Monday, April 27, 2009

Keeping Busy...

-2-1

We have been one busy family -- and that's a very good thing.  This weekend I had a great photo session in the morning and later in the afternoon we took the kids on a hike on the horseshoe trail -- as far as Gavin's wheels could go until the terrain got a bit to rough! Then on Sunday  we were able to take part in the Sesame Place Challenge, sponsored by the Variety Club, giving families with children with special needs a free day at the park.  Despite the heat we had lots of fun!  Gavin didn't do so hot in the heat as he does not regulate his temp very well, but we managed to get a few smiles out of him.

-2 

Gavin has been having a tough past few days.  Today he has been running a fever, which we still are trying to determine if it is hyperthermia or true fever.  Also, despite getting blood last week his counts are again very low and we will be heading down to duPont on Thursday for a transfusion.  The other issue we are having is with little fingers that pick off his ostomy bag at night!  Other mom's with ostomy experience -- what the heck do we do?  We tried all the basic stuff and nothing has worked.  On top of daily blood and gastric juice baths we are also having major issues with tangling at night.  Although Gavin does not crawl or walk he does roll back and forth -- over and over again!  He gets himself so tangled we are afraid that one of his lines will snap.  To give you a better idea Gavin has the following lines attached to him at night:

Ostomy bag.

Ostomy drain tube.

Apena monitor complete with two cables.

TPN line.

Omegaven line.

G-tube hooked to suction tubing.

Urine Cath, which is kept in overnight.

That a total of eight lines that get into a complete rats nest.  


What do other parents do?  



11 comments:

kate said...

I'm so sorry that Gavin took a turn...I would NOT be surprised if it was from this dreadful heat. Our Gavin really suffers, too, when it's hot.
I was SO happy to see you guys (and meet Adam finally!) at Sesame Place. We didn't last much longer after seeing you...but you made the trip worth it that day :-)
xo

Shari said...

I wish I knew what to do. I continue to pray and think of your family daily.

The Rowe Family said...

How wonderful to see the beautiful pictures, been thinking of you guys. Saying a prayer that Gavin starts feeling better. Emily

Courey said...

my kid sleeps with at least 5 lines and seems to like being all in a tangle... http://i49.photobucket.com/albums/f265/MotherWhimsey/sleeping1.jpg
but for a while it was an issue cause everything would start beeping at once and so I made a tube holder...
you put the lines in
http://i49.photobucket.com/albums/f265/MotherWhimsey/informative%20pictures/P3080003.jpg
and then tie it up...
http://i49.photobucket.com/albums/f265/MotherWhimsey/informative%20pictures/P3080006.jpg
that way you're only dealing with one thick line. It's kind of a pain in the butt to get it all in and out, but if we're having issues with it, I still bust it out.
hope that helps,
Courey

Courey said...

oh and sorry to go all link crazy on you, but for the heat we have to use one of these when we go out (but we can't stay out in heat, just go to and from places), but man it makes a huge difference.
http://www.coolvest.com/RPCM_Cooling_Vest/RPCM_Childrens_Cool_Vest.aspx
The silver eagle vest (the one that uses evaporation to cool) didn't work for us (but does for a lot of kids) and it isn't so bulky, but this one has been the best at keeping heat stroke at bay.

Faith said...

I was going to suggest a line cover too. I use one for my own sanity... I actually don't use it at night right now because Faith doesn't move around. But it works great for my purpose (to keep myself from snagging tubes on doorknobs and things) and when Faith does start moving around (or if/when she starts teething on her tubes more) I'll use it more.

Faith said...

Oh, and I don't know anything about ostomies, but could you do a cover like I use over Faith's g-tube over it to keep his fingers away? It's just a piece of t-shirt type fabric with velcro on the ends, I wrap it around and cover her g-tube with it and then velcro it in place. Works great for us, especially since she has recently discovered her tube and thinks it's a teething toy...
http://faiths-place-08.blogspot.com/2009/03/cutest-baby-in-world.html

JayCee said...

I can't imagine having all those tubes.....don't have any advice but we are praying for Gavin and for you all!

Sitesx6 said...

I'm an RN and when we have patients who pull at tubes we put a velcro type abdominal wrap- binder around them at night..the velcro HOLDS and is hard to get off. Maybe your Dr. could tell you where to find one?

Would an ACE wrap work??

Hope that helps!!!!!
Kelly

Anonymous said...

When my son was on TPN and G-tube feeds and would pull at pick at his dressing as well as get all tangled up at night we used something called a Tucker Sling. It's really hard to explain but if you would like to talk to me about it, please e-mail me your phone number at mommytoabi@hotmail.com and I will call you and explain how it worked for us. It was a lifesaver and they used them in the children's hospital too. It worked perfect. -Angi-

Becca said...

I'm not a parent but a Person Who Has Tubes (just g-tube and suprapubic catheter at present) and I've just recently started using a product called a g-strap - they also seem to be called a Comfasure - which is designed to tether tubes to an upper arm or leg to reduce the risk of it getting pulled accidentally - of course, it also tidies it out the way very nicely, which is nifty.

Might be worth giving them a try, or improvising your own at home?

Also - GO FOR THAT POWERCHAIR. Seriously, you'll see Gavin's development skyrocket when he's independantly mobile. There are downsides - cost, space, transport - but it's all eclipsed by how much it will improve his quality of life by opening up his access to the world. I've been a powerchair user for about three years now and it's hell when I have to go back into my manual 'chair (which I can't propel myself, not enough hand and arm function).