Home, Sweet Home

Yeah. Finally after 5 long weeks, Mommy and I finally got to come home. We got alot of help from everybody at Doernbecher's. Everybody up there is awesome. I already have two doctor's appointments scheduled for next month. Mommy is so glad to be home. I got to see my Grandpa Ron and Uncle Garrett for a few minutes today and I got to be held by Grandma Sam. Boy I missed her. She had to wear a mask when she held me, but that is fine. I also got held by big brother which was awesome. I love him alot. I am sure in the next few days, I will probably be seeing some of you. I am going to be a hermit for a while, so bear with me. If I catch anything, it would not be pretty. Love you all, Ayden

Preparing to go home!

Well I was moved to the intermediate care section and they are preparing me to go home. The doctors are hoping to send me home this weekend!! The doctors are trying to teach my mommy how to care for me while I'm at home. I will probably still be on a feeding tube. They will send stuff like oxygen and a saturation monitor home with me to help my parents keep me healthy. This is very good news. I want to go home!

Another good day

Big brother, Mommy and Me!
I was not a happy camper when they took out the breathing tube!
I like looking at Mommy because she is so beautiful!






Well not a whole lot happened today. The nurse did take out my sutures and also my IV in my right arm. I did not move to the NICU today, and may not end up moving at all. The NICU is very full and the PICU is not, so for now I stay there. I did hear that I don't have very long before I might get sent home, maybe a week or two at the most. Dr. Langley came in and told Mommy and Daddy that I am probably only going to have one working ventricle, so that means that I will most likely have two more surgeries. He said the next one should be in about 4 to 5 months. Daddy took some pictures yesterday and today of me and he is going to add them in. Love you all, Ayden

Still goin strong!

Today has been a great day. I am off of the Dopamine, the Heperin and also the Digoxin. I am only being given aspirin. I am also completely off of the oxygen and breathing on my own and doing a good job of it I must say. I am still being given stuff for withdrawals for being taken off of the Morphine and also to help me pee. I got to see my Mommy and Daddy, big brother, Grandma Penny and Aunt Tricia today. I hope Grandma Sam gets better soon, so I can see her and also see my Grandpa Ron and Uncle Gary and Uncle Garrett. The doctors said that I may get transferred to the NICU tomorrow, which means that I am doing so good, that I may get to go home soon. YEAH! Anyways gotta go and get my sleep, so I get stronger and get to come home and see everybody. Love you all, Ayden

Mom and Dad are proud of me!

Today I got to see my dad for the first time in 9 days. I was very happy, and so was Mommy. I also had my breathing tube and my OG tube taken out today and I have been doing awesome. My respiration rate is good, my O2 saturation is great and my heart rate and pressure are good. I am not feeding right now, but I am down to 5 on my Dopamine, which is good. The only cruddy thing is that in order to give me more , they had to try to start a peripheral IV line, because they can't put in the same line as the Dopamine. I did get to see big brother today, even thought he is sick, but he is doing better. I also got to see Aunt Tricia, which was cool. Anyways, I will let you all know how I am doing tomorrow and Daddy will have some new photos of me to post when he gets home on Monday. There is one of me when they took out my ventilation tube where I am not a happy camper. Love you all, Ayden

On our way to tube freedom!!!!

Well I've got good news. I am on the last setting on the ventilator. That means I could be off all that stuff as early as tomorrow afternoon!!!! This time I intend on staying off that machine. I am doing pretty good at keeping my pressure up today too. I am so excited I get to see my daddy tomorrow I haven't seen him in 9 days. Thats a very long time for me. I was told I might not get to see my big brother though because he has a cold. Well if I don't get to see him at least I know my mom will tell him that I love him very much and miss him alot. I can't wait to get out of here and meet everyone. See you guys real soon Love Ayden.

Hold 'n Steady!

Well not a whole lot of changes today. I am still looking good and the important thing is I didn't take any steps back. The nurses and doc's told me that I get to drive this thing as fast I want and I feel like driving it like my grandma. Just kidding Grandma I love you:) Well I think I'm getting tired of this ventilator thing. Maybe I'll get it out again soon. Talk to you guys tomorrow. Love Ayden

Happy Day!

Well I got to hang out in my mommys arms alot today. I had a great day and the docs are impressed with how I'm doing. They are going to start me on some new meds and hope that it will help keep my pressure up and keep my heart from getting too stressed out. I am still on the ventillator but I am not on any oxygen, this was a big step for me and I am doing great. I get to wear some clothes finally and hopefully I will have some new pictures up to show you how cute I am. All the nurses love my really cool mohawk.
I am headed in the right direction I hope I will get to share more good news with you all very soon. Thanks everyone for thinking of me. Love Ayden

Still goin strong!

Well today I am doing very well. All the surgeons and cardiologists are stumped. They are not sure why some of my numbers arent matching. Right know they are giving me another antibiotic to make sure I don't get another infection. I had a CT done on my heart to make sure it was looking good. From what the surgeons say its looking great. I am having a little problem getting off some off the medication they have me on. This medication called Dopamine is a really hard one to kick. So far no more surgery is planned. Lets hope it stays that way. Well I will let you know how it goes talk to you soon.

The ongoing roller coaster.

Well it's been a few days since I've posted anything Saturday was not such a good day. As you can imagine with all the different kinds of meds that I'm on and the stress I've been under other things are bound to happen. Saturday evening my stomach started to bleed and I threw up a lot of it. This could mean that I have a stomach ulcer or just that all the stuff I'm on has been wearing away my stomach lining. The bleeding has stopped and they have me on even more meds to help my stomach. I did really good on Sunday and haven't had any new problems. Today they are trying to wean me off the ventilator. If I am still not making enough progress they will have to do another surgery. I am a strong boy and will continue to fight really hard. Thank you every one for keeping in touch and reading my messages.

Two Days Forward, One Day Back

Well, after having two good days where I had stuff taken out, I was bound to have a not so good day. But it's not as bad as you would think. Yesterday, I had to be re-intubated. I was working so hard at breathing that I wore myself out and was not able to do other stuff that I needed to do. So the docs did this and my O2 sats got really good after this. The docs said this would only be for a few days, and then they would let me try again without it. But on the flip side, I got held by Mommy a lot more. I sure do miss Daddy and big brother, but I will get to see big brother tonight and this weekend. Also Daddy wanted me to thank everyone at his work for their donations, him and Mommy really do appreciate it very much. Love to all who love me, Ayden

Mom and Dad get to hold me!

Yesterday, Mom got to hold me for about 4 hours. Dad had to convince her to put me back on my bed, just so she would eat dinner! Today, my Dad got to hold me before he had to leave to go home. This made him very happy and again, I only got put back in my bed when Dad had to go eat lunch. Maybe this weekend, big brother will get to hold me. I sure miss him! I did all right today. I wasn't spectacular, I just had alot of crud in my lungs and nose and this made it hard for me to breathe all the oxygen from the CPAP machine. They suctioned out alot of stuff and they also stuck a tube into my stomach to suction out air that I swallowed because I do that while I breathe. My dad is going to put a few pics up on the site. One of them my dad wanted to show you all how blue my eyes are. Sorry about all the tubes. Love you all, Ayden.

Finally, less hoses than the garden center at Lowe's!

Today went all right. I had my chest drain tubes taken out. I also had my hard line that was in my neck since the first surgery taken out,too. After they took that out, I bled like a stuck pig for about 45 minutes, because I am on blood thinners for my shunt not to get clotted. A couple of things that I also have wrong, but the nurses are working on, are that I have a ear infection and also a urinary tract infection. I also have a large blister on my neck and also adema, which is when all the fluid in the body pools on the side I lay on. They aren't sure how I got the ear infection, but UTI is from the catheter I had, which was taken out yesterday. I am on antibiotics for both of the infections. My SpO2 level has been up and down, but that maybe because I have some fluid in my lungs, which they are suctioning out, or I may be shunting. Shunting means that because of my ASD, some of the un-oxygenated blood is passing through that, rather than it all going to the lungs like it is supposed to. Daddy said he will post some new pics of me once he gets home. Well I am gonna go. Love you all, Ayden.

My breathing tube is gone

Sunday went really well for me, much like Saturday. I had my IV in my belly button taken out, which was nice. So far for Monday, I have been taken off my Verced and Morphine. The nurse said he would be using Methadone to bring me off of withdrawals. Man I feel like the people Mom has to deal with, being on Methadone. :0) Anyways, like the title says, I am also off the ventilator, which means I am more awake and more irratible. My lungs have a lot of crud in them still, which is messing with my SpO2 levels. Everything else is good for now though. I am on what they call a CPAP machine, which goes over my nose and just assists me with my own breathing, no forced O2. If I do really well the next two days, Dad is probably going to go home and get some stuff taken care of and also go to work. He will come back up on his weekends to see Mom and I. Mom and I will miss him. Well that is all for now. Love, Ayden.

Doing better

At first, during surgery, the doctors were impressed with how well I did. I was on room air and was doing well. So when I came out of surgery, I started kind of having the same problems as before, but not as bad. It took the nurses and doctors some time to get me where I needed to be. Saturday was much better. My LAP (Left Atrial Pressure) and my RAP (Right Atrial Pressure) are the same, which is what the doctors wanted to accomplish. I did have a lot of crud in my lungs that the nurses got rid of and they also have me on diaretics, to help get rid of it through my kidneys. I did awesome on Saturday and I got to see some more of my family, including my Grandma Penny and Grandpa Ron, Grandma Sam, Aunt Tricia and Uncles Gary and Garrett. My dad told me that my great grandparents are going to come see me on Sunday. I will let everyone know how Sunday goes. Bye for now, Love, Ayden

All fixed up!

I am out of surgery and everything seems fine for now! The Doc didn’t have to move my shunt, he said that everything looked good. He did clean up around the end of the shunt, which is what he thought was the causing the main problem. Dr. Langley did end up putting in an ASD and just like they thought, that took care of the pressure problem that I was having also.

Another Surgery

Well as the title implies, I have to have another operation. The reason behind this one is that after my last operation, I should have been getting better, instead I am being like a yo-yo and having my vitals go back and forth. This next op will involve taking the end of my shunt and moving it to a different artery, because the one it is attached to now is narrowed. After this is done, Dr. Langley will also be removing tissue from my heart and making a small hole in the atrium wall, which is called an atrial septal defect. I already have a ventricular septal defect. The idea is that this will even the flow between the two atrium, which is something I am having problems with now. My surgery is not as risky as the first one, which is good and Dr. Langley is confident this will solve the problems I've been having lately. Anyways, Mom and Dad are really chomping at the bit for the whole stay at the hospital to be over with, so we can all go home. I am really looking forward to getting to see my bedroom and getting to see my two big, stinky puppies, Koda and Gunner. Anyways, I will update everyone with how I do tomorrow. I know my life has been a roller coaster for all of you and my family really does appreciate all your thoughts and prayers. Love, Ayden

So far, so good

Hey it's Ayden again. So far, I did pretty good overnight. Right off the bat, this morning, they were going to start a PICC line on me, so they can take the hard line out of my neck. Mom bumped into Dr. Langley and he told her that I may get taken off the ventilator today or tomorrow. Yeah! Anyways, as of right now I am doing good. Talk to everyone later. Love Ayden

Wednesday

Well, my parents thought, my doctors thought and I thought I would be having another operation today. I was supposed to be first on the list this morning, but another little kid got sicker than I was, so they worked on him first. When Doctor Langley looked my numbers this morning, he was somewhat happy and suprised. Everything was doing very well, except my CVP (Central Venous Pressure) and my LAP (Left Atrial Pressure). These numbers should have been the same but they were'nt. So they put off my operation for a little while, so they could look at me. This made me and MOM and DAD very happy!!! Well I will let everyone know what we find out later. Bye.

Tuesday

Well this morning, the doctors did the rounds and they decided to perform a test called a cardiac catheter,where they injected a dye into my stream, so they could see where it ended up at and see how it flowed. They took me to do this at around 10:45 am and I did not get back till after 4:00 pm. Mom and Dad were pretty worried, and Uncle Gary came by to see me and I was gone. Darn! After doing the test, Dr. Langley talked to Mom and Dad and told them that I would need to have another operation. This operation is not as long and bad as the last one. Dr. Langley said that they are going to disconnect my shunt and move one end to my aorta, because where it was connected was narrowed due to when they sowed me close, the tissue kind of got pushed around and moved it a little. The only problem with this operation is that I just had one, so I might get sicker possibly because my immune system is not tip top yet. But the good news is that I will have two of the best heart doctors in the world working on me tomorrow, Dr. Stephen Langley and Dr. Ross Ungerleider. Google both of them to see how good they are. Anyways I am pretty tired, so I am going to go. I will be sure to let everyone know how I am doing tomorrow. Love to all. Ayden

Monday

Well, Monday was kind of a messed up day. My heartrate was all over the place, sometimes as low as the eighties and as high as the one seventies. The doctors and nurses thought this was due to my electrolytes being low, so they tried giving them to me and for some reason, I seem to need them higher than normal. Finally my heartrate got somewhat better, but it definetely put a strain on Mom and Dad. I was doing better by the time they left to go to bed.

Saturday and Sunday

After my dad published my blog on Saturday, I started feeling really bad. My pressure and O2 levels were all over the place. The nurses gave me some diaretics to help me pee more, to flush my system and that seemed to work, because by the time my Mom and Dad went to bed, I was much better. I like Ali, my nurse. She is nice and very smart. On Sunday, I was much better. My pressure and O2 were still kind of all over the place, but I felt better. I got to see my brother. I haven't seen him since I was born. That made me happy. I also got to see my Grandma's and Grandpa and my uncle Garrett. Yeah! My dad said he will post a blog on Monday after we see how everything goes.

May 3, 2008

Happy Birthday to Me! I am a whole week old today. I am doing a whole lot better also! I am completely off of the Epinephrine, which helped control my pressure. The nurses are also going to start weening me off of the Dopamine, too. The nurses are also going to start feeding me some of my mommy's milk through a tube in my nose, which makes me happy. I am hooked up to a respirator which helps control my breathing, but I am also being a big boy and taking my own breaths as well. All of my vital stats have been good, including my temperature, which kinda got high yesterday. I am also on a thinner, just like my Grandpa Ron, so my shunt does not get any clots in it, being as how it is only 2.5mm in diameter. Well that is it for today, I am pretty tired. I have been moving alot more lately. Love to everyone. Ayden

My New Blog

My Uncle Gary put this blog together today and showed my Dad how to post. He hopes that Mom and Dad will use this to keep the family updated. Later in the weekend Uncle Gary plans to update my first day pics, and have links to more photo’s other family members took.

The Day after my Surgery

Today is Thursday, the day after my surgery. Michelle, my nurse is really nice. So far I am doing ok. I sleep a lot and I am on a lot of different medicines. Dr. Langley talked to Mom and Dad and told them that I may be able to have my chest sewn up tomorrow, if everything goes ok.