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!

Photo Sharing and Video Hosting at Photobucket

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.

Photo Sharing and Video Hosting at Photobucket

No comments: