Monday, March 24, 2008

Monkey Pox

Well that's not exactly what's wrong with John, but it could be with the number of times that he's watched Curious George, both movie and series over the past couple days. Actually they found out that he had a yeast central line infection. While yeast is wonderful in bread, beer, cheese and wine it's not so great in a little boys bloodstream. It does nasty things to a body, like 104 and 105 degree fevers, and if that's not bad enough the medicine to get it out does nasty things too like making little bodies shake so badly that Demerol is prescribed to let them uncurl out of the ball they are in. John had a very rough couple of days, Thursday night was worrisome, Friday night was nightmarish but by Saturday his fever was broke and he was feeling good and ready to play.

With no central line in his chest he is depending on g-tube feeds for nutrition and hydration and it actually looks like he might not need either a new line placed or extensive time in Omaha to not need the new line placed. John's labs are beautiful and we just need to keep an eye on them to make sure they don't drift, and that his weight stays up and continues to climb appropriately. With no central line he's had peripheral IV's for his anti-biotic and then anti-fungal drugs. He amazes me when it comes to IV's. He knows exactly where we are going when he's lost an IV and we head to the treatment room and yet he goes with me without a fight. He has thus far had 3 IV's, one placed under anesthesia while he was knocked-out to get his central line taken out, that one was in his left hand, one in his right hand which they got on the first try and then the current one in his right foot which took 5 tries to be put in and is now keeping him from walking. All this and he still sat on the bed last night for prayers and giggled when I dropped something, and made sure that his monkey had a drink before he went to sleep.

Saturday I knew he was feeling better when he wanted to get on the floor and play. I got him some more toys from the playroom and by the time a couple Curious George episodes were over the floor was covered with toys and there was a grinning little boy sitting in the middle of the destruction banging on stuff with a wooden hammer, running his cars over everything, pitching stuff under the bed to see how far he could get under there to get them back out and then he discovered the joy of a rolling tv cart. I never knew that the best part about a rolling tv cart was that you could shove toys under it and then roll it to get them back out, bang on the bottom shelf of it with blocks and drive your cars off the edge of it, I know now :)

This has certainly not been the Holy Week or Easter that we planned, but in it's own way it has been a blessing. Prior to the foot IV John was going for a couple walks a day around the hospital floor and then off through part of the med school and down this humongous two-part handicap ramp. He used to pick his feet up and fly down this thing, so I was worried when he turned the corner and decided that he wanted to go down it. He stopped at the top and I could see that he was plotting something, reached up for my hand and down he went, running as fast as he could get his little feet to go and using his arm/my hand for a brake. He finished at the bottom with a huge grin and turned around and walked back up it to go again. After the second time he was still grinning from ear to ear but was pooped and needed to walk back to his room.

Mark has been coming up each day and John is so excited to see him. Last night when I told John that I was going home he looked a little concerned but then I explained that daddy was sleeping in the chair and he was all excited. We'll find out today what the course of treatment is going to be. Since John was growing yeast in his blood culture as well as in the line itself it may need to be a little longer on IV's but we are trying, probably in vain, to get them to let us take him home and just bring him in each day for his infusion. After all if a peripheral IV is going to go bad it will do it just as quickly in hospital as at home. We'll see, but at any rate the little monkey is doing great and bringing smiles wherever he goes!

Thursday, March 20, 2008

Knocked Out

I got to stay with John until he was completely knocked out, and now am waiting, I hate waiting. John was admitted to the hospital in Columbia with a fever early this morning and it looks like another central line infection with an added touch of pneumonia. He's currently knocked out as they are removing the central line. The plans right now are that we will stay here through the weekend and then Monday head up to Omaha where John and I will be staying out-patient for a while. He is high enough on his feeds that he may, should, may, not need to have another central line placed, but he may, most likely, will need to stay in Omaha for a bit, a couple weeks to a month, to make sure that he is staying hydrated and doing well. I'm so amazed at how strong he is, even running a 103.5 degree fever he still needed to go for a walk down the hall, and did so without the seat. He's doing very well and as sad as I am that he has to go through such hard things, I am so proud of him that he goes through them and remains my smiling kind little boy. Not exactly the Maundy Thursday we were looking forward too, but we are so very thankful that our little boy is ever in Christ's hands, and so are we.

Monday, March 17, 2008

Bad Monkey Palm Sunday


Can you see which monkey misbehaved in church for Palm Sunday? The bad one ripped the clothes off the other one, threw the other monkey under the pew so that he could go get him and then decided to hold onto my hands and run in place. The bad monkey will be returning to church, albeit without the good monkey, the poor good monkey will be left at home. I'm sure that he'll have to be left with his sweater, socks and shoes on, he'll probably need a drink before we leave and maybe a book to read while we are gone, but home he will stay.

Friday, March 14, 2008

Second Tree on the Right

Today was John's first day to take his seat-less gait trainer outside for a walk. The weather was perfect and he did so very well. Mark and I were both impressed that he could negotiate the steps on the sidewalk without falling, and then he ran the few steps down the sloped part of the driveway into the street. He didn't make it across the front of our whole block, but he did make it to his favorite trees, the second tree to be exact and then he walked home too. It was cool to see his little bottom totting down the street with no seat for support. The weather is supposed to be yucky tomorrow, but on the very next nice day we'll let him loose again, then maybe he'll make it to the Third Tree on the Right!

Tuesday, March 11, 2008

New Things

John seems to be learning and doing new stuff everyday. I thought I'd share a few of them with you.

The first is Escape! John has now started to scoot on his bottom and roll over and if in his gait trainer just plain run away when he is being reeled in for meds or bedtime. He does this always with a big smile on his face and it's a game for both him and us, the other night he was headed to the front door when dad 'finally' caught him.


The second is a boxing issue. Since John's toys are on the floor in the living room lined up in boxes against the wall he has started finding new and entertaining ways to play with the toys and the boxes too. The past couple days he has been showing us well, this...


...followed by lots of giggles inside the box and this...


Lastly, it's a whole new walk. At physical therapy on Monday they turned John's gait trainer around so that the frame of it is behind him. This lets him get closer to some things and also stand up straighter when he doesn't have the seat under him. They told us that the more time he spends walking without the seat to rest upon the further along the road it gets him to walking without the gait trainer. So we decided that walking at home, at least in the house, will be done sans seat. He spent nearly a half hour in his gait trainer this morning, part of it walking, part of it standing and watching his favorite bear dance (Disney's animated Jungle Book, there's nothing like Baloo!) and the last bit kicking his Superman ball around. We were impressed and so was he!




On this day when we are hearing of another backpack boy that we know fighting to hang on to life we are spending some time in prayer for him and his family and enjoying the vigor that is John's lately. Life is too precious to not enjoy every moment and since I hear kicking, giggling, and heavy things falling in the living room I had better go and find out what destruction is being wrought!

Tuesday, March 4, 2008

Silly Meat or Just Plain Ham

It occurred to me as we were sitting in a truck stop waiting on our food and John and his daddy were sword fighting with the table knives that when some people gain weight they gain fat, I know these people, when some people gain weight it is rumored that they gain muscle, hmmmm okay maybe that's true for some, so how is that the weight that John has gained seems to all be silly meat? As I watched him dramatically clutch his chest with both hands, give out a loud 'aggggg' and lay backwards in his highchair because he had been stabbed yet again I couldn't help but notice that it wasn't just Mark and I that were rolling with laughter but that every table was watching the little showman perform. What a ham, and maybe that's what he's gaining, maybe it's all ham, a goodly portion of it certainly lies in that general vicinity.

John's appointments in Omaha went rather well. He stopped and gave five to the nice people who work at the surgery desk, we pass it on our way to the lab and as we go by they holler out 'John' and he smiles and goes and gives them five. He said thank you to the nice lab guy who gave him a Clifford sticker after he had to be stuck twice for blood. Then of course he put Clifford on ever surface that he could reach. He ran enthusiastically to the escalator and grinned all the way to the top. We searched in vain for a high chair in the cafeteria for lunch and then we decided to just sit him in a booth, hmmmm, he's now tall enough that it worked for him. He ran right through the swinging door at the front desk of the clinic and was in a good enough mood that when he got back to the blood pressure station his blood pressure was good, instead of the horrible pressures that he often has in Omaha.

He weighed in at 14.35 kilos, a little over 31 1/2 pounds and he is now 35 1/2 inches tall. During the appointment he had a great time playing in the floor, was decidingly unhelpful to dad who was trying to change his g-tube dressing and was very helpful to me when I was changing his central line dressing, sigh, I guess we can tell which one of us hauled off and spanked him over his uncooperative attitude earlier last week, somedays a mommies job is no fun. Mostly though this mommy had a wonderful time watching the little boy who was cheerful for the docs and excited to run out of the building and get back in the Jeep. This is the first time that we've driven home from Omaha without the sound of puking in the back seat, and a little boy is tucked in his bed and already snoring.

We missed getting to visit with the Baker's this time, but our next appointment is the Tuesday after Easter and so when we go up next time we'll actually have time to breath. Provided John stays healthy between now and then the docs are anticipating taking him completely off of TPN at our next visit and discussing when we will remove the central line, they are hoping before the end of April!

Sunday, March 2, 2008

Booty Scoot Amen

This infection and antibiotic schedule have upset John's system a little bit, but not enough to keep him from playing and being a full-blown silly boy. This morning in church he decided that he'd rather sit in the floor than in the pew, and then rolled his little truck over towards the little office that's off the side of the church. Before I could catch him he had booty scooted himself out of reach going after the truck. I thought about walking over and getting him, but decided that would be more disruptive to the prayers than letting him go, then I realized that each time Mark said 'Amen', John stopped scooting, folded his little hands and said 'Amen' too and then went on his booty scooting way. This child always brings me smiles! When he finally got to the truck he rolled it into the office, shoot I forgot to pick that up, oh well, I suppose I know where it will be Wednesday night.