Life

A quote that is helping to ease the pain little by little.

"Every day may not be good, but there is something good in every day"

This is my daily favorite picture of Aidan
I love this picture because it was while we were on our "summer vacation" from the hospital, before all of the surgeries and scary drugs. He was my perfect little angel who was so full of wonder. He would look all over the room not focusing on anything in particular because he was just trying to absorb so much of life. Normal life, not life in the hospital. He was supposed to get back to that, but he never got the chance!

I never really noticed before how many babies you encounter in your day to day life. Everywhere I go, it seems like there are atleast 10 babies as well. Some crying, some sleeping, some, like Aidan, trying to absorb as much of their surroundings as possible. I'm jealous of these people, I want what they have!

Aidan Kiczek Obituary

Aidan Kiczek's Obituary

Aidan the Hero

The love and support we have received from everyone is truly a blessing and what helps us get through the days. We honestly can't thank anyone enough for all of the prayers we have received.
Yesterday they had to repeat the apnea test because the first one was inconclusive due to a technicality. We have spent as much time with Aidan as we could, we've held him, read him stories and cried for him. We prayed that God would grant us one last miracle, and he has. Aidan was declared brain dead at 6:33pm today, however his heart will go on beating. They have found a child in Illinois that is Aidan's size and desperately needs a new heart. They also have been testing his blood to see if he might be able to either save two children who need kidneys or one adult who needs one. Unfortunately due to the amount of TPN his body has been receiving his liver isn't a viable option, but they will use it in research.

We Miss Aidan

    This is the worst day of my life. After Aidan coded he was only "down" for a short while but unfortunately Aidan suffered a traumatic brain injury from which he will not recover. Last night the doctors gave Aidan a CAT scan and it showed heavy brain trauma and swelling. We went home to the Ronald McDonald House and tried to sleep and calling the hospital throughout the night worrying about Aidan.
    Today Aidan had a Electroencephalography EEG and the results were very bad. Afterwards the Attending from Neurology department did an evaluation of his reflexes then took us to the Family Consult room and told us the news Aidan is Brain Dead and has no lower or higher brain function. So essentially he passed away 9/10/07 but it will take until tomorrow to actually declare him legally dead. We have chosen to donate Aidan's Organs after he is officially declared brain dead so they are doing there best to keep him around so he can "gift life" to other sick babies in need of a transplant.
    We know everyone that reads this blog loves Aidan as much as we do will be secure in the fact that we will carry on. The next year will be hard for me and Laura and we will continue to post our thoughts and prayers for Aidan on this blog. We will need your support and prayers over the next few days. Although we feel there is no chance Aidan will come back from this we are still praying for a miracle and even if God doesn't grant us a miracle we know Aidan will be in his bosom. We had the priest come and gave Aidan last rights. We will keep you informed if there are any changes but please pray for us in our time of need.

One Step Foward, Four Steps Back

Code Blue
    Aidan got moved over to 5A. Me, Laura, Barb and Cindy we all with Aidan relaxing and our nurses were in the process of setting up his monitors when Laura noticed Aidan was not breathing or moving. The Nurse immediately pushed the Code Button and our world collapsed. I screamed, "Help" and got run over by about 30 nurses and doctors.
    We were immediately shuffled out into the worst room you could ever imagine. The Butterfly Room were they have a quilt on the wall with lots of butterflies and one square that said butterflies are free. I wanted to break the room, I wanted to scream and mostly I cried. Not knowing what was going on with Aidan was the worst thing ever. While waiting I had said to Laura, "Good Thing I went to church this sunday." Child family-life told us he had to muscle through at least 10 people to get any answers and came back after 2 minutes saying that he is being Intubated to put him back on the Ventilator. We had asked if Aidan's heart was beating and he said he would come back with more news. Those minutes were the longest of my life. Jason in child family-life came back with news that Aidan's heart is beating and they are still working on him. After a few minutes they allowed me and Laura to see Aidan in the Intensive Care Unit and he looks like he is fighting it and he has just about everyone looking after him now. We are worried that this may have caused nerological issues and they will probably give him tons of tests over the next few days. He has not moved since he coded and they are working on improving his blood gases. It may take a while for him to move after this so we will keep you posted.

Post Op 11

Visit from my Grandmother and Godmother
    Aidan was almost moved out of intensive care but Dr. Foker decided instead to put it off for one day to avoid him moving on the weekend. After visiting with Aidan we waited for Cindy "Grammy" and Barb "Godmother" to arrive from their long drive from New Jersey all the way to Minnesota. I know how hard it is to drive here as me and Dziadzi "Grandfather" had to do it about two months ago.
    After they arrived we chatted a bit at the Ronald McDonald House. Barb and Cindy both fell in love with Laura's Scrapbook she's spent so much time on. We then dropped them off at the Radisson so they could freshen up and feel better after being in the car for two days. We grabbed a quick bite to eat at Sally's a local bar and grill near the hospital, then went to visit Aidan.
    It was very emotional for all of us to talk about Aidan, look at the scrapbook and visiting Aidan. Grandma and "Aunt Barb" both agree that Aidan looks great and is so cute, it's just a little overwhelming to see all the tubes hooked up to him in person.

Grandma and Aidan!

Post Op 10

Aidan is getting stronger!
    Aidan is very cute today. I got to hold him for the first time in 40 days and 40 nights. I teased Laura about being able to fast from holding him longer then she could! He is gradually getting stronger but still has a very soft cry and continues to grunt to regulate his breathing. Respiratory will start giving him bronchial drainage (BD) treatments again. He used to get them while he was on his ventilator and we used to tease the respiratory therapists that they enjoyed beating our son. BD treatments involve the respiratory therapists lightly pounding on his back to help him work out any secretions in his lungs but really does sound like they are beating him. Aidan will continue to gain strength in his lungs and will probably be more normal over the next few days.
    Aidan will start getting speech therapy soon to help him learn how to swallow. The speech therapists will start by working with his pacifier. He has already taken his pacifier for us but can not hold it in for very long.

Aidan and Daddy!

Extubation

    My baby Aidan is back!! Well, not completely, he still looks spacey sometimes, okay most of the time, but he is doing so well! Today Aidan came completely off his Morphine and Versed. He can get "bumps" of them still, but he usually just gets his Methadone and Ativan doses. Aidan also got extubated today!! He has such a tiny weak little cry right now, it is almost painful to listen to, but that is because he has a major sore throat from the ventilator, so they are giving him some medicine for that. He has been swallowing most of his secretions and only needs suctioning here and there. He has been grunting some since being off the vent. The nurses explained that he does that because its his way of maintaining his "PEEP", which is Positive End-Expiratory Pressure. PEEP keeps the lungs expanded to help get oxygen from the lungs into the bloodstream. The ventilator used to do this for him, so his body is making it's own adjustments to keep him comfortable.
    It's so nice to be able to see Aidan's whole face! In a few days he will probably get the nasal cannula out, so we will get his first tube free pictures ever! Michael was unable to hold him today and is still upset that I got to hold him yesterday, so I like to tease him every chance I get about it, LOL.

Aidan Extubated!!

Post Op 8

I'm Jealous
    Aidan is doing so well! The residents have worked out a schedule and he will be off his Versed and Morphine by tomorrow hopefully. They will keep him on Ativan and Methadone to help him through withdrawal. They are also actively weening him off the ventilator the rate has dropped from 30 to 18 over the last 24 hours and he has been responding well.
    In other news I am jealous of Laura! After seeing Aidan doing so well and wide awake I convinced her to hold Aidan. After 36 days of not holding Aidan Laura was almost in tears while holding him. He is still on the ventilator so instead of moving him too much I decided I will hold Aidan tomorrow but I can still be jealous of Laura. As you can see in the picture he still looks very highly sedated and he does not have complete control over his eye movements.

Laura holding Aidan!

Post Op 7

The Rollercoaster that is Aidan.
    Aidan is slowly beginning to get some more muscle function back. He is wiggling his fingers and toes, opening his eyes and moving his lips/chin around. Just a few minutes ago he started moving his left arm a bit. He has been off the Vec for 26 hours now and seems to be doing really well. They hadn't really messed with his Versed and Morphine, but today Kirsti lowered both of them down to .19mg/hour. They are moving very agressively with him but they definitely think he can handle it. He breathes over the vent (a good thing now) mostly only when he is awake. Everyone seems to be in agreement that he can definitely do the work himself, he is just relying on the vent right now, which in my opinion he is allowed to be a little lazy right now just because he has so much other stuff going on. He really doesn't like the vent tube though. Earlier this morning I saw him cry on the ventilator for the first time, it was heartbreaking to watch him turn red and cry without having any noise come out.
    But in uplifting news, Aidan had saliva come out his g-tube! That is such a huge relief, it means that he is swallowing and there is no leaks! So Kirsti was able to remove his chest tube as well. Aidan seems alot more comfortable without that in, his heart rate dropped a good 10 bpm. It's been quite an eventful day, if all that wasn't enough, we got moved to another room.

Post Op 6

Aidan is waking up today!! They just rounded on him and they asked if he had his Vec Holiday yet and Kirsti replied, "He is getting a VERY LONG Vec Holiday today-he's coming off of it" I was so excited to hear that! They also disconnected his Foley catheter and if he is able to swallow his secretions and they go into his g-tube, they will look into taking out his chest tube. He has lost some weight, it was all water weight, and is down to 5.4kg (they wanted him at or under his dry weight of 5.5). We will post pictures of him waking up as it happens.

Post Op 5

    We were really hoping that Aidan would have been woken up today, but we haven't seen Kirsti or Dr. Foker yet today, so I guess we will have to wait until tomorrow. Aidan had a pretty long Vec Holiday again today, 2 hours and 15 minutes, but he decided to opened his eyes again. :) He finished up his antibiotics today from his fever on Thursday.
    Now for the bad news, Aidan's central line that is in his groin no longer will draw blood, they can still get meds to go into it, but nothing will come out. They draw blood on him 2 times a day and check his potassium at least 3 times a day. Christina had to use his RA "Right Atrium" line to draw blood. They don't like to draw labs from there, but they will have to use it for now. Christina is quite bummed because the RA does not draw usually well either. Tomorrow they might get one of the Attendings to re-wire his central line.

Post Op 4

    Well it had to happen they moved Aidan to another room. After 1 month of being in the same PICU room they moved us down the hall in the PICU. They typically move patients around alot more and we have been lucky to be in the same room for so long. I helped get Aidan all settled into his new room and moved in another chair from the hallway.
    After visiting Aidan, we went to a barbecue for Nadia Pierce. Nadia is four years old and was born with Esophageal Atresia just like Aidan. She recently just got out of the hospital and is the oldest case of Esophageal Atresia ever to be connected by Dr. Foker. Nadia's Parents are from New York City and moved to Minnesota because two years ago they began their journey to fix Nadia. We had such a good time and are glad we went. When I tell Aidan about his Esophageal Atresia and how much work we put into making him better I will also tell him about Nadia. All the hard work this cute 4 year old girl and her family had to go through just so she could eat like me and you makes her and her family our heroes. I can't even fathom having to be in an out of the hospital for 4 years. Please pray for Brian and Pascale and their daughter Nadia that they stay out of the hospital for a very long time.
    Aidan will be hopefully be waking up tomorrow or Tuesday and we will have to go through the painful process of watching him detox from all the morphine, and go through withdrawal symptoms.

Post Op 3

With knowing that Aidan is going to be waking up soon it's getting harder and harder to just watch him lay there sleeping. Nothing has really changed yet. They gave him a Vec Holiday today for the first time since surgery and it took 5 and a half hours! We got there and he was on holiday, we went to the Minnesota State Fair, came back and he was still on holiday! However, the payoff was so great! Watch the movie below to see how he woke up. I was so excited to see him open his eyes! I could watch this video over and over again. :)

Aidan with his eyes open!

Aidan waking up on Vecuronium Holiday!