A quick update on Tyler

[Guest guest]

Hi everyone...

I know it has been ages since I wrote to everyone here...

It has been a very trying yr personally and have just not had it in me to

write...I thought of actually stopping with the group but couldn't bring myself

to do that either...I would try every once in awhile to join in..but as you can

see that just didn't work either...

For all the newbies...I am one of the Oldies..been here almost from the

beginning..The reason I joined was for my son Tyler, who has a combination of

auto-immune diseases. He has been rather stable for awhile andnot the reason

for me not being here lately...

We are now about to be thrown into something new for him and us...He has had a

hernia for the last yr ...and it is now out of control and he is going in for

surgery tomorrow...YIKES...I am really quite nervous about this....for those who

remember Ty he has had a history of going into anaphylactic shock with some of

his meds and he will hve to be getting platelets before surgery...His are in the

40's right now... and I am worried about him having a reaction to them...and of

course there is the anesthia that is worrisome...It will be his (future)tx

doctor who will be doing the surgery and that is one thing that I am pleased

with...although that also means that he has to have such a specialist to do this

surgery...she feels that the hernia is quite large and that his lovely out of

control spleen is in the way...causeing some more complications...we were also

told that having surgery may cause his liver diseases...PSC and AIH to

excellerate...more good news right...

Im sorry that I have not been here for everyone ...(although I am not sure how

much help I would have been in this past yr) but I do know that when I need help

and comfort and people who will really know what I am feeling this is where I

need to be....

soooo here I am....

We are not sure of the time of surgery tomorrow yet...but I will try to get to a

computer as soon as possible when we know some info....

Also another thing to add to all of this....Ty is not in CHOP anymore....or with

his wonderful doctors that we grew sooo comfortable with after more than 20 yrs

there...He is at the adult hosp next door...HUP...we like his doctors but just

have not been with them long enough to have that feeling we did with his CHOP

docs...especially his GI doc...

Please pray for him tomorrow...

I'm sorry but I am a mess over this....

Ty is handling this just like he handles everything else...with humor...

thanks for listening...

luanne Ty's mom