No words

    It is with a heavy heart I write this update. My amazing boy left his temporary home last night around 11:45pm. After a long battle my sweet super hero will not be getting back up. No one expected the end result of this trip to be such an amazing loss. Aidan was to be resting peacefully if not at the hospital then at home with us.

    Instead Aidan's broken little body is awaiting his flight home while I know his spirit will be travelling with me.

    This loss is so profound, as his mother I'm not sure there is any recovery great enough. My life will be far to quiet, to unbearably lonely to have any words to express it. Aidan made friends with anyone he met, and anyone who knew Aidan knows what an amazing little man he is. His loss will leave an unending hole and an irreplaceable loss is my heart and life. I will forever be a better person for having had the amazing time I did with him.

    Please keep our family in your prayers as I am sure the next few minutes, weeks, and years will be the biggest challenge we will ever face. Thank you for all you love and support.

To my little man,

   You are my heart and soul. Please don't be afraid as you move on as I know you are the bravest person I have ever known. You are my brave strong boy and I will take you with me where ever I go. While I stay here and miss your happy face and big strong hugs, you go run and play as you are meant to. You are free from the body that held you back and can run at full speed now, just remember to blow me a kiss as you whiz by at least every now and then.

I love you till the end of time with everything I have.

Worse things getting worse

So our morning turned into night time...wait how long has it been since I've seen daylite? Aidan is stable for now with his heart rate up and his blood pressure down. He will recieve more blood products tonight along with lasix to get extra fluid out of his lungs. IF thats a big one, he tolerates the lasix and doesn't drop his pressures he will get Nitric oxide overnight in preperation for tomarrow.

Round 8:00am Aid will go back into surgery to find whats causing him to bleed. Lucky us/him. Hopefully he will get some sleep tonight because he definatly didn't last night. Aids little body has hit it's max but he is fighting like a champ. After such a rough morning Aid woke up and asked us to play tic tack toe....Aid is very good at tic tack toe but watch out because he cheats! More updates will follow and I have posted a blury webcam pic from tonight round 6:15p. Mom and Dad are wiped so I can't imagine how poor Aid feels. Everyone please keep him in your thoughts and prayers.

We love you little buddy.

Good grief

Aid had an extremely long night last night. No sleep or semblance there of. As much as Ryan and I tried to tell the nurse Aid was not doing ok her and the residents stuck with the cause of the uncomfies as a high fever. Aid had cultures drawn from every bodily fluid he has to make sure he's not infected....still pending.

Finally around 6 am Aid's belly was so taught you could bounce quarters off of it. He threw up a ton of blood, and after yet more waiting around we finally saw a doctor... 30 minutes later, who moved Aids NG tube back up into his tummy. When they drained the contents we found close to the entire unit of blood he'd just received over night.

Aid's pressure tanked with-in 2 minutes and away the circus went. At least my asking the clerk to page the surgical team produced results. Otherwise we may have never seen them this am!

Right now we are headed down to get a CT of Aid's tummy and try to find the reason for the bleeding and make sure his shunts still open. Unfortunately, any training you have to stay calm in an emergent situation goes straight to hell when it's your own kid bleeding so much and hurting so much. All we can do is think happy thoughts and try to make Aid as comfy as possible. Please keep him in your thoughts today because it's definitely going to be a hard one.

A little set back

Well it looks like we jumped the gun once again! I think we all got our hopes up after Dr. Superina told us the shunt was open. The shunt still looks good but poor Aid can't seem to bring his blood counts back up. Right now he is getting a unit of red cells and maybe more with a platelet chaser later tonight.

As I mentioned earlier the little man is definatly gray only now he's itchy on top! Benedryll and blood have always been the right combo to get Aid on his feet before so lets all cross our fingers that it does the trick this time too.

On a lighter note, I'm pretty sure Ryan has a whole new respect and understanding for a catheter! He cringes everytime he sees it. Now just multiply that one little catheter by an internal monitor an external monitor and more than a few hours of labor...then he'll have something to cringe about! Gotta get the smiles where we can take them today :)

Ouchy

Post op day 1...Aid is still brave and trying his best to be patient. I think we all hate him having to be NPO. We have met just about every resident, most of the surgical team, all of the pulmonary team and 90% of the Hematology team. Still don't know most of their names!

Aid didn't sleep well last night, mostly from pain and being checked and bled every 5 seconds! hehe Alright maybe not EVERY 5 seconds. For some dumb reason the residents decided Aid would be just fine useing tylenol or motrin for pain control. Yeeeaaah. After making our thoughts very clear, Aid was set up with a PCA pump early today which has helped a ton.

As is Aidan's usual plan (god only knows why) he dropped his blood count over night and just under half of his platelet count. Along with being swollen, battered and stitched up to within an inch of his life, Aid has achieved a whole new shade of gray this afternoon!

After an ultrasound and an echo the doctor seems confident Aidans shunt is open and doing AWSOME!! For now we are going to watch Aid's counts and hold off on a transfusion. We will hopefully "fingers crossed" rest and get our strength back for tomarrow. We have some sweet pictures to post but will have to wait for daddy to get back with our camera cable! Aid has said he misses all of his friends and family and wants to say thanks for all of your loves and well wishes.

We will post again soon and hoprfully get our pics up tonight sometime.

He's out!!!

Aid made it through surgery like a champ today. He is resting in the PICU now. Keep your fingers crossed for a quiet night but definatly don't hold your breath! Let me give you a breakdown of the little guys current standings.
He is on Oxygen, he has a NG tube which goes from his nose into his tummy. There is a central line under his left clavicle and an arterial line in his left wrist with 4 ports. They used the left side of his neck to harvest the jugular which now has a 5 inch inscision that runs from just under his ear to down just past the notch in his collar bone.

Aid has a pretty sweet (obviously not!) Mercedes shaped inciscion that starts in the middle of his sternum an runs all the way down his tummy and across to both hips.

We still have a long way to go before we are out of the scary woods, but for right now we are in good shape! Everyone keep your fingers crossed for no blood clots and a ton of good rest....for mom and dad too!

Closeing???

We just got word they will begin closing up. Sometime between now and an hour from now Aid will be on his way to the PICU. I will update again sometime this evening when we get all settled. So far it sounds as though he's done great. Our rock star should be on the mend very soon.....I hope

Things are going...and going...

We just recieved an update on how Aid is doing. The doc has disected through the liver, down to the portal vein. It looks like our shunt is a go. They have started to harvest the vein they will use as the shunt. (his jugular) Aid will definatly get the chicks with all the "cool" scars.

Surgery is underway

Well as always we were late to pre-op this am! Ended up not mattering as the Doc's have grand rounds on Monday and start an hour later. Aidan was as brave as ever this am. No tears to be seen from him, even when we got into the OR. He is such an amazing kid. No I'm not mentioning any tears from mom or dad because really who wants to hear about it! (there have been plenty)

We hooked mama hippo up with a mask and an ID band to match Aid's. For those of you who haven't met mama hippo, she is Aid's lovie and makes every trip to the hospital with him! I'll try and find a picture to post.
The first few hours will just be getting Aidan prepared and getting all his lines in place. Hopefully we will have an update in the next hour or two and I will post the news.

The Shedd and a little note for Aid

As one last outting for the kiddo's we decided to go to the aquarium. What an awsome place! First off driving there we got lost....go figure! The **** "slight" and "hard" turns are gd ridiculous! In the end we found our way and drove right past Soldier Field.

The aquarium in Salt Lake could fit in the lobby of The Shedd. Aid was able to see 3 diffrent sharks, a huge sea turtle named Nickle, Beluga whales (my fav) and dolphins! One day we will go back when we can sit and watch the whales longer because we all loved them!

The rest of the afternoon was spent exploring and there was plenty to see! We came home to relax and watch the Super bowl which really meant eat all the yummy bad things for you! I sure hope Aid had a great day today. I think everyone with us had a bit of a heavy heart today. Tomarrow is the start to a scary journy for all of us. Aid is such a trooper and still says thank you to the doc's and nurses even when he has to get pokes. Unfortunatly our little man has been forced into growing up way to soon in some aspects.

Being that I am having a bit of a hard time taking my bug into a hell surgery tomarrow and that I am having an extreamly hard time doing so, I figure I could write to him on here so he can look back and see how we felt about eveything. So I appologize if the next little bit is super mushy....just scroll past if you like! hehe

To my little man, I know that you are my super hero rock star. I know that the next few weeks and maybe even months will be harder than any you will ever know. I wish that I could go in your place and you could be the happy wild little dude you are ment to be! I will stay by your side morning noon and night and feel every poke, prod, and pain you do as only a mother can. You are my world and my rock kiddo, so together with our our family and friends we will get through this. I know that these doctors are the one's who will restore all your super hero powers to the fullest and you will be back in all your full crime fighting glory before you know it. I love you to the moon and back.

So on a sad note with lots of butterflies and stones in my tummy, we head to bed and off to the hospital at 7:15am..way to early if you ask me! I will post an update here as soon as we have one. I know we have such amazing people in our corner. Thank you so much for all you well wishes and prayer. We love you all and wouldn't make it without you!

Meet the Doctors

We arrived safe and only somewhat (or mostly) crazy in Chicago late yesterday afternoon. All three adults and two kids completely overwhelmed, underslept, and missing Salt Lake! This morning (Friday 4th) we were due at the hospital round 8:00. Downtown Chicago traffic is lets just say "interesting". We arrived shortly after 9:00. Luckily our day began with a study and they were very understanding of our tardiness.

Aid is participating in a study to measure how well children with portal vein thrombosis (blood clot) use their calories. It's proposed these special kiddo's waste a ton of calories due to lack of blood flow. Aidan is only the 12th person to studied over a 5 year period. For the study we have to collect all Aid's poop for 3 whole days...lucky us! Afterwards the lab can burn the poop to measure how many calories are wasted and compare it to how many calories Aid has eaten over the 3 days. So when you have a bad day at work think of whoever works at that lab!

After the study we went down and met with Dr. Superina who will be performing the surgery. He is very nice and made sure we had plenty of time to ask questions and discuss our "plan of action". As it stands now we are due in pre-op 7:15 on Monday morning. They will start the surgery round 8:30 and begin placing his lines. Sometime around 10am they will begin dissecting down to and into the liver to find the portal vein. If the vein is good they will move on and harvest a jugular vein from Aid's neck. If all goes well the surgery should take 6-8 hours. Aid will be admitted to the PICU and will most likely stay there for a few days. We also met the Pulmonary team today who are very on top of the upcoming surgery.

Aid is a little overwhelmed after our long day today but came home to an extactic sister and big snuggles from Grammy around 4:00. If all goes well tomarrow, we will visit the Childrens museum and hopefully the aquarium and the Sears tower on Sunday. May as well wear the kiddo out before his big day on Monday! With any extra luck or time I will make sure and add some pics!

Packing

Well it's t-minus 2 1/2 days till take off. Not sure which is worse washing all the clothes so we can pack what we want or the actual packing! Aidan is just on the tail end of a good cold so keep your fingers crossed the doc's don't delay the big day. I guess this is really going to happen! Think warm thoughts for us as we head into the falling temps!