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!
The Food Adventure Continues - I started this blog when we started changing the way we eat. Finding out we needed to be gluten free, actually for me wheat free, was a huge big deal. Late...