Resting in the ICU

Well the surgery went great,his brain activity during was great & they ended up needing too take cartilage from two ribs because hes so tiny.Right now they are trying too figure out vent settings,how many breaths per min. to give him because his Co2 levels are off.He woke up for about three min.,moved his arms & legs he really didn't know what was going on though,so they gave him some morphine until his cocktail of pain meds,anesthetics,& paralytics kicked in.Ahhh!!! As I was typing his vent wasnt working properly & they had too bag him,Ahhhhh! Hes fine though,it was a long three min.! Thank you for "being here" with us today Love,Angie & Jay

Graft is out

They just got done with the rib graft &closed & has a drain in & now they are putting it into his airway........................Angie

In surgery

Hes in the OR now,They have done the scope of his airway & opened his neck up & are now harvesting the rib graft.He did cry a bit this morning & said he didn't want to have surgery today,but having everyone with us made it easier for him.They did decide to do the spinal cord monitoring after all,he will still be flat for most of it ,but they felt even for the short intervals of hyper extension it would be too risky to do it with out monitoring.He has been hyper extended many times before without complication,but they feel we were just lucky every time.Thank God for this hospital,if it wasn't for them,we wouldn't even know how fragile his spine is,we wouldn't be doing this surgery & he would still be retching,& he definitely wouldn't be the little boy he is today if we stayed in Buffalo.The retching was his biggest battle & now were at the beginning of his next battle.He calmed down before surgery watching Tom & Jerry,he was cracking up,he cant seem to watch that without laughing!Jay & I were able to be with him in the induction room,connected to the OR & he did great in there.The anesthesiologist asked him to sing & He wanted to sing Rascale Flatts,I did most off the singing though because I was holding the gas & he was drifting off too sleep..................................................................................................................Love,Angie

Surgery tomorrow

Well,we made it .....No sickness & his vocal cords are completely normal & hes protecting his airway when he eats & drinks.We check into the hospital at 6:00 & his surgery is at 7:30.They are not going to do the spinal monitoring,they decided it would be better for him to remain flat for the procedure & only hyper extend him when absolutely necessary.I cant believe its already tomorrow,I just feel numb.If this surgery was possible 3 years ago it would have been easier because we WANTED the trach out so bad then,we still do now but after almost 5 years of life with a trach,Its just become a normal part of Ayden.Were going ahead with the LTP because I'm so afraid to send him too school with a trach,worrying that other kids would pull it out,or Ava for that matter in a blink of an eye.I want so badly for him to be able to play with the other kids on our street,without me constantly hovering over him,& to not have too run for cover every time a kid at the park starts coughing & sneezing.My only hope is that no matter what happens,whether it works or not,I get him back just the way he is.He knows about the surgery & is excited for his trachy too come out & in his words"then I can go swimming!"He said he wanted too bring "Jerry the mouse & Ava`s doll".Thank you everyone again for your support we really need it right now.I will update throughout the surgery,thank you for being with us.....................Love,Angie

Vocal cord testing

Aydens next test to pass, is to make shure his vocal cords are moving properly & that hes protecting his airway when he eats & drinks.They will put a camera down his nose & into his mouth to look from above to see that when he breathes his vocal cords are moving normally.If they are not it would block off his airway without the trach in.They will also feed him something & have him drink & see where it goes,hopefully all down his esophagus,nothing into his airway.He absolutely hates when they put things in his nose,so hes probably going to freak,but one year ago he did it with out crying,so hopefully it will be the same outcome. Today he was watching Ava on the couch for me for a second & he told her "be careful,so you don't fall off & bump your head & we have too call an ambulance & then you get a present".It was so funny!,I couldnt believie he said that,I guess he asociates ambulances with presents! He had a great time at his party,he asked me today what my favorite part was & he said his was"opening my present & I was so excited seeing what it is",huge cheese smile!!! My precious little munchkin! .Love,Angie

The surgery..........

Well,were leaving tonight for cincinnati & the LTP is on friday.Ayden is very excitied because were going to have an Ayden party!,kinda like a birthday party with a transformers theme,anyone that knows him knows hes just the kid to have a birthday party twice!!!!!!! He didnt pick out a lot of his toys to bring this time around because he said hes getting more at his Ayden party!My mother & grandma & papa are comming with us,not only to support us but also they need to be with Ayden & he needs them.Ava is also comming because Ayden missed her so much last time & I dont want him missing her right before surgery,as well as Jay & myself.I know that once we leave him in the O R her smiling face will be just what we need to get through it. THE SURGERY:For those that do not know what the surgery is,I will try to explain a bit.The area of his trachea,just above & below where the trach is,is very floppy & if you take the trach out it collapses & he cant breath,so they are going to take cartalidge from his ribs & graft it into his trachea.He will be on a vent after & completely sedated for 7 to 10 days.After that he will go back into the O R & if his body is accepting the "new airway" they will take him off the vent & see if he can breath on his own.If he can ,he will stay in the ICU for only a few more days & then go to the airway floor for about two weeks & each week he will go back into the O R a total of 3 or 4 times before he can go home..........................This is what the "book" says should happen,but every child writes thier own book. I will update throughout the surgery & thank you to everyone who helped get us here.Keep all the prayers & well wishes coming,we need them & we will miss all of you!!!!!!!!!!! & cousin Evan Ayden cant wait to play with you!!!!!! Love ,Angie

Back from Cincinnati

Well we went for Aydens pre-op stuff before the LTP on fri. & everything went great!He had a c-t of his spine & they tried it w/o sedation & he actually did it!,stayed perfectly still! I was so proud of him! Then we saw nerosurgery found out his c-spine isnt "normal" c-1 & c-2 are not calcified & his spinal cord bones are flatt & narrow & the tonsil of his brain is lower than ours.What all this means is he cannot be in situations that can cause his head to tip too far forwards or backwards & we need to do yearly MRIs to make sure his brain stem doesnt slip further down.So for the LTP he wants to do spinal cord monitoring,so that during the surgery if hes ever in a compramising position,they will know & can change it.Im soooo relieved they can do this,my biggest fear was that his brain stem would be damaged during the LTP & now that fear has dropped in half,thank God! Ayden is so happy to be with his sister now,he must have said 10 x a day"I miss sissy!"& hes already squished her cheeks & said "hello,my name is chubby!" & Ava is happy to have her brother back,she keeps smileing at him & trying to go where ever he goes,its so cute! So the next step is to go back to Cincy on mon. & have his vocal cords checked to make sure there moving properly & after that everything should be a go for the LTP on Fri,I cant believe its so soon! So please think of Ayden at this time & send us prayers & well wishes............Angie
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