - I didn't know that anyone could make grits edible much less really good, I am suitably impressed. Mark got to spend some time landscaping and new-house-fixing with Paul and the kids, well the kids had a great time too.

Isaac and David's current favorite CD is Micheal Jackson's Thriller and let me tell you John was thrilled to no end. He loved it when the boys would play the music and dance, the last day there John was dancing with both hands in the air as high as he could and shaking his tiny heiny, unfortunately I was laughing too darn hard to even think of the camera until the show was over.



This is John dancing or solo sword fighting with a race track, I never could figure out which it was and kinda suspect that it was a new art form all togehter.





I'm not sure that Paul and Cam had the need for a little boy racing circuit in mind when they designed their new house but they surely build a good track for it. Isaac got in on the chase now and again, but for the most part David and John chased each other through the living room, kitchen, and hallway as fast as they could, which usually meant that David would lap John a time or three during the race but so long as he kept coming around John was wiling to chase some more.



Isaac took time out to play ball, legos and other things with John and by the end of the weekend John was having such a good time that he was reluctant to leave his cousins.



We had one last opportunity to get a picture with Paul, Cam, Isaac and David before we took Papa back home with us. We are looking forward to seeing them again in September when the whole family will be together in North Carolina again.

The ride home was mostly in rain, with a little hail and some pretty amazing lightening shows. We got home quite late Sunday evening but had to prepare for a big day on Monday anyway.

Monday morning early everyone piled in the Jeep and off we went. First we took Mark to Concordia, about 45 minutes west of our house, for a continuing education class on apologetics, then Papa, John and I headed to Columbia, a good hour or so east to get on the with the days list of errands.





Our first stop of the morning was at United Seating. This is the company that fitted John with his Kimba chair, the blue one that is seen in many pictures here. Now they are working on getting a power chair for him. The representative was concerned at first that John might not be cognitively aware enough to learn to operate a power chair. I assured him that no one who actually knows John doubts his cognitive abilities, but in the and I find that it's better to just step back and let John prove himself - he always does and this was no exception.

At United Seating John mostly went backward and in circles, and ran over Papa's toes once for good measure. Later at physical therapy the representative brought the chair for John to play in again. This time with some incentive, the pieces of his favorite puzzle scattered around the room he was getting the hang of joystick steering. After getting his own legs pinned against a table and getting yelled at a bit by me and the therapists he began to realize that running into stuff and people wasn't so darn funny after all. By the end of the hour no one doubted that John was cognitively able to handle this chair.

John will soon start attending a Seating Clinic in which he will get to play in this chair while we wait for Medicaid approval and for the new version to come out this fall or winter. We decided to go ahead and wait for the newer version because it will come with a ton of new features including that it will get closer to the ground making it more accessible for John, but also it will go higher, have more programming options, better hand controls, and come with Blue Tooth technology. That means that this chair, with proper software, will be able to do anything that a cell phone can currently do and more, he will even be able to use the chair's joystick as the mouse for our computer. We're excited to see the freedom that this will bring to John's life and one more time we will wait patiently on the Lord.

Seating clinic will also give John a chance to work with the therapists for his next car seat. He's almost too big for his current car seat and albeit he will soon be legally big enough to transition into a booster seat, he's not ready physically for this move, and we're not ready mentally for it either.

Our huge day in Columbia finished up with grocery shopping and then going to meet Mark for supper in Concordia. As long and as tiring as our day was it was good and I was certainly thankful to have Papa along. Not only was it pleasant to have some adult conversation but he was able to hang out in the Jeep with John and let me run a couple errands that are nearly impossible to manage with John in my arms.

I think for the rest of the week Pap and I talked each other ears off. Mark was around as much as he was able to be, and he and his dad had a nice visit too. We got to talk about everything from childhood memories to politics and everything in between, especially a silly boy who likes to help whenever he can.



We particularly enjoyed getting to have Papa with us for Father's Day. Because of distance and responsibilities Mark and his dad haven't spent too many Father's Days together since Mark became a Pastor, so this was quite a treat. My own dad passed away 18 years ago and while he is ever missed and loved, it was great for me to get to spend this special day with my 2 very favorite dads, John's and Mark's whom he shares with me.

Well Papa is on the plane and will probably be home before Mark gets here this evening. John is doing better and better. He was pretty nauseas earlier but since his new antibiotic was in a little over an hour ago he hasn't made that gagging face and is no longer holding onto the emesis basin. He even managed to go potty in the 'hat' and give a big 5 to TJ the hospital mascot when he came around. Of course this means that John's tigers are now triplets instead of twins.

I wish that I could remember all the funny, cute and amazing things that John has done over the past couple weeks to share, but here's the few that come to mind.
* While watching Curious George painting apartment walls, John got his dad's mostly empty milkshake cup and painted his entire self while we were driving home. He had such a huge grin on while doing it that we couldn't help but laugh - chocolate does wash off - eventually!
* John figured out how to escape from a sing bed and couch into a sitting position so that he could scoot away.
* He can now completely run the portable DVD player in the car with the exception of changing the disks.
* Last time he 'drove' in the car-cart at HyVee he figured out that he's now tall enough to steer and stick both his feet out the drivers window, I'm thinking driver's ed is going to be entertaining 12 years from now.
* He now gets his Curious George first readers and 'reads' them page by page, and will also hand them to one of us and sign 'read please' just beautifully.
* In therapy on Monday they helped him hold a big crayon in a different way and he now can make circles, they're sloppy, they are counterclockwise, but they are unmistakable circles.
* Every morning that he walked past the room where Papa was sleeping he would sing 'Papa' and also tell me that he was in there or even that he was in there sleeping.
* John now consistently tells us he needs to go potty if we're paying attention to him and always really has to go.
* He's figured out how to sign a perfect 'g' and 'q' and many more of his letters.
* He is getting the hang of cutting with scissors on his own, especially is his trunk is well supported.
* Even though he still can't or won't tell me what he's thinking I can tell that his play is getting more imaginative, his tigers, and other stuffed animals 'walk' more, and I've even noticed that where two or more are gathered they seem to 'talk' to each other, trains and cars get driver over and under bridges and other sundry things.
* John now covers his mouth when he coughs, most of the time.
* He has got to have a napkin in his lap just like Papa's.
* He's even starting to eat again, just a bite here and there but no matter he's at least eating.
* He's mastered a bendy straw even though a straight one still eludes him.
* When his hearing aid battery dies, instead of getting angry, ripping his hearing aid out of his ear and throwing it on the floor, he take is out, gives it to me and tells me that it's 'broke'.

While waiting for Mark to come, John and I took a nice long walk, through the medical school, past the way too fun emergency showers, down past the medical school library and out where the college kids play sand volleyball. John was pooped when we got back, but every time someone came by and said 'hi' he stood up nice and straight and gave them a big open-handed wave. Ever my little social butterfly.

All Through the Night...

...as I would wake up just enough to listen to the monitor and make sure that pumps were running properly I was greeted with one of the sweetest sounds known to this mommy's ear - snoring, little quiet, barely audible snores, bringing to mind the image of a sweet faced little boy stretched out on his bed sleeping easily. This is the first night this week that John has slept through the night, I did hear him cough a few times but it seems like the nasty cold bugs are finally being vanquished.

Papa, Mark's dad, is on his way in for a couple days, then I will be taking him to meet up with Mark's brother somewhere in Kansas, and returning home only to head out to Omaha Sunday afternoon. John is going to have a nasal scope done early Monday morning to see if there is something up there that is contributing to his frequent colds and such. We'll get to visit with our friends the Bakers and hopefully take in the sights at the Omaha Zoo and then be back home just in time to go to Oklahoma to visit with Mark's brother and his family and gather Papa and his stuff back up and bring him here to visit for a couple weeks.

We have the privilege of having Papa's company for Father's Day, so to celebrate this Father's Day in style I have visions of beef tenderloin and maybe some Milwaukee Million Dollar Pie or some such thing dancing through my head, along with some good beer, John and I will have a great time celebrating with 2 of our favorite dads. Maybe I'll get some news and pictures posted before Papa goes home later in June, maybe I won't but you can bet that afterwards there will be pictures to show off and stories to tell!

Raging Ear Infection

Well we finally know what is causing John to feel so bad, according to his pediatrician, whom we love, he has a raging ear infection. We had this confirmed on Friday while we were in town for other appointments. This is only John's second ear infection and the first one we never knew about until it was over. We figured it was this because at breakfast he took his ear out, gave it to me, kept sticking his finger in that ear and finally told us that it hurt. I imagine that it must have for him not to want his hearing aid in. Because we can't count on his absorption of medicines through his gut he got one huge Rociferin shot in his leg, he screamed, he cried and just like Dr. Beal said within 15 minutes not only was he over the shot but he was already starting to feel better and within the hour was ready to have his hearing aid put back in. I love it when medications work that quickly!

We had a nice conversation with Dr. Beal, he's been John's pediatrician since John was a little over a year old and we treasure him. He wrote John a prescription for his power chair and will also take care of letting medicaid know that it is really necessary for John to travel to Columbia for physical therapy because, go figure, there isn't a pediatric physical therapist here with access to a gym, which John needs. We talked a while about the disgustingly tangled web of red tape that government anything is and lamented that it looks like our country is traveling the path of universal health care. I still can't believe that thinking people can support this, after all one entanglement with medicaid, medicare or even worse the VA should let you know that you don't want these folks in charge of everything. Okay, off the soapbox and back onto the sweet boy.

We went into town Friday for John's first appointment with his new nephrologist, Dr. Groshong. This is the nephrologist of our dreams! He is kind, knowledgeable, actually has had several prune belly patients, takes the time to explain and answer questions, insists that all a patients doctors talk to each other so that they do not get at cross purposes and realizes that it's important that John get to be a little boy not just a patient. We are thrilled with him! He did tell us that while John seems to be in no immediate or even near future danger of kidney failure that these kids do have a tendency to outgrow their kidneys and we'd have to cross that bridge when we got there. He also told us that new research has shown that the big surgery that other doctors kept wanting John to have for his ureters and bladder are infective and do nothing at all in the long run for them. He is going to be monitoring John's blood pressure closely and we are looking forward to the next appointment with him in 4 months!

We went out to HuHot for my birthday and John was a hit with the wait staff as always. He was so cute trying his hardest to imitate Mark and pick up pad thai noodles with chopsticks. Today he is continuing to feel better, despite an ever snotty nose and icky sounding cough, but he had enough energy to take a walk around the block. His new favorite thing is for Mark to run in front of him and then he tries to run to catch up with him. It amazes me that this is the same little boy who not quite a year ago could barely go this distance with the seat in his gait trainer.

We are so very thankful for the blessings of improvement of health that God has brought into John's life. For the plethora of medical people who care for him and for everyone who loves him and prays for him. Each day we are amazed by him and never has Omi's phrase 'love you wonderful' rung so true as when Mark uses it for John, these are the things that makes being a mommy the most wonderful job in the world.

Monkey Days

Today John woke up smiling, playing and I can hear him chattering in the other room to his daddy. Despite the rain, the overcast skies and the general gloominess of the day, here it feels like the sun is just peeking out from behind the clouds and everything is looking up. John's nose is pretty runny, but that's the last vestige of the past few days. Monday John's labs looked very good, but we could see in his countenance that something was amiss and could just feel ourselves bracing for what might be coming. That look, that tired, not quite so interested look that took over Monday night developed into full blown monkey days on Tuesday and all of Wednesday afternoon. We call them monkey days because John feels so bad that he lays in the floor and watches episode after episode of Curious George and while he will still sign to tell us which episode he wants, and imitate the show a bit, mostly he lays there with his own stuffed monkey and watches. He needed a little fluid bolus on Tuesday afternoon, but there was no fever and since he was coughing a bit we figured it was another cold thingy coming on. Wednesday morning he looked a bit better and was ready to walk and play in the basement while Mark and I got stuff ready for another garage sale this weekend. For an hour or so he was having a great time running through the blankets that were hung on the basement line, touching everything he could touch and making sure that the dog wanted nothing to do with being in the basement. We could see his energy start to drain though, but when we took him upstairs he still had enough umph to play his video game for a while and then to watch the videos on YouTube and then well we were back to a monkey afternoon. We gave him a fluid bolus through his g-tube last night and let him sleep and this morning we have snot everywhere, but behind that snotty nose is bright cheerful eyes, a willing and even mischievous smile and while we may end up with a monkey afternoon, or evening, it sure looks like we are going to have a good morning.