Forgot about this

Almost forgot about this. Well, here I am. It's been a long time, wow, a really long time. We've probably had about 6 hospitalizations since the last blog. Christopher is more bionic now. He now has a port. This helps to lessen the trauma of hospitalizations and blood draws. I can't tell you how grateful I am for these odd devices my son lives with. The g-tube has increased his weight from the 5th percentile to the 80th ish percentile for weight. He still struggles with eating, and I've pretty much let that go. He will eat by mouth when he wants to eat by mouth. I'm more concerned with his spiritual, mental and emotional well being than I am with his ability or inability to eat a taco. He is now serving in the Altar at Church. This is huge. He tends to make little balls with the wax and stares at the flame in the candle, but he loves doing it! There are times when he's fallen asleep in the altar. What a wonderful, peaceful place for him. If people think this is not ok, so be it. My son is at peace in the heart of the Church and if he feels safe enough to fall asleep there, then nap away Christopher! 

Still here.

We're still here.  We tried to give him pedialyte and a little formula this morning and he threw it all up and more!  So...now we will start TPN tonight.  The docs want to continue to try and use his tummy so we're doing 5ml/hour with a pump.  The doc thinks it's psychological.  She's smoking crack! We go through this thing where the docs don't listen often.  So, we'll try the pedialyte and if he holds it down great.  If not maybe the doc will listen next time.

Here's the crazy thing.  This morning when I started the pedialyte I knew it wasn't going to work so I asked the nurse to go ahead and ask that the TPN be made.  I told her if he ends up holding it down great we just won't use the TPN.  Then she told me that won't work.  Bottom line is that it was about the money to make the TPN.  If it isn't made by 1pm then it won't happen til tomorrow and he wouldn't get it until tomorrow night.  I wanted it made just in case and that wouldn't work for them because it would be wasteful.   I about went through the roof.  It was almost like if I wanted my son to get the TPN tonight instead of tomorrow night he had to throw up, so we couldn't take our time to see if he would hold things down, it had to be done quick so there would be time to order it.
Anyway none of it worked so he'll start TPN tonight.  Good thing he threw up before 1pm..grrrrrrrrrr

The ENT also came in and we discussed his sinuses and that there was some sort of infection.  The WBC did go down but I convinced the ENT to check his WBC again to make sure it stayed down.  If it is back up we may do another CT of his sinuses to see if the infection is there.  We got to use the port for the blood draw!  Awesome, no pokes.  He looks like a pin cushion all ready!
He's sleeping soundly now...he needs it...

My feeble attempt at blogging

Maybe the first thing I should do is explain the name Rattletrap.  Rattletrap was the name of my long lost 1966 21-window VW Deluxe Microbus.  This was my second bus, and my 4th VW.  I loved this thing.  In fact it is tattooed on my ankle.  Front of the bus on the outside of the ankle and back on the inside.  Rattletrap got it's name pretty simply, it rattled.  The other point of the name is that with Volkswagens you often times have to just wing it when trying to fix them.  Seriously, you could fix a volkswagen with zip ties and chewing gum wrappers.  It seems kind of McGyverish and was a little scary at times.  However, it always seem to inch us a long a little further.  Ok, no this blog will not be about volkswagens, but there may be a reference every now and then cause that's how I roll.  The blog will mainly be about our life and our walk with our own little rattletrap Christopher.  Christopher has several diagnoses.  Cystic Fibrosis, Aspergers, Cyclic Vomiting, ADHD, GERD, Eating disorder, sensory integration disorder, and what ever else they decide to add to the list.  Because of all these diagnoses we sort of have to piece things together to figure out what is related to what and how to treat it.  I'm not into the doctors approach about which came first the chicken or the egg as it relates to Christopher.  We've been told by top specialists in the country that they have no idea why he does what he does and he is not in their book!  We think you need to take more of a wholistic approach when caring for him, and we're starting to finally convince the doctors of this.      Anyway, here we are in blogland.  Hope you want to be a part of our mcgyver experience with our little rattletrap Christopher.