Re: Ty's Remicade

[Guest guest]

Dear Luanne, I feel really out of the loop. What's going on? Terry didn't re-subscribe to the group until this week and the first time I get a chance to catch up with you all I find all sorts of things happening that I know nothing about!. Life is just starting to get back to "normal" here (whatever that is!!) I was so sorry to read your e-mail. You certainly sound as if you've been through the wringer. I do hope Ty is feeling better and you too! Terry is out pressure washing the deck at the moment. Can't stand up without moving around for too long, so it's taking rather a long time, but he's determined to do it. He certainly couldn't have managed it a month ago, he's definitely on the mend. Hope to hear good news about Ty soon. Love (Terry's wife) Tx April 02.

Ty's Remicade

Hi to everyone... I want to thank everyone for the prayers for Tyler....these infusions have become more and more difficult and stressful....and yesterday was no better.... Unfortunately it was a very tough and long day...We left here at 5am and got there at 7am...His doctor was there when we got there and we discussed some things and he and Ty goofed with each other as usual.....Then they take weight and vitals and get him set up for the day....Then he gets his IV, has labs taken..Doc wanted a special lab taken...can't remember the name...something like a HACK...will tell if he is building anti-biodies against the Remicade... and gets all the pretreatment....then finally he can get started getting the infusion of Remicade...rate starts at 10mgs per hour and then increases....usually up to 250 per hr....but Ty never gets that far...Last time he had trouble at 60....So this time they are only taking him to 40....so it means that this will be a very long day.....no problem....as long as he can get it.... 2 other girls come in and get set up for Remicade...just strainght infusions....so they will only be there about 2 1/2 hours.... Ty is sleeping and I am talking to one of the moms....when he wakes up and clears his throat...a first sign for him....oh course I am always watching him like a hawk...so ask him if he is alright...he says "Ithink so" and clears his throat again...and then he says no....I call nurse and with that he is bright red...can't breathe....eyes are red and tearing...and is now purple....it all happens that fast....they stop everything and put him back on O2...his heart rate is sky high....and doctors and nurses are all at our side...working on him....Very Scary....He had only been at the 40 rate for 30min....only received 27 mgs of Remicade...it is only 10:30 am....the docs all decide to let him rest for an hour and then start it again...at 10 and only go to 20.....Ty wants to try knowing that with out the Remicade he really starts to fall apart quickly...been there and done that.....so he rests....his head is pounding and he aches all over.....his color comes back...and his eyes are white again....I can't exp lain well enough how hard this is to watch him go thru this.... When they listened to his lungs they said that he was not moving much air....This was a really bad one....hit him very very fast..... Of course the other families are now wondering what is going on....the doc explains that people can react to the infusion BUT that with all the infusions they do that Ty is the worst...and no one even comes close....Great.....they are reasurred but I am not.....Now my head is pounding....The docs keep close watch on him...keep listening to his lungs and asking him how he is.... Finally they decide to start again...and if any problems come up at all he is to be stopped and that will be the end of Remicade for him.... also if he can successfully get the rest of the infusion they will do another HACK test...to see if his wild immune system is now also fighting the Remicade...making him react....Geez ...you would think that with taking cyclosporine and getting a medrol pack and then a gram of solumedrol(1000 mg) that his immune system should not have the strength to attack like this..... Well the rest of the day was unevenful...he was moved to the GI floor in the Hosp...and put on heart monitors and other things...and was able to get the rest of the infusion....got more Benadryl...one of the pretreatments...during the infusion....and then got the blood test at the end....we were ready to leave at 11:30pm....and got home at amost 2....I was so tired...did a lot of staring at him all day...poor kid...I know he feels like a freak.....sees these young girls come in and get this without any trouble.... Needless to say I am in worse shape than him today....he did some sleeping there and wanted to drive home but I was afraid with all that in him....so I drove.... I am exhausted....mentally and physically....but I think more mentally at this point.... So not really sure where we go from here....alot of talking to be done...I know Ty wants to get them....but I worry about how many times his body can go into shock like this..... Well this is way too long....but needed to talk to someone.....who understands .... thanks for being here and I will try to get to reading some emails later....when I can keep my eyes open....I think I just need to get myself into something else and get my head away from this for a day or so.... take care and talk soon Luanne Ty's mom