All is Well!!!!!

Ayden did great today!I didn't get to go into the OR with him this time because of him having the broncospasims the last time,they didn't want to put him under with the Gas,without an IV in,So they gave him some Versed & once it kicked in he had a huge smile on his face & was starring off into space & laughing!He let me hand him right over to the nurse,usually hes kicking & screaming,so this made it much easier for all of us.His airway is PERFECT!!!Theres a bit of tracheal collapse still ,due to an artery from his heart compressing the trachea,but its not causing him any issues & it should go away with time & growth,even for him.His airway was reconstructed to a size of 4.5 & a month ago went down to a 4.0 & now its back to a 4.5...This is great!& everyone is impressed with the quality of his voice,some kids end up with soft whispery voices & Aydens is loud & clear,not bad for someone who once had a cleft palate & trach for 4 yrs!!His hearing has returned also!,his ears were full of fluid,so they drained them & put tubes in& even more good news,we don't have to come back until October,whooo!!!!!Were driving back in the morning & Ayden cant wait,he says "momma,I miss Ava",So well see you all soon!O,one more thing ,I got a script to get rid of ALL TRACH RELATED EQUIPMENT!!!!!!!What will I do with all the extra space....Hmmmmm..........................Love,Angie

Back in Cincinnati

Hi Everyone!Well were back here & tomorrow Ayden has a scope (ML&B) of his airway to see how the graft is healing & if there is any scar tissue forming,they will Lazor that off.They are also going to check his ear because his hearing has been terrible,& hes been complaining that his ear is "making noises",so hopefully theres just some fluid & they will drain & put tubes in.I will update after the surgery,but his breathing has been great, so I'm not really worried about that,just I hate whenever he has to go under anesthesia & now that theres no trach,So I don't know if they will be able to do an IV while hes already asleep.I guess Ill find out ,But on a happier note Aydens been eating by mouth like a little piggy!,Chicken nuggets,french fries,cereal,chips & today he even took his meds by mouth!!!!I'm so proud of him!!!!! Prayers & well wishes for an easy trip to the O R,...............................Love,Angie

Our first week home

Well it has been a crazy week!Ayden got his first boogery cold...never a dull moment,I cant wait until I can say my life is boring!The first two days were tough he has never had to deal with a stuffy nose before & coughing phlegm into his mouth,& when he first got boogers J & I were so excited!sounds crazy but when you have a trach everything gets suctioned out,so no boogers!Well,he did have a lot of anxiety & still does a bit butt I think hes figured out what to do to clear his chest now,so hes been better,it is still a battle to get him to do his nebulizer treatments,hes never had to do them with a face mask before,we even got a dragon faced one on Ebay & still no luck,just a lot of stress for a little boy to deal with.He handed me an old HME(trach filter)he found on the floor & I told him to throw it out along with some suction catheters & he was very excited to do so & I must say it felt good!Its weird not needing to suction him anymore & the best part is being able to give him a bath & not need Jay here to help me change his trach ties after!Giving your child a bath is something every mother can do alone,but never me....until now,it feels so great!We go back to Cincinnati in 3 weeks for another scope to see how the graft is healing,I cant believe its already behind us,it was by far the hardest thing I have ever done in my entire life & looking back is still emotionally exhausting,but seeing my smiling little boy makes it all worth it.....Life suddenly makes sense.........Love,Angie