Can't Get A Break.

I was doing a lot better Tuesday when they changed my chest tube. Things were looking good the rest of that day. Wednesday morning rolled around and my chest tube was not producing anything yet again. Mom did not get excited this time instead she thought there was probably another clog. Well my breathing got worse through out the day and it felt like a bad case of deja vu. They checked my chest tube and said that I didn't have a clog. My x-ray showed a build up of fluid still on the right side but in a different location where the tube wasn't reaching. Apparently I developed a pocket and all the fluid was now building up in there. On Wednesday evening my breathing had got increasingly bad. At about 3am Thursday they finally moved us to the intensive care unit with a plan to put in a new chest tube. The surgeons were so busy today that I didn't get a new tube until 4pm. By that time I was pooped. Luckily I am a fighter and the only breathing assistance I needed was a high flow nasal cannula with some warm air and a little moisture. I have been doing better since they drained it. They removed 230ml from my chest. that is a lot of fluid for such a small guy. On a brighter note I did get to see my daddy. I missed him so much. He even got to hold me. I was a bit cranky but who can blame me. Well I'm a bit tired so I am going back to bed. I'll keep everyone posted. Love Ayden

I hate chest tubes :(

Well I had a really rough day today. It all started last night, my chest tube hadn't drained all day Monday. My mom was optomistic that maybe the IV meds were working and they might take the chest tube out and we could go home. Unfortunately late last night I started having trouble breathing. The doctors waited a long time before they got an x-ray it felt like forever. Finally after about twelve hours of very heavy breathing, which the doctors describe as equivalent to running a marathon,they replaced my chest tube. It had developed a huge clog. The doctors drained 150ml's from my chest. I started to breath a lot easier after that. Imagine running a marathon for twelve hours. I was very tired afterwards. I have been sleeping all day. This brings me to some more bad news. The IV meds have not worked therefor I am going to get a cardiac cath done and they are going to try and figure out if there is anything they can do inside to help me out. I am no longer aloud to eat anything they are stopping all traffic in my tummy. I am getting all my nutrition through the IV in my femoral artery. That was almost a problem today too. My IV, the only one I have, clotted and they couldnt get any blood from it. Luckely some very skilled nurses rethreaded it and got it functioning properly. Wow that was a lot of stress for my whole family. Speaking of family every one saw my super cute video taken by my beautifull aunt Tricia she is always very nice to me. I got a lot of visitors this last week it was great. I got to see my Grandma's and Grandpa's and my uncles and big brother too!!! I really miss daddy. He is comming to see me tommorrow that makes me very happy. I love my family so much...Hugs and Kisses. Love Ayden

Busy little Bee

Well I have been extremely busy this last week. I am still in the hospital and they are still trying to find a way to make me better again. When I got here last week they put a tube in my chest to drain off the fluid collecting around my right lung. I still have the tube in my chest and it is still draining fluid. Apparently during my last Open Heart Surgery there was a duct that was cut. This particular duct is attached to the stomach and all the fat that you eat gets sorted out, sent through this duct, then the fat gets dumped into your heart. Well the fat is the liquid that is pooling its self around my lungs. I am on my very first non-fat diet and guess what? It tastes gross. I still am having a lot of drainage so they have me on a medication that is going to restrict the flow through that duct. I hope it works. I had a few bad days they have had a really hard time getting an IV started and they ended up poking me over 23 times in a span of only 2 days. After that I had enough so they started whats called a central line. Its basically an IV in a major artery. They gave me some really good sedatives that day. Well its going to be a few more days until I find out if this stuff is working. I will have an echo cardiogram done on Monday and hopefully all is in good working order. If it is I get to go home. If not they are talking about doing an angioplasty and seeing if that relieves pressure off of that duct. I am so glad that every one is helping my mommy and daddy they look very stressed. I know that with all your thoughts and prayers that I am going to be out of here very soon. Thank you so much for everything. Love Ayden

Back in the Hospital!!!

Well, since Sunday, I have been really fussy and Mom and Dad have been very stressed out. Monday I was in a good mood all day and Tuesday I was so-so. Wednesday I was right back at the fussy stage again and I was having trouble breathing. Daddy decided to call Doernbechers and the doc there told him to take me to the emergency room in Roseburg and have them check my vitals and get a chest x-ray done. We did that and I had fluid in the right plural cavity behind my lung. Mercy called Doernbechers and told them and they wanted me up there ASAP. So I got to go in a another ambulance doing about 85-90 all the way to Portland. Dad and big brother were behind us most of the way. After they examined me, they decided to put in a chest tube to drain the fluid out. They did this and shortly after doing so, I had like a 130-140 ml come out. They said the stuff is basically just really thick breast milk, and this is actually pretty commom after the surgery I just had. As of right now, I am doing okay. They are starting me on a different formula, one that will not cause what happened to happen again. Anyways, so we are back up here again, hopefully only till Sunday. Well wish me luck and I will keep you updated. Love Ayden.

Such a big boy!

These accommodations are so spacious!This is way bigger than my last pad!
My first night in my new crib!


Well, I spent my first night in my crib last night and I did all right. I was fussy a couple of times, but the crib is at the foot of Mommy and Daddy's bed, so I am not that far away. I had a doctor's appointment today and I weighed almost 13 pounds. Mom and Dad don't have to weight me everyday like they used to, so we were curious as to how chunky I was. The doctor was very happy with how I was looking and doing though. I also have eaten from a bottle a few times now. I have not been doing this since earlier this summer. Mommy and Daddy are happy that I am trying again. Anyways, I gotta go watch the new Indy flick. Love you all, Ayden

Home at last!

Well I got to go home on Thursday. Boy were we glad. After being in Portland for 10 days, I wanted out of there. I got home, safe and sound, but with a slew of medicines to take. I also have a couple of doctor's appointments soon. When we got home, we had no heat, which sucked. Mom probably won't like me using that word, but oh well. Mom and I slept in Papa's recliner all night and Dad and big brother slept in Mom and Dad's bed because big brother's room was colder than the freezer. They got the heat fixed this morning so all is well. I probably won't leave the house for a few days, don't want to get sick and the weather has been really cold down here. Well I gotta go to bed. Love Ayden

Busy last 2 days

Well, Tuesday morning, I yanked out my NJ tube. The NJ stands for Naso-Jejunal or small bowel. I did have a NG tube which a Naso-Gastric or stomach. They reinserted another tube into my stomach and left it there. They also took me off the continuous feeds, which has helped big time with my uncomfortableness. I am back on the feeds I had before I had surgery and I am not having hardly any problems with gas and I have not spit up once, knock on wood. I am not hooked up to any monitors and I don't have any IV's. All my meds are through my tube, and I have been in a great mood. Yesterday, they did 2 X-rays, 2 ECG's and an EKG. I am going to be on some new meds for a little while, but other than that I feel good. Best of all, I may get to go home tomorrow. This makes everyone happy. I already have two doctor's appointments scheduled for after we get out of here. I have been smiling, laughing and cooing quite a bit and nowhere near as fussy. Mommy and Daddy are very happy with my condition. Well, gotta go, gotta get back to watching Iron Man. Love Ayden

Good and Bad Day

Well we'll start with the good news. I have been upgraded from the ecomony to the luxury suite i.e. from the PICU to the Inter. CU. I have a IV, my feed tube and the sensors for my heart rate and my Pulse Ox. That's it. Now the bad news, I had some fluid coming out of my right ear on Saturday, which filled my ear canal. The ear doc came and checked it and got me a prescription for ear drops. Today he cleaned out my ear and said that my ear drum is perforated near the bottom. He took a culture and hopefully I will get a antibiotic for it tomorrow or Wed. As of now, I am very grouchy and gassy and overall very unhappy. Mom and Dad don't know why, but are trying to help as best they can. Anyways, gotta go to bed, they got me scheduled for a diaper's load of tests tomorrow. Write me back if you read this and are thinking about me, I would love to hear from you. Love Ayden

Teeter-Totter Day

Well today kind of started out like Thursday did. I was really fidgety and could not get comfortable. It did not matter what they gave me, I would not sleep well. I was back on the nasal canula and they decided to put me on the CPAP machine. Well they were finally able to figure out what was wrong. I have a NJ tube, which instead of going to my stomach, it goes through it and into my intestine. They had me on 35ml feeds/hour and my body could not hold that in the intestinal tract. If it had been in my stomach, I would have been fine. So they got me back to 25ml/hour and I was fine after that. I had my chest tubes taken out today and also I am on room air, no canula or CPAP. They are also planning on taking out my Central line in my neck and just using an IV for me. Mommy got to hold me, for a while cause I got gas and then I felt better. I did finally go number 2, I haven't since Tuesday. That felt better. Anyways I will talk to you all later, Love Ayden.

Another good day!

I had another good day today. I am not taking too many medications for pain, just a little morphine. I had my catheter taken out, as well as one IV and one arterial line. I had my eyes open alot today and got to see some of my family. I sure do miss big brother. As of right now, I am off the CPAP machine and just on a O2 canula. They are talking about possibly taking out my chest tubes tomorrow. A bit of bad news though, I might have a middle ear infection. The doctor looked in my ear but could not see the ear drum, so they put me on drops and will check it on Monday. I also have been getting food, right now I am at 20ml per hour and the goal is 35mls. Well I am going to take a nap. Talk to you tomorrow. Love Ayden.

Much better day today

Today was much better. I was doing really good earlier this morning after they were able to calm me down. I was on the Ativan and Tylenol to calm me and the CPAP was at a 100%. As of now, I have not had any Ativan since this morning, Morphine since earlier this afternoon and my CPAP is at 45%. The nurse is still giving me Tylenol, but the main thing has been checking my lungs and sucking out all the stuff that is in them. I have only been irratible when she messes with me, other than that, I have slept all day peacefully, which I needed cause I was beat. This was good for Mom and Dad cause Mom did not sleep that good the first night and Dad has been up since 2:30 this morning. They did take naps later on which is good. Anyways not much else to report except that I am not on any other medicines, which is good. The doctors are happy with how I look and they should start my feeds back up soon. Well talk to you all later. Love Ayden

Hard First Day

Well, the first day after the surgery was a rough one. I was doing very good overnight and about 3:30am on Thursday, they decided to extubate me. This was good, because I was not happy with the tube shoved down my throat and being awake. After this, I did ok for a while, but then I got really restless and inconsolable. The staff told Mom and Dad that I would be this way but Mom was convinced that there was more to is than just that. They tried giving me Morphine and Tylenol, which did not calm me down. One time, I opened my eyes and was looking at Mommy and Daddy, for a good half a minute and then I just started crying. They tried alot of different things to calm me down. They tried to up the dosage of the Morphine, they rewrote the order so they could give it to me once an hour. They also tried Oxycodone, with no luck. They gave me another Diuretic, which was supposed to help get rid of the fluids in my abdomen, but that did not seem to be the problem. They also gave me Activan, which I had been on before when I left the hospital in May. This is not so much a pain killer as it is a relaxing medicine. This seemed to work. They also gave me hydro-chloride, which also is a pain killer too. The day nurse did not seem to think that anything was really wrong, which had Mommy pulling her hair out, but fortunately the night nurse is on her game. She agreed with Mommy that it looked like I was having trouble breathing, so they put the CPAP machine on me. They were possibly going to reintubate me but they gave me some time to see how I did on the CPAP and so far so good. I am doing fairly good right now. Well I have to go back to bed. If they ever found out I was out here typing away and not in bed, I'd be in big trouble. Love Ayden

Out of Surgery... So Far So Good

Well I am done with surgery and I already look better then I did with the first two. Not only did they do the Glenn, Dr. Langley also did a Aortic Patch, which is when they make an incision in the Aorta to widen the diameter and then put a patch over it to keep it open. This was kind of unexpected to Mom and Dad. They also thought that my tricuspid valve was leaking, but they figured out that it was not. They are hoping to have me extubated within 12 hours, which is awesome, but I will definetly not be happy when they do it because they have to wake me up. The nurse also said that I will probably have a wicked headache due to higher pressure to the head for a few days. This will also make me grumpy. But I am moving my right foot already, which is a good sign. I just hope we can go home sooner than last time. Well, I just want to thank all of you who were hoping and praying for me and after we are home and feeling better, we will have to see you all. Thanks again, Love Ayden