Where does the time go?!?!?!?

My little man will be two in an hour...where does the time go?!?!?!? I was looking through pictures today of my baby shower and Aidan's birth. I remember those days so vividly, just like it was yesterday. But, looking back on these two years...so much has changed!!

Aidan was the perfect baby!! He never cried, slept through the night from the very beginning (yes, looking back, this should have thrown up a red flag!!) and cuddled all day long :) But we also had some hard times, Aidan got sick. We got his diagnosis of Rett Syndrome and started to accept the fact that we have a "special" child.

The second year started pefectly - we celebrated Aidan's birthday all weekend long!! It was a great time :) We moved into our home (looking back, this was one of the best decision we ever made!), adopted a puppy and decided to make Aidan a big brother!!

Even though we've had what I think are a few of the worst days of our lives recently, we are so happy that we are able to be home to celebrate Aidan's birthday! Not only is tomorrow is birthday, but a start to a brand new life!! We definitely have a lot of hurdles to overcome in the next few days, weeks and months. But we're a strong family and we'll do it together, with our heads up!

We're home!!

We got home around 12:30pm. We had a steady stream of visitors of nurses and medicaly supply workers. But Aidan is now asleep, in HIS bed, peacefully dreaming of Spongebob :)

It's good to be home!!!!

Almost home!!

We complete our ventilator training today!! Yay!! Tomorrow we will meet the supply company at the house and they will bring all our supplies. So we can everything set up and ready to go for when Aidan comes home on THURSDAY!! As you can imagine, we CANNOT wait until Thursday gets here. Two more nights and then our little man will be home with us...exactly where he belongs!!

Aidan will have spent an entire month in ICU by the time we are discharged on the 24th. He'll be so happy to be home in his own bed...after he remembers where he is :)

Steps in the right direction!!

Today has been our best day yet!! Kip and I have scheduled all our ventilator training classes for next week. Unfortunately, this will push our discharge date back a little. But fortunately, we will have night nursing in place and will be able to go home on Thursday!! Just in time for Aidan's SECOND birthday!! Can you believe our little man is going to be TWO?!?!?!?

Aidan worked soooo hard today!! He has been off the ventilator all day, even was on room air - with no humidification for almost an hour!! I'm so proud of him!! We are working on getting him comfortable with a moisture valve which will fit over his trach - kind of like a barrel on a st. bernard (but without the whiskey!!). With this, he can go out and about without the need for humidified oxygen. Making our lives just a little easier :) Did I just say easier?? I really thought we had thrown that word out of our vocabulary!!

Kip and I had our trach and cpr classes today. I was so surprised how much we have already picked up in the last week! I feel like a little Spongebob, soaking up all information. I remember coming into the hospital...almost a month ago...and thinking "what's this entitle crap they keep mentioning? and why is it do damn important??" Now we ask on a daily basis what he's measuring. (FYI - it is a monitor they place on his vent tube to measure his carbon dioxide rate).

I'm still in shock that we may get to go home next week!! We have been in the hospital so long, that I'm forgetting what a normal homelife is like! I am longing for those mornings where I can walk into Aidan's room and pick him up and squeeze him good morning. Watching Spongebob on the couch together. Or getting a meal without having to hand the man at the register a $20 bill....yes, hospital food is NOT cheap!!

I think we are slowing accepting our new path in life...but still knowing that we will have a lot of hurdles to overcome once we transition back to homelife. But it will be so nice to have our little man home with us, in his bed where he belongs. Just with another tube to take care of, a lot more equipment!! But....there's no place like home!!!!!

My heart feels good!!

Aidan is improving so much with each passing day - actually each hour!! He is breathing so much easier on his own. We are still using the ventilator while he is asleep, but when he is awake, he's happy and alert!

And watching Spongebob!! Aidan is breathing on his own here, the blue tube is just giving him some humidified air so his throat doesn't dry out.



It was so hard to see Aidan suffer with that darn tube down his throat (and why it was so difficult to hold him!). But he's such a fighter, he must have known that his daddy and mommy really needed to see him smile, because he tried so hard!! Here is a picture of Aidan with his breathing tube getting his hair washed.



This shower cap is AWESOME!! It has a cotton layer to it that has shampoo and conditioner, after a 5 minute scalp massage (I know, the torture!!), your hair is clean and doesn't even need rinsed!! I REALLY need one of these for home :)

I'm so proud of my little man - he's definitely a fighter!! He is an inspiration to me and makes my heart feel good :)

Aidan Update

Aidan had his surgery yesterday. It took about an hour and he did fantastic!! We gave him a rest day yesterday, but this morning he is up giggling and breathing like a champ!! And I am so relieved, I did feel the immediate peace and relief when I could see his precious face and he was breathing on his own :) Kip and I couldn't be more proud of our precious little man!!

Thank you all for your love, support and prayers!!

Tomorrow is the day...

Aidan's surgery is scheduled for 8:30am tomorrow. I'm so nervous, scared and sort of happy all at the same time. I'm praying I feel the peace everyone talks about when I see him breathing on his own and he doesn't have a tube down his throat. Kip and I are asking everyone to pray that he recovers fast and well from his surgery, because we are so anxious to have him home for his birthday!! I can't believe my baby is going to be 2 already!!!!

Decision

Decision has been made...Aidan will be getting a trach. Aidan actually made the decision for us, he just couldn't tolerate CPAP at night, it just wasn't enough support. This was by far the HARDEST decision Kip and I have had to make, but was it really a decision? What was the alternative??

Thank you all for you love and support - we couldn't have made it this far without you!! And it will be greatly appreciated in the weeks to come!!

Tuesday morning

Kip and I were a little late getting to the hospital this morning. We are just so exhausted from the late nights and early mornings that we had a rough time getting started today, plus we had some errands to run. (Not to mention the LOADS of laundry laying on the floor begging to be washed!!) So, we missed rounds this morning, and were told by the nurse that the doctor wants to schedule a meeting with us today. We're are assuming today is decision day...do we trach Aidan??

His respitory therapist just came in and asked if we were going to have the surgery? So, that just solidifies our gut feeling that this is probably going to have to happen...

So now what??

So what do you do when you can't cry anymore? When ripping your heart out so it can't feel your child's pain anymore really isn't an option? I guess I have to put on my big girl pants and realize we are opening a new chapter in our lives and we (like many times before) will survive. I am proud to have the O'Rourke name, we are a strong bunch, we are fighters, we will survive!!

Prayer Request for Aidan

As most of you might already know...we are in the hospital. Aidan and I went to PA for a family visit last month while Kip was traveling for work. We were having a great time the first two weeks, but the last weekend, while in Scranton, he came down with a high fever and vomiting. We went to a local ER, got admitted bc the fever wouldn't break and then all hell broke loose.

Aidan fell asleep and wouldn't wake up. He started destating and needed to be intubated to breathe. Then he started having seizures. He was then flown to the closest children's hospital in Danville, PA (population - not many!!)

Doctors have tried to extubate Aidan twice, unsuccessfully. We are on the third intubation and were transferred back to Kosair yesterday in Louisville. Aidan is taking very shallow breaths that doesn't allow enough carbon dioxide to escape his body. He is also fighting a lung infection.

We are trying to be optimistic that he will recover from the infection and be able to be successfully extubated. We are on day twelve of our hospital stay and although we are finally in our hometown and Kip and I can go home to sleep in our bed...it was extremely difficult to walk in and see his empty room.

We are asking for prayers that Aidan turns the corner and can come home soon with us!!