Sunday, September 30, 2007

Day 33: It's an 'R' Mom!

I'm sure if John could tell me in so many words I would have been told this last week or so when I was watching him work so hard to learn to cross his fingers. It never dawned on me that he wasn't crossing his fingers, after all that would be such a normal little kid thing to learn, until Julie came to visit and said something to him about making such a good 'r'. Well yesterday I thought about it again and asked him if he would make an 'r' for me and sure enough he looked right at me, crossed his fingers and held them up for me to see. Duh, no wonder the kid kept looking at me like I was an idiot when I asked him to cross his fingers please, poor kid, I'm sure he thinks I'm the one with a communication issue.

So here he is Mr.-I'm-Making-An-R-Himself

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He does a lot of posturing to get it when he's sitting down, but standing up he doesn't. So we went through the alphabet this morning and he can make an a, b, c, d, e, f, a decent try at a g, not so hot on the h, still can't do an i, j, k, l, but isn't too bad at m, n, and o, has the right hand position but the fingers still aren't right for a p and q, is a great r maker, he makes an s that is perfect, he's been doing a t for a long time, and has trouble with u, v, w although I was watching him work on this one in the hallway earlier, and still has problems with x, y and z. All in all I thought it was pretty darn cool!

Lot's of things are changing and they are changing lightening fast. Two days ago I could walk around the corner on the 1st floor of the hospital and watch him in the mirror and even though he wanted to go the other way he would stop, think a minute and then turn around to come and get me or go my way. Not now! Yesterday I stood in my usual place watching him and he stood in his usual place around the corner and thought, then he backed up nice and straight until he could see me, smiled the biggest I'm-doing-it-my-way-see-ya smile I've ever seen on the kid, and took off down the hall. He has gotten fast enough it was probably a good 30 feet before I could catch him. He now stops here and there along the hospital route to tell me about the pictures and statues, insists that his cup is filled at every water fountain whether he is thirsty or not, wants to push, ram or in some other way man-handle anything that he can get his gait trainer up against. He has no fear of going down new halls and will actually slip onto any open elevator and run through any open door if he thinks I'm the least bit distracted. Needless to say I don't let him wander as far ahead of me any more and I don't chat on the phone while he is loose anymore.

John has always been a smart kid, whether he looks it or not to strangers those who have worked with him are always amazed at just how much horse power is in his head. Let me tell you the horses are on high-octane feed and running for the back fence. He is figuring out stuff at rates that I've never seen him do before and is getting more social all the time. He is waving more, smiling more, and just in general more interested in the people around him. He is now fascinated with the kids and has walked into more than one wall, post, etc., because he was turned around looking at what the kids were doing. At the same time he is eating more, it's still cereal and half the time he has to either have Tiger taste it or feed it to him, but still he's eating more. The whole thing with Tiger is all new and fascinating and changing too, this morning it was cool that we left Tiger when we were headed to church but when we came back and got ready to leave for the cafeteria he was almost out the door and then told me Tiger and ran back to get him before we left.

I am so thankful that Mark is coming on Tuesday evening so that he can enjoy this wonderful little boy who is becoming so much more little boy every minute. Surgery is coming on Friday and while I don't expect that John will go backwards, he never has, not even when he was septic, near death and intubated for a month, but I don't think that he'll progress much and most of his energy is surely going to be spent on healing for a while. For the moment his energy is being spent on growing and running and learning and playing and being silly oh, and impressing his mommy at every turn.

So I can't resist one more picture, it's the same outfit as this morning, his very first time in a couple years to have a real button down shirt and he was so impressed. Omi, Mark's mom, told him that every man and boy needed a good white shirt and tie, well we don't have the tie and since his dad doesn't wear one I'm not sure how John would like it, and the shirt's not straight white but it sure was making me think of Omi this morning when John was sitting there all spiffy and smiling.

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Saturday, September 29, 2007

Day 32 Still...but this is too perfect to be missed!

A dad sings about life with kids!

Day 32: Smiles, Snorts and a Double Chin

Friday came and went, mostly we ran and ran and ran. We did have more pump problems but met the nurse, Julie, in the hall and she evidently has the magic touch because the pump has been working for nearly 24 hours without a single inappropriate beep out of it. Thanks, Julie!

Last night John was awake until nearly 1am because he couldn't stop giggling, smiling and being silly. Every time he'd get himself all most to sleep I'd hear him kicking his feet and then he'd giggle some more. This morning after he woke up with smiles, he decided that he wanted to snuggle with mom for a bit and so laid next to me and snorted and smiled, and snorted and smiled, making sure that I was watching him and smiling too. I was, how could you not, what a silly kid. I noticed while we were laying there that John now has a nice little double chin!

The rest of our Saturday will probably be spent running and running and running, today already we found a new hill to run down, reminds me of the hill in front of Papa's only shorter in distance and steeper too, I really think John is going to have to wait for Mark to be at the end of this one to catch as he comes down so fast it's all I can do to get him stopped before he hits the curb on the other side of the driveway. The couple times that we did it though it was fun and reminded me of my sister's boys riding their big-wheels down the hill behind the house.

For the moment we are in the room to make the bulletins for church on Sunday and answer a few emails but then we will be off to the races again :)

Thursday, September 27, 2007

Day 30: Hanging out for deliveries

Today has been a day of wait, wait, wait! John's central line was sluggish this morning so Julie, the nurse from Option Care came and did an enzyme treatment on it and got it working again. It was fun to visit with her and John enjoyed sharing his "Five Little Monkey's", Julie does a great "no more monkeys jumping on the bed", John was impressed. Later his pump starting acting up again and so we had to wait for another one and then that one started doing the same thing too and it too had to be replaced. So for now we are on the third pump of the day and it seems to be doing fine. John has had a great day, the waiting just meant that we had more time for reading books and having fun.

Wednesday, September 26, 2007

Day 29: I knew there was something in there

John has walked and walked and walked and even ran a good bunch of this day. Tiger has gone down for two meals and was put to bed for supper, and then promptly gotten back up as soon as we got back and hugged and kissed and talked to. John actually ate today, at least better than he has eaten in a while! His favorite thing lately when we are coming back to the room past the front of the postage machine is to stick his hand in the coin return slot, tonight he just kept at it with a determination that I'd not seen before, and then he got this huge grin on his face and came running to show me the quarter that he had found. I wonder how long it's going to take him to figure out that all vending machines have these magic places on them :)

Tuesday, September 25, 2007

Day 28: Surgery Date, New Friends, Hard Work

Well today John has an official surgery date: October 5th. It's still called a tentative date but that is only because it requires that John reach that date without getting sick. So the plan is that John will go NPO, nothing by mouth, at midnight on the 4th, be admitted for surgery on the morning of the 5th, having surgery, go to the PICU, pediatric ICU for 24 hours for observation, mostly because he is just so darn little, then be in the hospital for a week on just TPN and lipids to give his bowel some healing time, have an uppper GI with small bowel follow through test to see how much small intestine is there and make sure that there are no leaks, then they will begin to feed him, at first just formula through his G-tube and work him up to full feeds. He will probably need to remain in the hospital for a couple weeks working on this before he is ready to go outpatient again and then we will be back in the Lied center hanging out until he can come completely off TPN and lipids and have his central line removed. Anything, even just a minor cold will delay, change, etc., but we know it's all in God's hands and so just say our prayers and keep going through our days.

Also at clinic today we found out that John has gained 200grams, that's about 7 ounces, doesn't sound like much but believe me I can see every ounce of it. He's actually starting to look somewhat chubby to me, but that's because when he came he here wasn't much more than just skin, bones, smile and attitude.

The last couple days have been a whirlwind of sorts and we are looking forward to tomorrow with no appointments and time to just hmmmmmmm, well probably time just to run the hospital hallways because that is what John likes to do the best lately, although we are going to get some book reading, block building and such done. It will be a great time to get another project out of the box that Julie and her kids sent to us, John loved the ants and I know that he will love the next one too.

Monday was full of appointments and new friends. We started out the morning in PT where John is walking even better in the parallel bars, forwards and sideways and then in OT he was sorting colors and stacking blocks more readily and even managed to get a decent arm workout when he was put on a peanut ball to work a puzzle. I don't know who invented a peanut ball but I think we will be looking for one of these, it's the best arm workout I've seen the kid get yet. Ummm, think of big exercise ball, kinda squeezed in the middle to make it look like a peanut.

On the way out from PT/OT I noticed that the lower pane of glass was broken in the door, ugh, the same door that John rammed on the way in. So since then we have been practicing being nicer to doors and such, he should have had his little monster shirt on that day!

We finished those appointments in just enough time to get to John's hemotology appointment. That doctor thinks that John probably has more of a platelet issue than a clotting factor issue. He sent us for lots of labs and will be monitoring the results and will be on-hand for John's surgery to make sure that he is both prepared for it, and if a bleeding issue arises during surgery that he is there to help.

In the treatment center John had a great time making the bed go up and down and smiling at all the nurses and patients that went by. This is a treatment center that is used by lots of cancer patients, where they come to get their chemo-therapy and John loves to smile, wave and flirt with all the patients coming and going and brings smiles to everyone. Mark and I have dubbed him the Spreader-of-Joy, and he lives up to it every day.

Monday evening was quite a treat for us, and a chance to meet new friends. Charity and her four children came to pick us up and take us to her house for dinner and some time just to visit and be in a real house. We couldn't have asked for a better present, it was so nice to get out of Omaha, to be in a house with rooms and chairs and books and toys and life, and to meet Charity and her delightful family. The kids showed John their stuffed animals, talked to him, even looked up the sign for Buffalo and taught it to him, and then after supper they stacked blocks for him to knock down, he was in heaven. It was so nice to talk, laugh and visit with Charity and her husband and kids, and we are looking forward to getting to visit with them again.

Today our only appointment was clinic this morning and then to go and get a lab pulled again, so another trip through the treatment center, John has a teeny tiny bit of redness around his central line and they are very proactive about making sure that it is not infected. After that he was ready to run, and run he did, I think we've been through the hospital half a dozen times and then he finally decided it was time for a nap.

On the way back to the room we met another family with a beautiful little 2yo girl that is here for a check-up and then will be coming back in a couple weeks for feeding therapy. Her mom and grandma were telling me about her, she started with only 11cm of small bowel, that's less that half of what John had left, and her doctors told her mom that they would just give her morphine so that she could die peacefully. Finally a young doc told mom that he had seen the STEP procedure in medical school and it couldn't hurt to try it. He did it and 6 weeks later the little girl was brought here. They lived here for 19months and had 2 more STEP procedures done by the same surgeon that is going to be doing John's and the little girl is now growing, developing and doing beautifully on g-tube feeds with no TPN. It's amazing to meet these kids, it's wonderful to see them succeed, and it's great to see their families that love and care for them and continue to hope and go and do.

When he woke up from his nap and was ready to go down to supper Tiger had to go with us again. It was so cute, Tiger was obviously the poison-taster tonight as he had to taste every bite of John's cereal and then the poor thing John fed him salt for a good while. I was thankful that John wasn't feeding himself salt, but poor Tiger. Finally John took tigers little hands and told me that he was all-done and away we went.

We tried to go to the social gathering here in the Lied center tonight but nothing doing, that is located way too close to the doors that John knows he can open and run outside and so we waved as went went past. Tiger was along for the ride again, and John had a great time running through the hospital until it was time to come back to his room, then he was slow, drug his feet, and made that 'i'm-really-going-to-cry-in-a-minute' face, please child, I told him he could either walk or be pulled back and after being pulled a good 10 feet he decided that all-in-all he would rather walk.

Silly boy is in bed, he had to have some ice, after working on his PT homework for a while, John is getting close to being able to sit himself up from a laying down position, and then was ready for a few books and off to bed. We'll see what tomorrow brings.

Thanks again for all you're prayers, friendship and support, we are excited about John's surgery coming up and worried at the same time but mostly thankful to know that so many people care about and love this little guy!

Sunday, September 23, 2007

Day 26: Rich Enough to Be Generous

God will make you rich enough so that you can always be generous. Your generosity will produce thanksgiving to God because of us. 2 Corinthians 9:11, God's WORD Translation

This was one of the focus verses in church this morning. John and I were thrilled to see Lillian and Calvin this morning and to ride to church with them. The congregation here is open and friendly, even though it was only our second visit there were hugs and handshakes on the way in and out. I can think of no words that adequately describe the choir, it's merely a handful of people, but they sing beautifully and fill the space with song that sounds part heaven and just a touch of Motown and all GOOD! Although the worship service was from page 5 of the hymnal, TLH, confession and real absolution was included, a welcome addition, especially in these days.

Pastor's sermon was based on the shrewd manager, a story that has always been a bit murky to me, but he explained it differently than I've ever heard it before and in a way that finally cleared the murk. Pastor Wilkens explained this morning that the land system at the time was one where a rich person owned the land and left the running of it to a manager. The owner told the manager how much he expected to earn from the land and the manager's job was to make sure that the owner was satisfied. The way the manager was paid was by charging the tenet farmers more than the owner's requirements and so when the manager was cooking the books prior to his dismissal he was removing his own wages. Exchanging short term profits for the ability to mooch off these people's generosity for the long term. Still not the nicest guy around, but planning for the future. Pastor explained that Christ was commending the man not because he mis-managed the owners land and got himself fired, nor because he was preparing to mooch long-term, but because he was planning for his future with what he had at the time. He went on to talk about money being a tool that God has given us to serve Him, by helping our fellow man and that if we can't manage money then we will mis-manage the Gospel as well. Finally he finished with the verse that I opened this with.

The verse itself is speaking of money, and we are very thankful at this point in time to be the beneficiaries of those who are rich enough to be generous, not just with money, but with time, prayers, friendship and support. We are also thankful to be rich enough to be generous ourselves, not just with the few dollars that we have, but with the joy and faith that we have in a God who planned for our little boy from the beginning of eternity and who even today has given him all that he needs. There are many things that we are able to share at this time, the one that pops to mind immediately is the way that John is touching hearts here, more than one person has received joy in the midst of their own suffering from our beautiful little boy and his generous smiles, waves and high-fives. We are thankful beyond measure to get to be his parents.

Now for the antics of the day, oh you had to know that he was up to silliness today too! Well not all of it was silly, some was just impressive, first off he behaved well in church. The candy lady gave him a piece of peppermint candy and once it was finally unwrapped he stuck the whole thing in his mouth, I told him to be careful and watched and waited for when he'd need my help cause he was choking. What a cutie, he sucked on and played with that peppermint for half the service and finally spit the itty bitty remains of it into a kleenex because he was done. During all of this he was paying enough attention to fold his hands for the Apostle's Creed and the Lord's Prayer, it always amazes me to realize that even though he's sitting in the pew playing with the bulletin or hymnal that he is listening too. After a good long nap he was ready to run and run he did. I wish all those people who walk by him why he's dawdling and think that they are encouraging him to actually move could have seen him today. He was going fast enough that I had to really walk to keep up with him, of course that was when he was headed to the parking structure that dad parks in, and when he was heading to the escalators. He was nice and waved to the other little back-pack-boy that we met. That's one of the nice things around here, often the kids that we see have the same little back packs and tubes and I can see that John is checking them out. He walked all over the place and when I finally had him heading back to the room I got busy on a phone call and was just walking with him and before I realized it he had taken a detour through the hospital and was back at the beginning again, little stinker. Finally he slowly creeped back to the room, he was excited to stop by the little convienance store but other than that well, he'd really rather go the other way. He's sleeping now, storing up energy, I wonder if that means that he'll actually do stuff for the OT and PT tomorrow or just wait and burn it all later?

Saturday, September 22, 2007

Day 25: Rochester, Beaver, Changes

We've spent the afternoon reading books and then walking, walking, walking the hallways of the hospital.

John is changing every day. Each day he finds new things to look at while we walk, and leaves old fun things behind. For a week he's been running behind the columns and up the Leid center ramp, today neither was fun and he was off to find his way outside to the big circle by the entrance on the other side of the hospital. I notice that he's getting stronger each day, has more endurance, and is more ready to run, run, run. He's changing with his books too, the thing that I've noticed the most is the change with which book is his absolute favorite, it used to be Where's Spot? by Eric Hill and now it is Bear Wants More by Karma Wilson. He's also different about each book. We still read Where's Spot? everyday, but now instead of eagerly opening the flaps and telling me whats in there, he'd rather knock on each of the flaps that look like they have latches of some kind, and tell me what is in there before they are opened, then he doesn't necessarily have to open them, sometimes we do, sometimes we don't. The other thing that is different is that he's signing 'hippo' and 'alligator' and doing them in such a way that the difference is obvious, even though neither is really done exactly correctly, and both of them are very similar signs. The thing that's changed, and amazes me about John and his new favorite book, Bear Wants More, is that he is looking at the details of the pictures. We read this book 2 to 5 times a day, and he's finding new things in the pictures all the times. We, Amy, his speech therapist at home, and I have practically begged the child to please look at the pictures and tell us things about them and now he will hold the page down and not let me turn it until he has shown me all the things that he's going to show me on the page, and it's not always the same things so there's no predicting it and I just have to wait.

You're thinking what the heck does Rochester and Beaver have to do with any of this. Well, it's partly my tv riddled childhood and partly John being silly today. All day he has been running around with one hand under his chin, if you've never seen Jack Benny do this on his show, maybe you've seen Radar do an imitation of him on MASH. Honestly I remember Radar more, and that is the voice that keeps running through my head every time that I see John doing this and it's been a lot today. The Beaver, well today is the day that John has been sticking his hand up the change return of every machine he could get too, I just kept thinking of the Beaver getting his head stuck in the fence and the firemen having to come and rescue him. Now John would be upset that his hand was caught, but the firemen would be so cool, he'd do it again!

My little boy seems to be getting to be more of a daredevil every day and frankly is starting to scare a few adults. But really the kid is essentially in a roll cage, no automatic door could close hard enough to even touch him, much less hurt him. John has spent every moment that he was allowed to do it today irritating the automatic doors at the front of the hospital. He wants to be the one to make them open, he has to run through them, and it's oh so much more fun if they close on him, especially the ones that swing, if they close on him and shove him out of the doorway he is literally squealing with delight. At some point I need to get a warning beacon and signal horn on his gait trainer to warn those people who are coming up ramps, around corners and not watching where they are walking when they are getting on elevators. Maybe I should also get him a bumper sticker that says "I'm nearly 4, I'm all boy, Be AFRAID!"

Day 25: New Friends

Friday we had a visit from a new friend, Julie and her mom and children came to visit and we had a great time. It was fun to talk and laugh and joke and visit and although John took a while to warm up to the kids even he was having a good time. It's great to meet new friends in person and put a face to the names that I've seen on the Loopers list and email for a while.

Loopers is an email community of homeschooling LCMSer's. This group is the best example I've seen of the cartoon that shows a little woman hugging her computer and exclaiming that she loves it because her friends are in there, far from being imaginary or cyber-friends these are real people, with lots in common and even those of us who mainly lurk there and don't 'talk' as much know that when we meet a fellow Looper we're meeting a friend! Thanks for coming to see us Julie, and thanks Loopers, you're a great bunch.

The other new friend around here is TJ, we call him Tiger, he's a little stuffed Tiger that John was given the last time that he was in the hospital in Columbia. John has been given hundreds of stuffed animals and while he will look at them, maybe even give them a hug and wave them around by a limb, none of them have been befriended like Tiger. Today is the second day that Tiger made the trip to the cafeteria, and today he was even fed, given drinks and prayed with us, oh and Tiger had to lick salt too, poor thing. I was so impressed to see this, it's just not something that John has ever done before. Of course, it's not a security-blanket-sure-hope-the-kid-gives-it-up-before-college kind of an attachment, at least not yet, while on our walk around the block Tiger got tossed to the pavement a couple times and finally I let him ride in the back so as not to get tossed again.

Oh, and one more time John woke up from his nap, got himself out of bed and then woke me up, yes, we're still trying to catch up on sleep around here. When I woke up he was just standing there, holding onto his bed, jabbering. For now John is sitting in the living room-ish here and playing/whining by himself. He has got to learn this play alone thing, silly kid, he actually has a good time and enjoys himself once he pulls out his hearing aids and whines for a while, now I can hear him in there unpacking his toys from the box and playing.

Virtual Tour of the Lied Transplant Center If you click on the "view a model of a patient room" you can see a 360 of the bedroom-ish area of the room we are in, it's the one titled "Model Patient Room - Lied" also with the room there is a little sitting living-room-ish room with a love seat, recliner, table, lamps, and a little 'kitchen' type area with sink, microwave, refrigerator and cabinet space. The room also has it's own handicap accessible bathroom, which for us means that while there is no tub for John to play in there certainly is enough room for him to run around the bathroom in his gait trainer and steal your towels :) The other pictures in the tour are places that we go often, the cafeteria, atrium and such.

We have debated back and forth in our heads about whether we will stay here or go to Ronald McDonald after John's surgery. We've finally decided that once he goes out-patient we'll come back here. One of the big things is the availability of private space, living under the stress of not being home, kid being sick, etc. it's nice to have a space to go and shut the door and just be alone, or as alone as you can get with a silly pants kid. RMH does provide a private room, but bathroom and such is shared and while that does afford a great chance at meeting other families with similar issues, it also means that when those other families are having severe family issues you are right in the middle with no place to run and hide. The big drawback to here is the lack of a real kitchen to cook in but all in all that just doesn't outweigh the benefit of being right here, instead of 4 or 5 blocks away, with John having appointments here nearly every day of the week, and cooler weather on it's way. Ah, and that was the other nice thing about meeting Julie, it's just great to know that we aren't the only family that chooses to live on planet-one-car, so at least in some circles even we get to be normal, for a minute!

Thursday, September 20, 2007

Day 23: Welcome byes and Yet another new trick!

The welcome good-byes are for the Zosyn doses, this is the last day, well technically the last dose is due at 4am and then we will get to sleep through the night, a novel idea, we look forward to trying it. Lol, so does Mark, because of course I call him at 4am, in part to have a back-up in case I miss my alarm, but mostly because it's nice to hear his voice in the dark. Of course last night when we talked he was still wide awake, as he started reading The Wednesday Letters when he went to bed and finished them in time for us to talk at 4am. Mr. Wright has another fan, and Mark is normally a sci-fi, thriller reader or Biblical, technical stuff for work reader and yet he too found that he couldn't lay the book down.

The new trick was learned in PT today. John was a stinker for the most part for the OT, but did do some good arm work for her finally, but for PT, now that was a different story. Today was his first day to get to walk between the parallel bars. The first time he was hesitant, the second time going straight he took off and was doing great. He still needs some work on turning at the end and on walking down the length of the bars sideways, but it was great to see how well he did with this. Mr. Paul, our much loved pool physical therapist at home, has been anxious to see John try these bars for a while, it's nice to be in a place where they have some. The PT here also had John doing some walking in his gait trainer without the side supports or seat in it and he did okay, definitely not something that he needs to be trying without someone there to catch him, but oh so much better than the last time Mark and I tried this and he just stood there and screamed until we put his gait trainer back together right.

John is down for his nap, actually putting himself to sleep for the moment instead of escaping. I look forward to this weekend when we will be getting enough sleep that I feel like doing stuff while he is napping instead of falling asleep with a book.

Wednesday, September 19, 2007

Day 22 Still! But here's that trick...

...the new one.

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This is the kid who doesn't like to be on his belly! Prior to this he was laying on his back, in the center of the bed - you know the way he should have been laying in the bed, not across it.

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The first time he pulled this stunt he was able to slide off and stand facing the bed, but this time because I had tucked him under and caught his lines in the bedding he was stuck and had to roll over again.

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Believe it or not he was actually stable here. I had to rescue him though because he was standing on his syringe pump that was sliding out from under him on the carpet, if he'd have landed on the floor not the pump, he could have stood here for a while. I'm curious to see how this trick works out next time.

Day 22: Really on this planet!

Lol, I know it seems like we fell off the planet, really we didn't, it's just been getting used to being here alone and the fatigue that comes with every 6 hour IV antibiotics and a rather less than comfy bed. But we're still here in Omaha, still on this planet and John is doing rather well. So let me catch you up...

Last Friday came and went. John learned how much he liked his play-doh

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and did actually show the physical and occupational therapist a bit of what he can really do.

Saturday was long and quiet, a nice time to rest and get ready for dad to come visit. It gave us lots of time to read books and we enjoyed some of our old favorites that we brought with us and a few that we got from the library here in Omaha.

The Story of Little Babaji by Fred Marcellino is one that we will actually be checking out from time to time. John rather enjoyed the tigers and got more into the story each time we read it. The story is basically that of Little Black Sambo, but done in an Indian setting and is delightful, the illustrations of the tigers are priceless.

The Proud and Fearless lion by Ann and Reg Cartwright is another that we will be checking out occasionally. The illustrations are great, the story is pretty good and despite the somewhat anti-hunting bent the book is over all pretty good. John likes the roaring lion, who wouldn't!

Sunday drug past, actually time here seems to do that anyway, I always have to check the day count to see how many it really is, because it certainly feels like the time creeps by much slower, at least the time that Mark isn't here. The time that he is here flies by us and we are saying good-bye much, much sooner than any of us are ready for.

We missed church Sunday morning due to a phone mishap, but are looking forward to going to Bible study tomorrow night and getting to church next week. Surely we are in some type of time-deception zone here because the month that passes between each Sunday is very slow, but the 5 minutes between the time that Mark gets here on Sunday night and then leaves again on Wednesday blows right past us. Mark is on his way home now, John and I are hanging out waiting on the nurse to come and help with John's central line dressing and John well John is practicing his new talent, taking off his diaper and unpacking any bag close to him.

Mark got here Sunday evening. He was able to see the difference in John immediately and soon realized that the 11 days he had been gone his little guy was growing up each day, and had new tricks, talents and strengths to share with him. Mostly to start with he had lots of hugs and kept looking just to check and make sure that dad wasn't going anywhere. The rest of today will be hard, I'm sure this afternoon we will be searching the hospital high and low before John will finally admit that dad is really gone.

Well okay John has a new trick, hmmmmmmm, can't wait until dad comes back to see this one, when I turned around from the computer he was standing next to the bed with no diaper on, lol, I'm sure this is going to lead to new adventures and trouble!

Mark being here was great, no it was the best. He was here to meet Lillian and take a tour of the JP Lord school where she works. Lillian is the lady that takes us to church and the school is a tiny arm of the Omaha public school system that is just for special needs kids. John enjoyed getting to run into all the rooms and say 'hi' to the kids, teachers and aids and most of the teachers and aids decided that they wanted to keep him. Ah, poor people, they have no idea the trouble they would be asking for.

Monday we took John to the Omaha Zoo. The zoo is amazing, we didn't get to see all of it yet, but plan on making many repeated trips. John was thrilled with the aquarium where we could stand and watch the sharks and rays swim around us and over our heads. He loved seeing real bears and when the big ape stood up and hit the class John was ready to see more of the show! We are very thankful that the zoo has provided free entry for the residents/families of the Lied center and we look forward to going back again and again.

Tuesday was John's 2nd clinic appointment. Everyone was disappointed with the no-weight-gain according to the scale, but just looking at John his stomach was less distended and his little arms and legs are more filled out, so while the scale couldn't tell the difference the docs and nurses could and we are going on the surgery schedule for the 1st week of October. Over the weekend John developed a horrible diaper rash, so he was put on oral fluconazol to handle that and thankfully we are nearing the end of the every 6 hour Zosyn. We should have a more specific surgery date by next week, and also have an appointment with hemotology so that John's clotting issues can be nailed down before surgery.

While Mark was here we got some stuff straightened out with the bed here so that it is more comfortable, got to spend some time watching Lost on the internet and even had the chance to read a good book - many to John, one for me and Mark listened to one on the way here and is listening to one of the way back home.

I got to read the Wednesday Letters by Jason F. Wright, actually started it yesterday morning and packed it in Mark's stuff for him to take home and read after I finished it last night. Excellent book, I'm normally a thriller/mystery reader and this is certainly not either one of those, I'm also not a big fan of Christian authors because rarely do they write a compelling story, but this is a Christian book, all about the power of forgiveness and an excellent, page-turning story that I'm sure I'll read again and again. Actually it's good enough that my next trip to the most dangerous store in the world, Barnes and Noble, will be for his Christmas Jars book.

Mark is listening to Big Bad Wolf by James Patterson on the way home and I'm hoping it's great because then I can put it on my library list. Which I get to make one finally, because I went today and got my pin number again. You know there are days that I'm positive that I'd wander around in circles looking for my head if it wasn't attached and so visible. Lol, I dyed my hair again, new color, um, probably not this one again, but at least for the moment it's not full of grey and maybe no one will ask if I'm John's grandmother this week.

For the moment I have The First Commandment by Brad Thor that I'm going to start reading while John is taking his nap, and the latest edition of Jim Trelease's Read Aloud Handbook that I'm reading bits and pieces of for the 3rd and 4th time. All this and Mark brought up my sewing machine, coverhem machine and fabric and such so that I could sew, maybe the time will speed up and that month between Sunday's will turn back into days and those years between Mark's visits will turn back into the weeks that everyone else lives.

John got to meet his new speech therapist today, we were really impressed that she chose one of his favorite books, Where's Spot? to warm up to him with and also that she used good signs and no baby talk - baby talking to John is a sure way for him to think that he can outsmart you and work around you to get what he wants. I think this lady is going to work out nicely while we are away from our treasured Mrs. Amy. Beth, the new speech therapist, is going to be working with John's AET device, teaching him that it is a way to talk to those people who don't understand sign language and not just a video game to make a bunch of racket with.

Oh, and C, if you've read this far, Mark is on your side and I'm thinking through what you suggested, actually toyed with it on paper a bit, we'll see, no promises, but I'm at least thinking about it.

Several people have asked about where we are living and I'll try to take some pictures this evening when silly man is done napping. I've also been asked by quite a few what we need, really we're doing well and I can't think of anything specific that we need at the moment. Knowing that everyone is praying for John and us, that we are loved, that's the main thing right now, it's nice to know we aren't alone!

Thursday, September 13, 2007

Day 16: New Day, New Dressing, New Attitude

Yesterday finished up with yet more mail, a nice card from St. Paul's, Mark's country congregation, another bright spot for our day. It's always heartwarming to hear from home! We had beautiful weather for a walk around the 'block' and a nice evening to cuddle and play when we got back.

Today has been great! The sun is shining and it's beautiful outside, and the attitude of the toddler makes it beautiful inside too. John played in the room this morning while I was mending some pants and little silly man, blocks are fun if mom is stacking them up so that he can knock them down but once I'm done, so is he, well right up until he realized that they all had pictures on them and then he was pulling them out of the box and telling me what was on them and asking what the things were that he didn't know. People are forever asking me what kind of toys that John likes and I can't imagine what goes through their heads when I tell them that he likes books and flash cards, I've never met a kid like this but really he would rather sit and drill signs and learn new signs than sit and play with anything. He will cuddle and love on his stuffed animals, each ones gets a kiss and a hug or two, he might even give them something to eat and drink if he has a cup and spoon at hand, but really if the choice is anything and playing something that resembles flash cards or book, it's the flash cards and books that win out every time.

Okay, his other favorite thing to do is to explore the world in his gait trainer, lol, this morning he was exploring a little more than I realized and scared me. I was in the shower and left the door ajar so that I could hear if he needed me, I thought he was out playing with the remote, reprogramming the tv so that the picture doesn't work as per usual, or opening all the cabinet doors or such, and then I realized that the shower curtain was moving and something was coming in the shower. I had already jumped and gasped when I realized it was him, he thought this was hilarious and so spent the rest of the time that I was in the shower backing up and then moving the curtain again to see if he could make me just and scream, of course the entire time he was doing this he had the hugest grin on his face and kept giggling. What a stinker!

After lunch we wandered a bit and then he was reluctant to come back to the room t have his central line dressing changed, he'd much prefer to play with the water fountain and run around outside in the parking lot, but was good even on the way back. He laid nice and still for the nice nurse to change his dressing, actually still enough that it makes me think that I could do this on my own, but I think I'll give him a couple more weeks to decide if good and still for this is going to be normal mode. It's been a very long time since we've had regular 'in-home' nursing visits, but the nurse that comes out is nice and friendly so we are glad of her company and her assistance. John was particularly good for her today and even kept his leg still so that she could easily get a blood pressure reading. All vital signs are good and as soon as she was done he was ready to run back out the door!

With no appointments or things to get I let John decide where he wanted to go. So we walked up the ramp in the Lied center and ran back down it a couple times, although medical students were coming and going on the ramp at the same time we were there, no medical students were injured during this show! Neither we little old ladies with walkers, or white coated docs either. John played behind the columns on the same floor for a bit and then decided that it was time to try going backwards through the cafeteria. Inside the cafeteria he got to stay and watch the revolving tray return to his hearts content and then after being persuaded that he was not going to get a box of cereal until supper he decided to go back through the cafeteria again. This time I showed him where the ramp was to the outside dining area, and it is now our new favorite hospital place, at least when the cafeteria is empty and no diners can be maimed or scared to death when he comes down the stairs. There are a couple very shallow stairs at the side of the ramp and his gait trainer bounces right down them like it was designed for this and so I let him go up and bounce down as many times as he could get up by himself. He had a great time and entertained everyone around!

It gave me time to visit with one of the cafeteria ladies, she talks to John every day, she just loves him and wants to take him home and keep him, lol, yet another sweet lady in John's life. John has a gift of bringing joy and delight to all around him, he is a constant reminder of how valuable life itself is and how God has a purpose for even the smallest and most frail of life. John attracts people, he makes them smile and as much as has been given to him in way of medical treatments and such he has given to others in joy. It has been amazing to watch and we can only dream and wonder what this little guys future holds.

For now the little charmer is napping peacefully, storing up energy to run ramps and bounce down stairs and who knows what else when he awakes.

Wednesday, September 12, 2007

Day 15: That Day...

...or rather that night, and hopefully as the day goes on it will get better, ugh!

No matter what has gone on in my life, no matter how good or bad things are going, it just seems like there is always in place that one disaster day where everything I touch just doesn't work right. Last night was the beginning of that day, lol, tpn issues, pump issues, issues in general, ugh, ugh, ugh. So because of issues the toddler didn't get as many calories over night as he usually does, he's okay he's just a bit on the crabby and stubborn side, hmmmmm, that's par for the course as today is the day that he is meeting the OT and PT for them to evaluate how/what he can do. Oh well, I suppose it will give them something to be pleasantly surprised by when they meet him on a good day and he just blows away all the things he supposedly can't do because he's tired, crabby and stubborn today. Somehow, that just seems like normal kid, no wait, I know me, it just seems like normal :)

For the moment he's napping, curled up with the new blankie that Jenny from Loopers sent him, thank you, it's perfect, we love it! He ran around with the bubble wrap from the box that Julie and her kids sent to him, thank you, we can't wait to play in this one, it looks like so much fun. And of course he's steadfastly refusing to even look at the sippy cup that came in the box that dad sent because he just wants ice not a drink, mom!

The mail has has been a bright ray of sunshine for our day and will be remembered long after the issues, stubbornness and such are long forgotten.

Tuesday, September 11, 2007

Day 14: First Clinic Appt

Today was the first time that we've actually gotten to go to the IRP clinic for the normal weekly visit. John's labs from yesterday are all good, his weight is up to 9.7 kilos that's a whopping 1.1 kilos higher than admission weight 2 weeks ago, that's 2 pounds 7 ounces in 2 weeks.

We got to meet with the feeding therapy doctor and her fellow, it was a nice conversation and basically they teach the kids to like the things that they need to eat. I must admit that I was a little incredulous when she told me that they would teach John to like drinking his Neocate formula, the doc claims that she could teach kids to drink motor oil if she wanted them too, this didn't help my incredulousness but when she compared it to teaching people to drink coffee, which to me is vile, I finally get it and am looking forward to seeing her at work. Now if she could teach me that lettuce was better tasting than say cheesecake that would be amazing!!! For the most part she won't be really working with John until after surgery.

I got to meet the head surgeon today, of the 35 STEP procedures that she's done there has only been 2 cases with complications, both completely resolved and only 1 of those needed further surgery to resolve it. She did say that if it was easily gotten to that she would remove John's gallbladder at the same time that she did the STEP procedure as short gut kids have notorious gall stone issues and it's better to just get it over with now then wait and have to cut him open again later. We talked about John's stomach muscle issues and she had already been giving some thought to a few options there and she will be checking records to be on top of his clotting issues. I was very impressed with the whole group, it's also nice to know that I can call them at any time.

I did get to ask the surgeon the one question that I get asked most: How long will we be here? Followed by the next most asked question: When will John be ready for surgery? The answer to the first was at least 3 months, but she doesn't think we'll be here for the whole year, of course anything can happen between now and then. The second answer was when he doesn't look like all skinny arms and legs. What she explained is while he may have the reserves now to endure the surgery, he wouldn't have the reserves to recover from any complications and it's better to be prepared for the complications and not need the reserves than the other way around. So there again, when it all comes down to it the answer to both questions is really that only God knows.

All in all that's not really that hard of an answer to live with right now. We came here with in mind that we will be here every day of the year and are willing to stay longer if it means that John has a better chance at life, any day shy of a year will just be a present.

The one thing that we did find out at clinic that will make life easier between now and surgery is that it doesn't really matter much what he eats. They are really not counting on his gut doing much to help him gain weight, so a little sugar within reason isn't going to hurt him so long as it doesn't cause him to go into diarrhea or anything. He was thrilled to be eating Frosted Flakes for lunch. The hard part is that I am supposed to make him lay off the ice some. Silly kid, he eats ice like other people chain smoke or drink and lately has been chomping about 64 ounces a day, that's a lot of ice no matter what size you are and for someone John's size it's a ton. So we're working on limiting the ice without totally ticking off the toddler, so far today it's been successful, we'll see how this evening goes.

Monday, September 10, 2007

Day 13: Saved by the Nice Doctors!

Normally when you hear someone say that the doctors saved them it's followed by some great medical advancement or great surgical skill or such, no such story here today, but John was saved by two nice docs non the less. Today while we were wandering about he came out of the elevator at a funky angle and as the door tried to close it caught the back wheel of his gait trainer in the door. It was stuck in there hard enough that I couldn't budge him. The first doc that came couldn't either, but when the second doc came and they both jerked on it they were able to free the piglet from the elevator!

Our mishap with the elevator was entertaining to all around, including me and even John, it was the perfect ending to a Family Circus kinda errand running morning. When I was a kid we loved to read Family Circus and the little kid that had to detour through the whole house, yard and neighborhood to get from one place to the next was always funny, well today that was us.

We started out late this morning, because hey, we finally slept. I did tuck John in last night, on one side, which prevented him from wagging his legs in the air but he was still awake and ready to be changed when I set up his 4am Zosyn run, so no sore bottom, but sleep, yah sleep! The other sleep challenge around here has been how to set the thermostat so that we are comfortable sleeping and yet warm enough, sleeping alone is cold but finally last night I put the sheet on top of the blanket and was able to sleep without waking up every little bit looking for more blankets. Sleep makes everything better!

Just as I was getting done with John's improvised sink/salon bath. With his central line I can't put him in the shower, so I lay him on the bathroom sink, wash his hair like he's at the salon, and then sit him up and give him what my dad would have called a 'spit' bath, you know a wash cloth and soap, a good rinse, but no actual immersion, hmmmmmm, maybe it could be a Lutheran bath :) Anyway, just as I was wrapping him up in a towel to bring him out and get him dressed the cleaning ladies came. New ones today that we've not met before so John was totally distracted and spending all his time trying to catch their eye so that he could smile and wave and blow kisses to them. The boy loves cleaning ladies, and well so does his mommy. Often times in the hospital it's the cleaning ladies that have time to talk and visit and you end up knowing more about them and their kids than about the other staff.

We were headed to lunch, as breakfast had long passed us as we comfortably snoozed, when we got the call that John's new enteral pump was here, so we made a detour for the pump. Instead of going to lunch, I figured we might as well go ahead to the blood draw and then come back to lunch, part of the way there, John decided that he really needed cereal, his chose food of late, and ice now and couldn't wait any longer, so we turned around and went to lunch. We've not been in the cafeteria right at noon before, holy cow, there are a lot of people here. We found our normal seat and the high-chair that I'm sure John is going to be just heart broken if he ever sees another kid in it, and sat down for lunch. About half way through our routine of bites of cereal and ice, I told him that we needed to go back to whole sentences because we were getting lazy and just using one word for what we wanted again. Now I figured that I'd have to coach him through the first couple times, but he just looked me straight in the face and signed 'want more ice please mom' and then gave me that many words all the way through the rest of lunch. After that we meandered over to the diagnostic clinic for the blood draw and once there, had to wait for the better part of an hour before John's name was called.

John decided that he wasn't really interested in the tv after the teddy bear commercial was over, and the magazines weren't that interesting either so he walked around in circles and waved and smiled at all the people who were waiting to have their various tests run. One couple finally asked about the tubes and such, and how old, and those kinda questions and as we talked the lady reached out and touched John's hand and told him that he was a great blessing to all these people here, because today he made all of them smile, he smiled and said thank you and kept walking and entertaining everyone. Finally he decided that he would try a magazine again and after we looked at the animals in a couple National Geographic's his name was called and he was ready to go see what they had been hiding down that hallway that he'd not been allowed to walk down before. As always he was exceptionally well behaved for the blood draw and thanked the nice ladies for the band-aids. It took them two attempts but they were able to get his blood peripherally, which means less risk of infection for him.

A trip over to the pharmacy to pick up the new meds that we're hoping will straighten out the current bottom/tummy issues and let his g-tube feeds advance netted him two more ardent fans, both of the pharmacy ladies wanted to just keep him and take him home with them. I told them that they really need to watch the Ransom of Red Chief movie, thinking in my mind that once he was behind that counter with all the shelves of neatly organized bottles and stuff they would regret any such decision to keep him and be spending the better part of the night trying to put everything back that was within his reach.

John is now used to the hospital here enough that the fascination for just wandering is pretty much gone, now he has to feel the texture of the walls, see if he'll fit between the column and the wall, see if he can reach anything on the doors or the handicap door buttons, and certainly all water fountains must have their buttons repeatedly pushed before he can leave them be and go where he needs to go. He's also decided that instead of walking he'll hold my finger and let me drag him here or there, and every so often hold it with both hands and ask to go fast, i.e. have me walk as fast as I can so that he can zoom. Just day 13 of what could be 90-100's, makes me wonder what will interest him as the days go by.

The nicest end to our morning/afternoon was a box from home, I figure it is going to take a small U-haul trailer to get us home from here when all is said and done, and maybe a big one as the list of things that Mark is bringing when he comes up this Sunday has grown to the point that I'll be impressed if he can get it all in the Jeep in one trip. We've decided that it's time to bring the sewing stuff here, after all everyone needs new clothes, and Mark needs new clericals too, and I might even get to do some Christmas presents or work on my nephews school clothes, we'll see. It should be interesting. I've heard of several ladies here that have sewing machines in their rooms, and even one that is running her sewing business out of one of these rooms, no business for us now, but some personal sewing would be a boon to our dwindling wardrobes and the sanity of the mommy.

Well a little boy is awake and proceeding to change his own diaper, I think I'll post and go help before he accomplishes more damage than good ;)

Sunday, September 9, 2007

Day 12: Settling In

John was finally discharged on Friday in just enough time to get some supper, get our shipment of medicine and put him to bed. He was glad to leave the 'hospital' but a little dismayed to still be here and not going home. After all, where we are temporarily calling home is just one elevator ride away from a place where I took him every day that he was in-patient. We've both told him that this is home for a while, slowly that knowledge seems to be sinking in, not just for John, but for us grown ups too. I must say that I can't imagine how some of the moms around here do this with all the meds, tpn, formula and such and have not only their kid being treated but other kids here too. We met one such mom in the elevator yesterday and she and her kids have been here since February, we've barely broken double digit days and already home seems a million miles away and I only remember details of home things when I stop to really think of them. That is one of the things about this that is so weird, not only while here doing this, but also when you go home, a trip from Earth to Mars could be no stranger than the trip from hospital (in- or out- patient) to home. Now, I'm not complaining, there is really good stuff here, many things to be thankful for and not the least of these is the nice cleaning lady that comes daily and the modern technology that lets me stay in touch with friends and family.

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Probably our favorite piece of modern tech is the cell phone with speaker phone on it. Because of John's hearing aids it's hard for him to hold the phone to his head and hear, doesn't help that he keeps moving it so that he can look or give kisses to whoever is on the phone. Speaker phone has solved that and John now gets to hear daddy talking several times a day, and nearly always at night to say prayers together. Having the cell phone also allows us to wander, walk, ride and go and see, even if just up and down the hospital corridors without worrying that someone is trying to contact us.

Not quite 48 hours into our out-patient life and we are starting to find ourselves in a routine of sorts. Meds and tpn dictate a lot of life, but really John only has 2 appointments a week, so far, one Monday and one Tuesday so we have lots of time to read, play and wander, actually I think wander is what we do best.

After John took several walks through the hospital yesterday in his gait trainer, he got to go for a ride in the stroller. He used to hate this thing with a passion, but now loves it and is eager to ride again this evening. I thought we'd start our exploration with a simple walk around the block, lol, well explore we did, as a walk around the block actually entails about a five block section of town, but it was good to be outside and hear the birds and bugs and feel the breeze, albeit I still don't want to know what feel out of the bird-laden tree and hit me in the head. I would have never thought of Omaha as a hilly place, maybe it's not compared to the San Francisco that we see on tv, but compared to Slater, wow wee there are some doozies around here. I think we'll be sticking to our 'block' for a while!

Last night we got a call from the couple, Calvin and Lillian, who offered to give us a ride to church this Sunday. I'm always nervous meeting new people, and going to new places, especially new churches, today was wonderful. Calvin and Lillian are very nice people, and their church is perhaps the most friendly, inviting church I've ever walked into, not to mention one of the liveliest. I've never been in a Lutheran church with a gospel choir before, I've seen big fancy choirs that make the worship service more of a concert than a worship service, but this group of people helped transform an already beautiful church setting further into holy space. This is also my first time to attend a predominantly black congregation, yet with the TLH liturgy woven through this lively service it was at the same time very different and so totally home. It was so great to stand amongst other believer and proclaim our faith, receive forgiveness of our sins and pray for those in need. What a reminder when we prayed for the members of their congregation that are serving in Iraq, the most stressful day in the hospital is still air conditioned and no-one is shooting at us! We are looking forward to attending here for the duration of John's stay in Omaha, and even today I'm positive that saying good-bye to them will be hard when the day comes that John gets to go back home to Missouri. Bible study is Thursday night and we are looking forward to getting to attend. These moments of normal life are helping to make this a home away from home, and helping to keep the sanity of the mommy at least as in tact as it has ever been.

On the way back from church they showed us where Lillian teaches at a special-needs school that is in the 'block' that we walked around yesterday. The principal was there and invited us in to take a quick peek at the school, John was excited and signing school, we've been invited to come back this week to see it during school hours and are looking forward to doing that. We also saw that the Munroe-Myer Institute is in our 'block.' This is the Institute that has the best child-adapted pt, ot, and the kind of speech therapist that John needs. I had toyed with skipping therapy all together this year because I was afraid that it was going to be several bus-transfers away from here but here is the place right in our 'block.' So we will be checking them out this week as well. We know that John can see the speech therapist there as she works for Shriner's and all care there is free to the child, but pt and ot we will have to find out more about later.

John is napping now, I guess this is when I'll start updating the blog and answering email, the rest of the time is spent playing, walking and such, and at night John is too light sensitive to sleep through me sitting in here with the computer on, but that's cool because it gives me time to go sit in the other room and watch the end of the Lost dvd's that Mark sent me :)

Mark is going to make John some side rails for his bed. Poor kid, he's such a shrimp that he still sleeps in his crib at home, and normally in a hotel room it is 2 doubles, 2 queens or whatever and so we can put him in the middle and while he wiggles some he doesn't get near the edge. Now for nap he is fine, but during the night I keep waking up to legs swinging over the single bed that he is sleeping on. This morning he just wanted to come to bed with me for a while. Partly an insecurity with the bed he's sleeping in, partly because he's a cuddle bug and always has been. Funny though as he gets older he wants to cuddle but not, you should be there but be prepared to move over when he's ready for some space, as you can see it didn't take long this morning until he had the bed and I just gave up!

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Oh, and by the way, that's my pillow that he stole, and my blanket that he didn't exactly want on him, but don't put it on you either. I am planning on tucking him in to his own bed, well as soon as I get the med change reversed. He was on a medicine that binds bile salts and they wanted to see if he needed it anymore, um, yeah, he badly needs it as his little bottom is now sore enough it looks like we've been toasting him on the grill occasionally. Until that is settled, I'd rather have him wake up a few times a night to get changed, but once that's fixed, it's side rails and tucking him in time cause mommy needs to sleep!

As always thank you for your prayers. So many have been answered for us, everything from a fever not being a line-infection to a few extra diapers to make it through until the boxes arrive from home, and many things in between, mostly today to meet some wonderful kind Christians and find a church home away from home where we can hear the Gospel clearly proclaimed and find that peace that comes from Christ's Words of love and forgiveness even here where we are, home away from home.

Friday, September 7, 2007

Day 10: Right Upper Lobe Atelectasis!

Also called pneumonia, hooray! Why would be cheering for pneumonia? Because it is the best possible answer. Little kids don't pop 39.6C fevers because they are bored and have nothing better to do than scare the grown-ups around them, and so there had to be an answer. He's had a little nagging cough ever since the line was placed and the scope was done and we sorta thought that it was just sore throat, mine would be after having all that junk shoved down it, but nope it's a little aspiration pneumonia. This is one of those things that is possible with any surgery and this one is caught, being well managed with Zosyn and we get to go back to our nice out-patient room! John is feeling great today, he played nicely with the Development lady and this time was good and showed her just how smart he is and how fast he learns things, he also had a good time with an online Fisher Price game that I found for him, ate a little breakfast, we read some books and he is down for a nap. This afternoon sometime he should be discharged and we will be on Zosyn every 6 hours for the next 12 days. This is so much better than a line infection which would have seriously interfered with continuing his little baby steps of putting on weight and also much better than a UTI on his little fragile kidneys. So yep, we're celebrating pneumonia today, and are reminded once again that God's ways aren't ours and His blessings can come in the most bizarre forms.

Thursday, September 6, 2007

Day 9: Time for Bed

The day continued great and John looks better right now than he has in a while, I actually think he might be gaining weight, I don't know, he has the full face look like when he's on a little high of IV fluids, but he's not running high on IV fluids, so maybe it's actually weight, that would be awesome.

The lady who coordinates therapy here brought John a Charries chair and little table. Wow, the workmanship in this thing is amazing and it's short enough that when he sits in the chair his feet are flat on the floor, barefooted even. The little table has a cut out in it so he can kinda be in the table, if you know what I mean, and is the perfect height to go with the chair. After his nap he was eager to get in it and play with the little barn and animals that the Child Life lady brought him. This evening he wanted in it again to read books and play again too. It's nice to have stuff around that's actually tiny enough that John fits in it right.

We spent a couple hours this afternoon walking the hospital hallways and ate dinner at the cafeteria. John has eaten a bit all through the day and finished out the night by sitting on my lap scarfing down cereal. All in all he's been a happy, fun little guy, waving at those who pass in the hall, 'talking' to people in the elevator and having to be bribed to go back to his room. Having him happy and smiling makes everything in the world better.

Thanks for all your prayers, we'll know tomorrow afternoon if John will remain in-patient or not. At this point his blood cultures are still negative, I've been worried all day what would happen if they stayed negative and then we stopped antibiotics and he got sick again, then it dawned on me we never did urine cultures and now that he's been on antibiotics this long it's too late. I talked to the nurse about this concern tonight and will be talking to the team in the morning, we'll see what the day brings. For tonight a little boy is sound asleep, he was excited to say prayers with dad, brush and floss teeth and then crashed, so much more his normal self.

Oh, btw, we still have our Lied Center room, so our address is still the same, the deal is that John's Missouri Medicaid will pay for the room whenever he is out-patient and we pay for it while he's in-patient. Medicaid is still such a hard thing for us and we earnestly wish that we could pay for John's medical care on our own without having to rely on taxpayer dollars, but life is too precious to not use every resource available to make it the best it can be. Yet another in the long, long, long list of things that we have to be thankful for!

Day 9: Sunshine and Smiles...

...and even a few bites of actual food!

John was afebrile through the night and woke up this morning looking great with big smiles on his face. He's been pretty good throughout the day and even ate some for lunch. At the moment he is napping, afterwards I'm hoping he's up for a ride through the hospital to go and see Bob and Tom.

His feeling better today has given me more time to reflect on what we learned from Brandy, the nurse coordinator, yesterday and so I thought I'd share some of the things that we found interesting, not that any of it was boring. One part of their program is feeding-therapy, short-gut kids have a hard time eating, not only just because of all the things that they've been through and go through on a continual basis, but also because their caloric needs are often met or nearly so through IV TPN or g-tube feeds of one formula or another. About 6 months ago a feeding therapist and her entire team and all their families moved from Atlanta, Ga to come here and be part of this IRP and Transplant program, they are having great success and even though John does eat, and heartily at times, we are glad that they will be around to help. They are successful enough that they have bowel transplant kids that are not only g-tube-feeds and TPN free, but have become so reliable at eating that their g-tubes have actually been removed. They tell us that while some short gut kids have managed this, that it is all but unheard of for a transplant kid. Because John's small intestine is so dilated the team isn't really expecting much from his gut, in way of helping him grow and gain weight before surgery, but keep running g-tube feeds and encouraging him to eat because that helps keep the gut bugs busy so they don't have as much time to be crossing the gut-wall and causing infections and also helps avoid liver damage from the tpn. The surgeon will make the preliminary determination of what bowel surgery she will do on John as soon as the last test results are all in, but will not be able to make the final determination until she has him open and sees exactly what is in there. There are kids who have a step procedure done and then several years later their bowels dilate again and they have a second one done. The surgeon is also the one who makes the final determination when John is ready for surgery and there is no fast and hard rule as to how long it will take or exactly what it will take, but one of the things that they are looking for is for him to begin to follow the growth curve again, he hasn't done this in a very long time. When Brandy found out that Mark was going home yesterday and not coming back until the 16th she was telling him how much of a difference that he will see - here's hoping that if not this visit, one soon he will need to bring the kid some bigger clothes, lol, it sure would be nice if he could get out of 12mth pants that are too big for him, by the time he is 4.

So far we have been really thrilled with this program for John and look forward to good things from it. These guys are used to seeing miracles and though John is one of the more malnourished kids that they've gotten in here, they are expecting to see great things from him, and so are we!

Speaking of those kind of things John has been doing some strange bent crossed finger thing lately, almost like he is learning to snap his fingers, but yesterday he figured out how to hold them straight up and cross them and so today everyone who has come by has gotten to see him crossing his finger just for them :)

Wednesday, September 5, 2007

Day 8: Same Room, Same Nurse, Different Day

John had a hard time tolerating his feeds last night, and threw up several times. We knew that something was wrong when we took him out to dinner after his discharge and he wasn't interested in the food. It did give us a chance to call the Nurse Coordinator for the IRP program in the middle of the night and see how that worked, excellent. John still wasn't feeling the best this morning, but was eager to go for a ride in the Jeep so we took him to check out where the closest Lutheran congregation is, close but well out of walking distance, and where the closest library branch is, close and within walking distance on a nice day. He was thrilled to see that the library had one of his favorite books and has been telling me "Bear Wants More" every time the subject of books came up. But again he had no interest in lunch, despite it being something that he would normally enjoy.

We got back to the Lied center in time for him to have a bit of a nap before our appointment with Brandy, the coordinator that we woke in the middle of the night. Again he showed us that there was a problem as he chose to sleep instead of walk. During the appointment Brandy explained a lot to us about the IRP program, how it works and what to expect of it, and that they followed the kids for life once in the program and provided support to local doctors when we went home, all good things to hear. What wasn't good was that John was progressively warmer throughout the meeting and fell asleep sitting up next to me, instead of playing with dad's pen and trying to get to the all-to-close kleenex box.

Brandy had planned for us to go for labs, and we were glad they were scheduled because by this time John just wasn't acting his normal self at all and we were both worried that there was something wrong beyond just tired from staying up puking part of the night. Dad went with us to the treatment center for labs, but had to kiss us good-bye and head home before we actually got in for our appointment. One of the nice ladies brought John a little stuffed dog and that was a great distraction. Once in the center itself it became evident to the nurse that was doing the labs that John was more than just a little under the weather and she called in the IRP Nurse Practitioner who took one look at John, ordered more labs, and started him on antibiotics and admitted him.

So here we are, same room, same nurse, about 20 hours between discharge and admission but John seems to be resting much easier and the fever that he spiked has abated and not returned, despite the length of time between tylenol and now. I am rather impressed with the approach that was taken to this, and one of the nurses told me that they see this a lot, little kids with guts full of bacteria with line infections before the bacterial overgrowth can be managed completely, that they wouldn't know what to do with a normal childhood illness but give them a kid with a line infection and they all knew what to do. For a group of people who do not really know John much beyond test results, and have not seen how fast he can get sick and deathly sick at that, they moved very quickly not only to get antibiotics and antifungal drugs on board but also to monitor him and watch to see if he was heading into sepsis. All danger has certainly not passed from this current infection but he certainly seems to be on the upswing of it already.

This episode, while confirming our fears of a central line, also confirms our choice of where to place John for this treatment. Not that others have not handled this well and often for him, they have and saved his life doing it, but that this is part of the routine of treatment here and expected and that they were so ready for him to tank on them just tells us one more time that it's good to be here in this IRP program.

I have lots of unanswered email, I'll get to that tomorrow, it's been a very long day and rest in-patient is never what it is out-patient. Brandy, the nurse coordinator, told us today that with line infections they don't hold them in-patient any longer than it takes to stabilize them and get them on the exact right drugs, so we expect to be out again by the weekend, maybe even on Friday. Dad won't be returning until the 16th and by then a little boy should be up and feeling great and ready for that promised zoo trip!

Tuesday, September 4, 2007

Now we're moving... the Lied Transplant Center, essentially a hotel attached to the hospital. Ronald MacDonald was full, so we are here, lots of pluses to being here, including that John's appointments and such are on the 2nd floor of the same building that our room is on the 7th floor of. The big drawback, no kitchen to cook homemade meals in, but at the same time that's a blessing because Mark and I have been a team with all these meds and feeds and tubes and pumps and now I'm going to be learning to do them on my own, so for the time being not having to worry about making and cleaning up after meals is going to be a blessing too.

The new address is:

John Hass Room #7708
Lied Transplant Center
987600 Nebraska Medical Center
Omaha, NE 68198-7600

Well I've got everything moved in for the most part, at least our personal stuff, now it's time to go and meet the medical supplies person and find get all the needed pumps and such and move a little boy into his new home.

Day 7: Answered Prayers

John woke up this morning and immediately wanted a drink and was none too pleased to find that he was NPO yet again. But with a nice shower with dad and the promise of going for a walk he was okay. While I was getting him dressed we explained about his test, he took it well enough that I wasn't sure he completely understood what we were telling him. I should have known better, we were out walking and dad was waiting in the room to call us and tell us that it was time to come back, when dad called and I told John it was time to go for the test he looked at me, turned his gait trainer around away from the way we needed to go and ran! So we held hands all the way to the test, well except for the big ramp to run down, nothing ever deters the piglet from the fun of running down a ramp. He reluctantly walked into the room where it was done, said bye to dad, who doesn't hang out for these kinda things, and sat up on the x-ray table like a big boy. Thanks be to God the lady that said that he had to be strapped down for this was not the one working with us today and the lady that He sent told him that if he could be still he didn't have to be strapped down. John laid on the table for the preliminary x-ray and then when the docs came in to do the test he shook their hands and laid back on the table like a big boy. I was amazed, actually no, I was impressed and so thankful, I could tell that he was uncomfortable, who wouldn't be with this test, but he laid there and didn't cry, scream or even squirm, he held very still in every position requested and towards the end of the test was even looking at the screen where it showed the dye going into his colon and was showing me the camera that was taking his picture. At the end he sat back up, told the nice lady thank-you and then walked back to his room to see dad and have ice. As a parent I have rarely been prouder of my little boy than I was today, thank you every one for your prayers, all were answered with a resounding yes and John is now resting comfortably on his bed cuddled up with his blankie in a rather good mood, despite having drank a full 8 ounce diet coke down in a very few gulps the moment we got back and then predictably giving it all back, lol, seems kinda normal even.

I'll update more as we visit with the team today. The nurse coordinator came by and expects him to go out-patient very soon. She is a great advocate for John and will be in rounds today. I was able to explain to her that g-tube feeds for John seem to go better with either a large amount of free water added to them, or in 12 hour intervals so his gut has time to move them through. This made sense to her with his anatomy, so we'll see how that works out. She also explained to us the procedure of what to do if John got sick while we were out-patient and that since the new Omega 3 lipids are part of a study that is going on they don't have easy access to them, but since he can tolerate g-tube feeds and eat too he should get enough fat in his diet that he won't need to be on lipids.

Now just to wait on the team and to see what the rest of the day brings.

Monday, September 3, 2007

Day 6: A Great Visit and a Relaxing Day

Happy Labor Day!

We've spent most of this day hanging out together watching the John Wayne movie marathon on AMC. This morning we had a pleasant surprise, Dr. Srivastava and her husband Matthew came by to check on John and visit for a little bit. It was great to meet him, see her and she was thrilled to see how well John is doing. She has impeccable timing and was here in time for rounds and got to meet the whole team of docs that are taking care of John now.

While John is looking much better with each passing day, he was kinda under the weather today and they stopped his tube feeds for the day just to give him some time to rest up. He started the morning by puking up snot, but hopefully now that he's been put back on his Zrytec that issue will go away and all will be better.

Tomorrow is coming the test that I've been dreading the most. John is scheduled for a barium enema in the morning, we've not told him yet, as it just doesn't seem like something that he should have to worry about ahead of time. He's had this test once before when he was a little baby and it was traumatic to say the least, this time he has to be tied down, policy that I can't get around believe me I've tried, and I don't think that is going to help one bit with how bad the test is going to feel to him. He will be strapped to a board, arms over his head, straps around head and arms, and across the hips, legs and feet so that no matter how much he screams and struggles he won't be able to move so that the pictures will be steady. The thought of the test makes me sick, the thought of explaining to him what is going to happen breaks my heart. We have worked very hard to make sure that John understood that medical professionals weren't hurting him, that sometimes to take care of him they had to do tests and things that hurt but that they weren't hurting him because they were mean or liked it. Evidently this has sunk in with him as one of his favorite people in Columbia is Kim on the IV team and she has had to put more IV's in the child than anyone else ever has and he still loves her and likes to wave and blow kisses to her. The only thing we have figured for this test tomorrow is to let him walk there on his own if he wants, and then spend the couple hours after the test going and doing things that he likes to do, hoping that the incentive of getting to go and walk and such will be enough to help him endure the test. A very long time ago John was able to just shut down, to look off into the corner and pretend like the world didn't exist, that wasn't good and we don't want it to come back.

Thank you for your prayers all along, and please pray for a little guy who has a very hard test to go through tomorrow, one in which he must be fully awake and cannot be sedated for. On a much more positive note, we should know tomorrow when we will be discharged and where we are going. I'm sorry I haven't posted that address yet, but rumor has it that John will be discharged tomorrow and then it will be changing.

For tonight the sweet boy is cuddled up next to dad watching yet another western!

Sunday, September 2, 2007

Day 5: A Glimpse of the Future and A Nice Walk

We have finally reached the day when the new has worn off and John is done eating in this hospital. We've seen this before that he'll eat for a couple days, then he'll only eat ice cream and such and then he won't eat anything so long as he's in the hospital building. Well today's the day, 3 grapes for breakfast and that was it until dad arrived and we had supper in the cafeteria then he managed one bite of onion ring, and he was done and ready to go.

We did get a bit of news today, the surgeon told me on rounds that John is an excellent candidate for the STEP procedure and that they feel he'll be ready for it in a couple weeks. After that they will begin to wean him off of TPN and send him home. The weaning off of TPN is where the long haul in this is going to occur evidently, but even that is all in God's perfect timing.

Mark got here this evening and with him he brought the best invention ever. It's obvious that he was paying attention when he was growing up and got a few of those Wesley genes, as he came in with a dowel rod and metal pin fitted to one of John's gait trainer pieces and he now has a great IV pole that fits his gait trainer and let's him run the hospital. We were amazed that he could move the pumps as they are very heavy, but then of course he is a very determined little boy. He needed a little help up the ramps and it took a bit of learning to get used to having the pumps on the side as it makes him a little wider, but all in all he was pretty impressive.

The nurses have kindly arranged for us to all get to spend the night in John's room again, and so tonight we get to spend another night all under the same roof, that feels really good, even if it is a hospital room. We look forward to seeing what tomorrow brings and the rumor is that John will go out-patient on Tuesday.

Saturday, September 1, 2007

Day 4: Quiet Independence

Weekends at the hospital are quiet. When we started this journey with John and various hospitals over 3 years ago I hated the weekends, they were long and with nothing going on, no therapies, testing, or such they just seemed to drag on forever. As time has gone on though I've come to treasure these days and see them as a chance to catch our breath and just enjoy being together, especially in this whirlwind of testing it's nice to relax a little.

John's day has been really good. Early today we found out that unlike other places where being on isolation means that the child is required to stay in their room, here isolation means that if you leave your room you have to wear a yellow gown. Bring on the yellow gown!

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We have enjoyed several walks today. The hospital has a beautiful garden with a water fall in it, of course it's noisy so John would rather wander the halls, but the artwork here is fascinating and we have both enjoyed it. It seems like every hall has something new and today we've seen everything from photos of African children to life size sculptures of Thomas Jefferson, we're looking forward to going back to see the ones we've seen and to find new ones too. I'm surprised at how fast John has become accustomed to this new hospital and had to look twice to realize why he was so excited, ah yes, we were close to the cafeteria ;)

If you look close at the picture above you'll see that John has one little hand reached out to the wheel of the wheelchair. Well, in Columbia I showed him that he could push them that way and thought that he was just ignoring me as he didn't look overly impressed. Today after I had gotten him into the chair and was trying to transfer the last pump to the chair IV pole, I couldn't figure out why the silly thing kept moving on me, then I started watching the little hand creeping out of the side of the wheelchair and turning the wheel. If the wheelchair had been narrow enough for him to get both hands on the wheel at one time I'm pretty sure he could have made some headway, as it was he moved it a foot or so every time that I stopped.

I've been wondering how I was going to chase him in the gait trainer with the IV pole, and so getting the wheelchair today was a nice way to have some independence without becoming the hospital free show! Mark is making John an IV pole that attaches to his gait trainer so that he can walk and haul his hospital pumps too, the one IV pump is rather heavy so I'm wondering what that is going to do to his walking ability and stopping ability on the ramps, we'll see, hey maybe this way John and Mark will be the free show and I can be in the audience ;)

Pastor Wilken came today to bring the Lord's Supper to me and to visit with us, and we were very thankful to have him come. It is a breath of fresh air to have a pastor come to see us who brings us God's Word and doesn't try to placate us with empty promises of 'God will heal the little children.' You do not have to sit in a hospital for very long to know that little children die, and that sometimes God's healing is the eternal kind that takes the kid home away from their current suffering. While we always pray for the sick kids in the hospital and everyone who loves them and takes care of them, we pray not only for temporal healing but also for eternal for all involved. Pastor Wilken is a very nice retired pastor, not like those guys ever really get to retire, who is also the vacancy pastor of the closest Lutheran church to us, so we hope to be seeing much more of him as we go outpatient and get to attend church regularly. How blessed we are that the closest church is also a TLH congregation so I don't have to learn all new liturgy while I'm trying to relearn how to sit in the pew with a toddler attached to pumps.

The only eventful part of our day was when poor John exploded. Poor kid, the hospital beds here are the nicest that I have ever slept on, actually comfortable believe it or not, as they have a inflatable surface that changes to accommodate the body that is lying on them to not cause pressure points and such. This does mean though that you are laying somewhat in a depression, and so this afternoon when all the poo he has been storing for the past couple days decided to come forth the poor kid was literally sitting in a lake of his own making. Of course with his frequent dehydration issues I wanted to know what his heart rate was, and then when I realized that it had been high all day, in the 100's, I was worried that his CO2 was dropping. Well the elevated heart rate must be a function of some of the new medications because his labs are beautiful. It was nice to see that not only are his kidney function numbers normal, but his liver function numbers are now fully normal also. We've known for a good long time that this liver numbers were good, but have never seen them be absolutely normal. At one time John was golden yellow and his liver was so enlarged that it was down into his pelvis and all the way across his abdomen, now it is politely where it belongs and functions well. If finally dawned on me though that I did understand the FTT that is on the 'reason for admission' FTT stands for Failure to Thrive, that's a scary statement to have made about one's child. I knew when they were talking in rounds today that I heard them explaining to the visiting GI doc from Paris, France that John had been surviving but not thriving on his tube feeds of late, but didn't make the connection to FTT until I saw the lab sheet. This, of course, changes nothing, it's only a label on what we already knew, but still it will be nice to see that label go away in the future.

I've had several people ask me for an address and I'll get one posted tomorrow for the hospital and then as soon as we get to move to Ronald MacDonald one for there too. Thank you again to everyone, I'm always amazed at how God showers us with his blessings while we are in the hospital and the emails, phone calls and today's visit from the Pastor have been a shower of blessings which makes our passing days enjoyable despite the circumstances around us.

One last pic for the day, I'm sure that at some point John will end up taking over his own blog, but for now he has managed to import pictures into a Word Perfect document on his own, nearly deleted all the shortcuts off the desktop, and finally thankfully to shut the compute down.

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