Great News!!!!!!!!!!!!!!!!!

Today had ML&B(scope) in the OR. Everything went and looks fantastic. But the best news was when they told us we get to go home. BE BACK ON MONDAY!!!!!!!!!!!!! See you all soon.

Another Day of Just Having Fun !!!!!!!!

OR tomorrow

Ayden goes back to the OR tomorrow at 11:30 to see how his new airway looks & to remove any scar tissue,possibly dilate & too see if the vocal cord swelling went down & we will be able too see exactly how floppy the back wall is.I'm a bit worried because of the broncospasims last time,but anesthesia is aware of this & are going to use a anesthetic that will put him in a deep sleep,so hopefully it wont happen again.If all goes well we will be released to the hotel for a week & back to the OR we go,and so on........Keep Ayden in your thoughts tomorrow & pray for an easy day,again Thank you everyone.......Love,Angie

Today Was All About Fun !!!!!!!!!!!!!!

New Pics!!!!!!!!!!!!!!!!!!!

Ayden update

Well,last night we got kicked out of the ICU!!!!!They had a rush of kids coming up,so we got to leave early!ICU felt he was ready,but ENT wasn't so sure.This morning ENT came by to talk to us & said they never expected him to do this good,because of him still having the tracheomalacia & they are very happy & surprised! When they pulled the ET tube Friday they prepared us for the worst,they had all the drugs they needed right next to him to sedate & paralyze him if they needed to reintubate.I prepared myself to watch my son turn shades of purple,blue & gray & instead he was beautiful shades of red,white & pink! I was holding my breath the entire time & as soon as he was pink & huge sigh of relief came over me.......My miracle!!!..................................Yesterday for the first time ever he was blowing bubbles & party blowers,hes so proud of himself that he can finally do this,he tried so hard with his trach but could never get enough air out of his mouth.When Ayden fell asleep last night Jay & I kept hearing little noises & every time we looked at him he was sound asleep,then we realized these are noises he makes in his sleep!,just like our Ava,It brought tears to our eyes........Finally!!!,......Love,Angie

The First Time On My Own

Well, yesterday they took the ET tube out of my nose and gave me some oxygen support for about 6 1/2 or 7 hrs. Then the nurse came in my room and said that I was ready to take off the O2 and daddy said ,"WAIT, are you sure we not rushing him". I just look at him and said, "Chill out dad, I got this". For the first time, I've been breathing on my own, ALL ME. I'm still getting used to my new airway, but for the most part I'm doing great. Daddy says that he feels like that father in the stands screaming, THAT'S MY SON, THATS MY SON. I also want to thank everyone for their thoughts and prayers,they are huge. Ayden

Chill'n with Daddy

Mommy and her big boy!!!!!!!!!!!!!!!!

Our Little Tough Guy

3 hrs. later

Tube is out!!!!

Hes on a high flow nasal cannula,which is a lot of oxygen with a flow behind it & so far hes doing great!He gets scared when he coughs,because for the first time ever hes coughing into his mouth!He sounds SOOO different ,but once the swelling goes away then we will have his true voice.They had to check his blood levels & he said to the nurse "go away you mean lady".....So far that's all he said & "Go away!"I will post pics in a bit.............Love,Angie

Midnight update

Today was an extremely emotional day for all of us,of course daddy & papa were a bit stronger than mommy & grandma....But we needed them to be.I did get some sleep ,so I will be usefull to my son tomorrow.Processing all of today's events were....I'm not shure I can think of a word other than really,really hard.After Ayden was settled back in his room today ,Anesthesia came to talk to us about what happened in the OR.During the scope he had a broncospasim & desatted down to 10,which for those of you that do not know what that means is his airway clamped down & the oxygen level in his body should be 100,but dipped to 10,he did however come right back up once they used a different anesthetic.The word broncospasim just sends chills down my spine & I never want to hear it again.When Ayden was a baby for the first 1 1/2 yrs he turned blue & we had to bag him just about every other day because of his broncomalacia,when that cleared up broncospasims only happend when he was sick,but never so bad where we had to bag him in almost 2yrs now.Then after hearing that his ET tube wasnt in secure so they had to sedate & paralyze him & he ended up paralyzed before anesthetic took place,so it looked like he was sleeping,but he wasn't yet.I must say I lost it at that point & Daddy was a rockstar for Ayden,I had to leave him,so Jay had to bottle up what ever he was feeling to be there for Ayden,& grandma & papa were there to help me keep my sanity.Its now 1:00 am & Ayden is doing good,after all this hes in better shape than me.......He is so incredibly strong,please pray his day tomorrow is an easy one & he really is OK.....Love,Angie

Pulling the ET tube at 7:30 am

Fingers crossed....................Love,Angie & Jay

Back from the OR

The graft looks perfect,but the back wall of his trachea is floppy.They reconstructed the front wall & they never knew the back was floppy to.His vocal cords are also swollen from the ET tube.They put a smaller ET tube in & started steroids for the swelling.The plan is to extubate tomorrow & over the next 48 hrs will tell us if its going to work or not,they have no idea.The hope was that his airway would be stiff & round,but its not,its oval a still a bit floppy.They think its because of the dwarfism,the type he has makes all the cartilage in his body softer than everyone Else's.They said hes not your average kid & his battle will be bigger & harder.We were told not to be surprised if tomorrow he gets into distress & cant breathe,they will try everything possible to not have to reintubate.My poor boy still has soooo far to go..................Angie

Big Day Tomorrow!

He is going into the OR at 8:30 to see if the cartilage is becoming a new part of his airway & if all looks good they will put a smaller ET tube in & extubate at the bedside on Friday.....Today I think Ayden was a bit fed up with everything & I felt like his "spirit" wasn't here anymore,its kinda hard to explain.....just like he wasnt trying to be happy & just dealing with what hes been dealt.They went down to only 1 mg of fentanyl,because of how well hes doing & he shakes his head no,when asked if anything hurts.The ENT nurse did explain that he is doing exceptionally well being awake during this & my concerns about his "spirit" are not so worrysome because its normal for him to feel this way considering we've taken away all of his coping mechanisms,not being able to turn over to get comfortable,not being able to play with toys & every time he wakes up hes doing the same old boring thing & theres nothing he can do about it.Grandma & Papa came & we went back to the hotel for a bit & by the time we got back he was back to Ayden.Him & Papa had hand signals worked out & he was giving grandma the look(a look he does to make us laugh).So fingers crossed for tomorrow.......Till then,Love Angie

Aydens Day

Early this morning Ayden was getting very irritated & upset with the nurses messing with his IVs & sticking him for a blood levels & he kept asking me for water & it absolutely broke my heart to tell him no & by his third attempt to get water he started crying,hes been very,very strong.I'm happy hes awake ,but it kills me that hes going to remember this week forever.His pain is being managed,so hes not in pain,just uncomfortable & sick of everyone messing with him.Jay & I were extremely tired today ,Ayden has no sense of day or night right now,so we stay up with him so hes never alone ,Hes doing extremely well,but seeing him like this everyday is hard.Jays parents came today so we could go back to the hotel for some sleep,THANK GOD for them I felt like I was going to collapse this morning & crying over everything,not just for Ayden but for another baby,who's parents I meet during our stay here.Her name is Jessica & she had tubes in her ears placed & had a brain bleed after,so please everyone save some prayers for baby Jessica & her Family,they need them.I'm so thankful for my daughter I couldn't even imagine anything happening to her during something so routine.So I'm sad for my Ayden & Jessica & I don't even know her,I just saw a picture of this beautiful baby girl & she melted my heart.Thank You Mom & Dad for taking care of Ava,I miss her so much,but I know she is happy with you guys.Thank you everyone once again for the support,your messages cheer us up & keep the prayers & well wishes coming...........Love,Angie

An Exception to the rules!!!!!

So its 1:30 am & I cant sleep & I was just talking to Aydens night nurse & she has been here for 12 yrs & said she has taken care of hundreds of LTP patients & Ayden is "an exception to all the rules".She" said 9 out of 10,no wait...9.7,of all LTP patients need to be on 4 or 5 drips of pain meds,anesthetics & paralytic drugs & throughout one 12 hr shift they are constantly in the rooms upping the level of sedation & holding the kids down,until they figure out the daily cocktail of meds they need",Shes said shes never seen an LTP kid be awake & aware before,not to mention watching TV,& shaking his head yes or no to all questions asked!Ayden is only on a extremely low dose of fentanol & he hasn't needed an anxiety drug or morphine in about a day now.I mean I knew he was doing extremely well I just didn't realize how much sedation other kids were on.I know its partly because we prepared him on what to expect & he saw pics of Parker & Collin as I had mentioned before,but I never knew he would do this well......I'm so proud of him & I fully plan on spoiling him as soon as he gets to a toy store!So its not going to be my kid throwing a tantrum in the toy store anytime soon! Thank you everyone for sticking it out with us .I cant wait to get that tube out,I know its hard for him to stay this strong & he is in pain & scared,but hes got such a strong will its pulling him through the days!............Love,Angie

Aydens new scar

Today Ayden was pointing to the tube in his nose,so I asked him if he wanted to see a mirror & he shook his head yes & when he looked at himself he kept lifting his chin & I told him"Dr.Cotton fixed your neck"& he gave me a smile..........I didnt "catch" the smile on camera,so his sister smiled for him!.......Love Angie

My Smiley Princess!

Mid day update

They pulled the drains out of his neck & chest & his catheter out & he handled it pretty good ,almost had to bag him but we told him "just breath",grandmas calming mechanism & he did & brought his SATs up on his own.Fevers gone,& this morning they said they could hear an air leak around the tube,this is good it means the swelling is going down.So the plan is to go to the OR on thursday & downsize the ET tube & extebate the next day.If his airway looks really good the might be able to pull the ET tube in the OR,we`ll see.........Love,Angie

Grandma & me!

Staying Strong

Today hes been annoyed with the vent,so they turned the rate off & hes now initiating all of his own breaths,the vent is just giving him a bigger deeper breath.He is much more comfortable now.He is only on a fentanol drip & his fever has been down all day,he hasn't had morphine in about 10 hours now & tylenol in about 5 hrs,this is excellent!He has been much more aware today,hes able to shake his head yes or no for things & for if he has a Boo,Boo or needs a suction,or if he wants his glasses on or not.He had a couple episodes of DeSatting only into the 70s-80s range because he had a mucus plug,so they gave some saline & bagged him a bit & he went right back to sleep.Everyone is amazed at how well hes doing,my precious little peanut!.........My Mom,Ava,Tracy & Scott went home today & on there drive back they stopped for a bite to eat & when they got back into the car they heard on the radio a tornado had touched down in the town they would have been driving through,Ahhhhhhh!They are now home safe.....Jay & I went back to the hotel for a bit today & his parents stayed with Ayden they listened to his music & read some books.I felt like I was ready to collapse,with having Ava here I wanted to spend as much time with her as possible before she left,so needless to say I was tired!!,We both were,Thank God for Grandparents! .............Love,Angie

My real live superhero!

Happy Mothers Day!Ayden has shocked me yet again with his super strength!It amazes me how one little boy is stronger than almost everyone I have ever known.He and all of his trach friends from the tracheotomy.com boards have been an inspiration to me,the toughest kids I have ever known.I got my Mothers Day wish.......Ayden being able to be awake with just some hard core pain meds,I couldn't imagine not being able to look in his eyes for 10 days,His now trach-free friends Parker & Collin who had this surgery a few weeks ago prepared Ayden for this surgery.There moms posted post -op pictures of there boys & because of that I was able to show Ayden the tubes in there nose,the arm restraints,the IVs,& all the wires & I explained why he needed all that stuff too.So when the docs asked me if Ayden would freak out if he woke up,I told them how I had explained everything to him & that as long as his pain was managed I knew he could do it.Thank you Parker , Collin & Ayden for giving me my wish!..................................................Ayden had a good night his fever is holding at 100,so this is a very good sign that its probably just a post-op fever.He only had one scary episode of desatting when he was suctioned past his E-T tube, after that I had them make a sign so it wouldn't happen again!When people see Ayden they have no idea how smart he is,to them hes a baby,but now they know he can be told too cough,so they don't need to stimulate it with deep suctioning.He has had the same RT since Friday & he really likes her,so he doesn't mind when she suctions him........................................................My Mom & Aydens Grandma,Papa,Aunt TT & uncle Scott are here & have been a huge help!Ava is also here thanks to all of them......We love you all!!!!....Love,Angie

Uncle Scott's Post

I just came back into Ayden's room and the nurses were turning him over. Classic Ayden, used his spidey-web to try to stop them. . . Love it!!

Here's a picture of him holding his Spiderman Balloon. He made me show him all the pictures of him that were on the digital camera.

Back on

He lasted 45 min. off the vent,but hes not ready.The Tylenol is not holding the fever anymore & they cant give Motrin because it will thin his blood & cause him to bleed,so they are drawing blood & urine cultures to check for infection.Hes in a lot of pain so they are starting is pain drip back up.I want off this roller coaster.................Angie

Breathing on his own!

He still has the vent in,but hes taking all his breathes himself,with some oxygen,this is good!Right now they are trying to see if he can handle being awake,still on morphine & other pain meds,but they've taken away the anesthetics & paralytics.If he can do this, his recovery will be much easier & he wont have to go through so much withdrawals.He is still running a fever,so his heart rate is a bit high so hopefully he will keep responding to Tylenol.So everyone send us some good vibes..............................Love Angie

My tough guy!

Aydens night

Well ,his night went pretty well but he does have a fever right now,probably just a post op fever & he is on weak antibiotics,so If it continues beyond 3 days then they will bump it up.He is needing morphine every 3 1/2 hours or so,he wakes up a little & starts coughing & they are still suctioning some blood out & he gets pretty uncomfortable so the extra morphine on top of the cocktail drip is very helpful.He is responding to our voice,so even though he does not know what is going on he can her us & calms when we put his "DD" in his hand(his blanket).Ent came by this morning & I got a peak at his "naked neck",I could barely see the incision & for the first time ever Ayden is sleeping with his chin touching his chest!,No more stupid HME scratching his chin up.The rib incision is about the whole front of one side of his chest,but I love his new scares!Today so far has been a bit harder than yesterday,I'm happy he knows I'm here but I hate hearing the vent & seeing his chest rise every time I hear that noise & I know its only temporary but Its hard seeing a machine breath for him.So the plan is to keep him comfortable & tomorrow they will take the drain in his chest out & on Monday the drain in his neck will come out & hopefully by Tues. or wed. he will go back into the OR to see how the graft is coming along.As always all your support,prayers,& well wishes are really helping us through,(other than the occasional tear jerker replies!,Ha,Ha) Talk too you all soon....................Love,Angie

A Father's Thoughts

I'm not one who shows or talks about their emotions, but I must say that before Ayden's surgery, I was scared(scared-shitless). Its just that I knew this day was coming, and no matter how much you think you prepare yourself, it's never enough. All the tubes and monitor sounds, its just like the NICU four and a half years ago. Wow 4 1/2 yrs ago. Now that the surgery is over and went fantastic, I feel so good knowing my little man knocked another one out of the park."Thats my boy".

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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