Ayden

I'm still here !!

2009-07-08T06:58:00.000-07:00

Well its been a few months since I last talked to everyone. Since my B-day things have been a little rocky. I went back into the hospital on May 20th with the same problems I was having back in November/December last year. I only had to stay for 11 days this time. They did another cardiac cath and put in 44 more metal coils in my chest. I don't think there is any more room in there for any more. I ended up being sent home with a chest tube, but it came out only a couple of days after being home. I got really sick that following week end and almost got sent back to the hospital. My mom and dad worked very hard to keep me hydrated, healthy and out of the hospital. After a few scary days with a fever I started getting better. The most amazing thing happened then. When I started getting better I started eating and now I am eating everything in sight. Guess what, I also am up to having 6 teeth. I have all four of my front teeth, plus 2 molars, one on my upper left and one on my lower left side. I am working on gaining weight and then maybe I can get rid of this G-Tube. I had a check-up yesterday in Eugene and although I am showing some fluid build up they are going to let us try and take care of it with medication. So no chest tube this time. Well I will try to keep everyone up to date. I appreciate all your thoughts and prayers it has helped a lot. Love Ayden

1 year old

2009-04-26T22:00:00.000-07:00

Well, I made it. I am a whole year old. I had the best birthday. We had a big barbecue at a nice park, on a nice day. All my family showed up, plus I made some new friends. I got my own birthday cake, which I had fun with. I got lots of presents, which was nice. Thank you to everyone who came. I also got a new tooth in. My upper left front tooth is poking through the gum, so now I have 3. I still doing really good. I have a couple of doc appointments coming up, one in Eugene, and another in Portland. Nothing major, just stuff to do with my Mickey, not my heart. My heart is doing great. Mommy and Daddy will put some pictures of my party on here soon. Well, just thought I would drop you all a line. Love Ayden

Home Sweet Home

2009-04-09T23:18:00.000-07:00

Well, Mommy, Daddy and I got out of the hospital today, after just two days. I didn't even know that was possible. I thought it was mandatory that you had to stay for a week or longer, being as how every other time but one has been that way. LOL. Big brother was happy to see us, I sure missed him. He is my best friend. Anyways, I am a very happy guy, who no longer has a garden hose growing out of my nose anymore. My cheeks are already getting better and I am just a bit sore from the surgery. The area around my MIC-KEY (G-tube) is sore, especially when it gets turned. Mommy and Daddy are being really careful picking me up and if they hurt me, trust me, I let them know. We are probably going to go get pictures done, sometime around my birthday, which will be awesome. Just gotta give my cheeks some more time. We are also going to have a bar-b-q for my birthday, starting about 1 pm. Everybody who wants to come see me is invited. If you are going to come, please call Mom or Dad at 541-860-5986 to let them know. We would love to have you. If your looking to get me something for my birthday, any clothes or pj's with button up fronts, 12-18 months will work, but no zippers. Onesies are also good or you can just get me diapers, size 2 or just wipes. Well I need to sleep to mend. Love Ayden

I look like a turkey!

2009-04-07T18:13:00.000-07:00

Well I had my surgery today and everything went really well. The procedure took less time than it did for me in post-op and the recovery room. Like I said, this thing in my tummy looks like a cross between a water spigot and a turkey timer. It has kinda the same connection as my NG tube, but the nice thing is that it disconnects from the button that is on my tummy. I don't have to be hooked up all the time and it also needs to be washed once a week. We hopefully will be leaving on Thursday, if everything goes well. I can't have any food today but tomorrow, we are going to start working on getting back up on my feeds. So anyways, wish me luck. Love to you all. Ayden

Another Surgery. What is that, like 4!!!

2009-03-31T01:11:00.000-07:00

Just me and my big brother hangin out, watching the Spongebob!

Well, the time has come for me to have another surgery. This one has nothing to do with my heart though, believe it or not. This surgery is to place a G-tube into my stomach to feed me, instead of using that stupid NG tube in my snoze. Once the G-tube is in, the other tube goes buh-bye. Then everyone can see how much cuter I am, without the dang tube getting in the way. Also, Mommy says we will finally be able to get proffessional pictures done. This procedure only takes about an hour. It is going to be done next Tuesday, April 7th in Portland. They could of done it at River Bend in Springfield but with my heart problems, well better to be safe than sorry. But I do not plan on being there for very long. A couple of days tops. I am drawing the line, putting my foot down, closing the door, whatever you want to call it. Can you believe it, I will be one year old next month. I still don't know what I am going to do yet, but the trip to Vegas I wanted to do I think is out now. Dang!!! Ah well, Dad's birthday is exactly one week before mine but we are not celebrating it together. I will let everyone know in the coming weeks what we are doing for my party. Well I will talk to you all later, I have been a little under the weather lately and I need more sleep. Love you all, Ayden

Hello!!!

2009-03-18T07:15:00.000-07:00

I just wanted to say hello to every one and give an update of whats going on. I have been struggling with the eating thing. My parents and the feeding specialists decided it would be in my best interest to get rid of the tube in my nose. Instead I will have a G tube which is a feeding tube surgically implanted into my stomach. It sounds worse than it is but hopefully this will help my esophagus heal and I will be able to swallow food a lot easier. After the new tube is in they will do another test to check my swallowing techniques. I will finally be able to get rid of all that tape that irritates my face. Yeah!!! On a brighter note I have gained a lot of weight. I am 14lbs and 5ounces. The doctors are very happy with my weight gain and they even discontinued some of my medications. I am very happy. I smile and laugh all the time. I am rolling over and sitting up I even have a few teeth. I love you all and thank you all for your support.

Feeling like a million bucks!

2009-02-25T23:37:00.000-08:00

There is some meaning to the title. Every insurance policy has a lifetime cap for each person on the policy. On Daddy's, it's a million bucks and yup, I have hit it. Anyways, I am doing really good. I have only had two problems since the last time I wrote everyone. I had a head cold for a while, no fever or other symptoms, just real congested. But I am over that. The other thing is kinda embarassing. I had really bad diarrhea for a few days, but I think I am over that too. This did cause me to loose a little weight, but I am hoping that I can put that back on quickly. I have not been doing the bottle, Mommy and Daddy gave up, but I have been eating toddler food like a champ. I think this has helped me, because I got my first tooth Sunday. It is on the bottom, on my left side. It's just barely poking thru, but it's there. I love the Gerber finger foods, especially the cheese and other flavor puffs. I would eat those all day if they would let me. I have also discovered that I like pears, avocados, ranch dressing, and some Gerber baby foods like ham in ham gravy and chicken in chicken gravy. I am barely throwing up anymore and I am also taking 27 calorie formula thru my tube feedings. I am not on breastmilk, it's just water and powder. I also love to drink stuff like cran-ras juice, pop (not too much though) and other juice. I will get Daddy to post some pics of me on here in the next few days. He has some of me that he says I look like big brother. Anyways, I love you all and I am sorry it has been so long since you heard from me. I hope you all have not forgotten about me, because I have not forgotten all of you. Love Ayden

So far, so good

2009-01-22T21:46:00.000-08:00

Well I made it a whole week without any real problems. The only problems I am having is that I am spitting up a bit more because Mom and Dad increased my calories in my formula from 24 to 27, and they are also trying to get me to drink from a bottle, which I don't like. But can you blame me, back when I was first hospitalized, the nurses would give me a pacifier every time they were going to poke me with a needle. So now, I want nothing to do with any kind of rubber nipple. But Mom and Dad are trying to get me to try all kinds of different baby foods, drinks and even a sippee cup. I have a bunch of doctor's appointments coming up and I also have some specialists who are trying help me with bottling and eating, so I am going to be busy. Well here are some pics of me being my cute self. Enjoy them. Love Ayden

Light at the end of a really long tunnel

2009-01-12T16:21:00.000-08:00

Well here it is, the news everyone has been waiting for. I am finally going to get discharged, on Tuesday. This has been a slow, slow process and I am finally getting to leave. Dad has been here with me the entire time and Mom, on her days off from work. There is alot of stuff that has to be done, so bear with Mom and Dad about coming to see us. I am still on a slew of meds, I am on a new, strict feeding regiment and I will also be getting help from outside specialists to get me to start drinking from a bottle and even maybe eating some baby food. On a bright note, I rolled over today for the first time. Mommy and Daddy and brother are so proud of me. I am getting to be such a big boy. Here are a few numbers to throw at you.

Total number of hospital days since birth: 127 days (IF I get out tomorrow!)
Total number of days I've been alive: 263 days (Including tomorrow)

That is almost half of my life in the dang hospital. That is 4 holidays, and both of my grandpas birthdays, and two aunts and an uncle's birthdays. Anyways, just thought I would let everyone know how this has affected my life and what was going on. Wish me luck. Love Ayden

I will get home someday :(

2009-01-08T12:21:00.000-08:00

So it looks like I have kicked the kylothorax and plural effusion problem (build up of fluid in chest cavity). I should be home sitting in the recliner and watching cartoons with big brother but, obviously I'm not. What is keeping me in the hospital now is my dietary issues. I keep puking up my formula and I'm not gaining weight. The doctors are not comfortable letting me go until I can gain weight. The worst part is daddy got really sick and couldn't take care of me. He was so sick he couldn't keep anything down. Thankfully Aunt Tricia came to my dads rescue and even stayed the night on Tuesday night until mommy could drive up and take care of me. Mommy got here at about 9am on Wednesday morning and sent daddy to Aunt Tricias to get better. In the mean time I have a fever but I don't think its anything serious. I also had whats called a Barium Swallow test they put some stuff in my tummy to watch how it works and they also got me to drink some of the stuff from the bottle. I liked the taste of that stuff it tasted better than my formula. The good news is the test showed that my tummy and intestines are doing great. My esophagus(throat) on the other hand isn't passing the liquid through very quickly it is hanging out in there. This could be a reflux issue so they are increasing my acid reflux medication. They also think I might have a hard time digesting milk protein. I am on yet again a new formula that smells really nasty but I think it might do the trick. Well that's a lot of stuff but we are moving in the right direction. I hope to be home really soon maybe early next week. I miss everyone so much. I will talk to you soon love Ayden.

Slow and Steady... Sort Of

2009-01-01T13:05:00.000-08:00

Well, I haven't had anything to really write about for about a week. Christmas was pretty uneventful. Santa came by and I got some cool presents, then after that, it got back to the usual drab. Friday, Grandma and Grandpa and Uncle Garrett and big brother showed up. I was pretty happy to see them. Saturday, Dad took brother and Garrett to the movies and Grandma and Grandpa watched me for a few hours. Later, after they left to go home, Mommy showed up, so I was happy again. Then on Sunday, Aunt Tricia came and saw me. I played with her for while. On Monday, Grandma Sam came up and saw me, and to hang out. She brought more presents for brother and I. On Tuesday, they started me on feeds at 20 ml/hour. Over the course of the day, they increased the feeds up to 25, then 29, and finally 32. I was on that overnight and did fine, but then the next day, I started puking up. This is not abnormal for me, but to be doing it on such a small amount is not necessarily good. The docs have been toying with my feeds and the amount. As far as my vitals go, they look great. If they did not, I would probably be having a relapse of my fluid in the chest. So for now, we just keep at this pace and hope for the best. Happy New Year everyone. Love, Ayden.

Pretty Happy Boy

2008-12-23T22:00:00.000-08:00

I am such a big boy!

Hard to believe there is a
car under that, isn't it!

Hi, did somebody order a Christmas Ham?

Peek-A-Boo

Well as you can see, I had a pretty good day. Unfortunately, Mommy had to go home today, to go back to work. It took her all afternoon to get there, cause of the weather. But she will be back on Saturday, weather permitting. Speaking of the weather, while we have been here, Portland has had more snow in the last week or so than it has seen at any other time in the last 40 years. Crazy! So, moving on, Mommy and big brother will get to see each other on Christmas Eve after Mommy gets off work and Daddy and I get to hang out in the dumb old hospital. But at least Santa is supposed to make a pit stop here Christmas Day, so big brother and I will get some good stuff. Hopefully, this weekend, I will get to see big brother, Grandma Penny, Grandpa Ron, Uncle Garrett, Grandma Sam and of course, Mommy! :) Well as far as my health goes, it's running it's course. I am on a slew of meds, including IV fluids. They have me on that, so the problem I keep having will heal and hopefully stop being a problem. I don't have any idea when I will be going home yet, but maybe by next year. :) Well, I am pretty worn out from being so darn cute. I want to wish everyone a Merry Christmas and that I miss them and love them. Love Ayden.

P.S. Check out my links for the Elf Dance. It may take a minute to load, so be patient. It is worth it to see my family "dorking out".

Back on 9, Unknown Direction

2008-12-17T17:39:00.000-08:00

Well, we got moved back up to the 9th floor this morning. Last night was rough for a while at one point. My chest tube clogged up and wouldn't drain. Mommy fiddled with it and got it to start draining. Then we had the nurse come in because it stopped again. She changed the connector on the tube because it had a clot in it and lo and behold, immediately 35 mls drained out in like 10 or 15 minutes time. After this, I started to do alot better. I am still having good wet diapers when they give me the diuretics. I have also been doing quite a bit better as far as being awake and happy. Today, Santa Claus was at the hospital and I got to see him. I also picked out a present for big brother. I know he will like it. Well, we are just going to play it by ear for the next few days and hopefully we will get to go home soon. Wish me luck. Love Ayden.

This sucks!

2008-12-13T13:12:00.000-08:00

So, On Tuesday I was moved upstairs to the 9th floor. I was doing ok, but my urine output has slowed up considerably, which is not good. I was switched to all oral medications except the Ativan. Apparently, messing with changing them and also changing from one drug to another did a number on my system, because Thursday morning, I was having problems with getting rid of the fluid and also I had lots of phlegm that I would swallow and then cough it back up, which was not good. This made me really upset and cranky. So Friday night, I started breathing heavier and at 1:30, they did a X-ray. They also gave me a IV dose of Lasiks and that helped me pee, and get some of the fluid off. I was still having problems with breathing and my x-ray showed a build up of fluid on the right side. Guess what happened next, yup a trip to the ICU and a new chest tube. Well it is now Monday and things have gotten even worse. I lost my Picc line which is the only IV that I had and it took them a very long time to even get that. They are trying to get a new line in lets hope it works. I have had a fever off and on for the last day or so and now they started me on antibiotics, to catch it before it gets bad hopefully. And to add insult to injury, big brother is sick with strep throat. This week has been great so far and it is only a day and a half into it. Well I gotta go. Love Ayden

Ho Ho Ho Merry Christmas Ayden Clause

2008-12-08T04:53:00.000-08:00

So I've had a great last couple of days. On Saturday, I got to see my Grandma Penny, Grandpa Gary and Carolyn. I was in a great mood all day, smiling and playing and laughing. I was still on the SiPap machine, but the docs wanted to start weaning me off of it, so they started doing that periodically. They would put me on the high flow nasal canula for a hour or two, then put me back on the SiPap. Every time they did that, I got really angry. But, by Sunday, I was off of it completely and I have been doing great. My chest tube is not putting out barely any fluid and my last X-ray looked great. They have got me on IV feeds only and some oral meds, but that is all that goes into my tummy besides water. Sunday, I got to see Grandma Sam and she brought me a little Santa oufit. I only got to wear the hat, but even then, I looked pretty darn cute. Well, the docs were talking about possibly moving me upstairs on Monday. Hopefully that will happen, because that means that I am closer to going home. Keep your fingers crossed for me. Love, Ayden.

A little bit better, but not out of the woods yet!

2008-12-05T23:11:00.000-08:00

So, I haven't written in a while and thats because the nurses and docs have been keeping me hopping. They've given me several types of diuretics, including diarill which works wonders on me. Since I have been getting that, I have been getting rid of fluid like it was nobody's business (except mine). After having a X-ray and a ultrasound done yesterday, Doctor Langley decided to put a chest tube in my left side because of a large effusion I had. They did it this morning and so far, I have had about 90 mls come out of it. Also I finally got to see big brother today for the first time since Friday of last week. Man I missed him. He was being his usual goofy self. I have been getting Ativan when I get cranky and that does wonders for my attitude. I was playing and kicking and smiling at Momma and Papa and Aunt Tricia tonight after getting that. I am looking forward to getting to see my grandmas this weekend. Overall I am better but not even close to going home. Well gotta go, Love Ayden

Doing ok, but more stuff to be done

2008-12-02T15:23:00.000-08:00

Well, Monday night, Mom and the nurse gave me a bath, which made me feel better afterwards. I was the most active I had been since I was at home on Thursday. I was smiling and laughing at my goofball dad and kicking my feet and playing with my toys. They put me on a high flow nasal canula, which provides humidity to my nasal passages as well as O2. I was able to breathe easier after this and not have to work as hard, so I was less tired. This morning, they had to get blood, so I think between that and trying to get a IV started because the other one I had blew, I got poked at least 5 or 6 times. Then they tried to get a line in through my groin, which was a sterile procedure, but all that ended up being was a arterial line through my femoral artery. So it is good for blood draws, but no meds or other fluids through it. I was still in a good mood this morning because I got some much needed sleep last night. I also had another Cardiac Catheter done this afternoon. They were going in because I still have some narrowing in my Aortic arch and also what they call collateral blood vessels in my lungs. To fix these, they put tiny coils on them. I went in for this at 2:30 and did not get back from this until 11:00 last night. The first few hours was them getting a PICC IV started and giving me the drugs to put me under, so they could this. When I got back, the nurses gave me Morphine for the pain. Well I really need some sleep, so I will talk to later. Love Ayden.

Good mood, weird day.

2008-11-30T19:50:00.001-08:00

So this morning, they did a X-ray like they always do. Well the results showed that the effusion on the left side was almost gone and that the right side had just a little bit. They decided to put a chest tube in anyways to get rid of the right effusion. Most of the liquid was gone due to them giving me extra Lasiks and a dose of another diuretic. My lungs still kind of looked patchy with fluid. They put in the tube and I was very unhappy for a while, but they gave me a little Morphine to calm me down. After that, I did ok most of the day. Later on, it looked like I was breathing pretty hard still. They had done a ultrasound and haven't got the results on that yet. They also did another X-ray and that looked great, just the stuff on my lungs. So I just need to get rid of the goo in my lungs and then I should be feeling alot better. Oh yeah and once they get rid of the tube too. Anyhow, time to get some more sleep. Love, Ayden.

Totally not wanting to be tubular!

2008-11-30T07:06:00.000-08:00

So, they did an X-ray on Friday when we got here, and then did another one Saturday morning. The docs said they looked pretty much the same with only minor differences. Then I had a bad episode of respitory distress in the afternoon. It took me awhile to calm down and Mom and Dad were very scared. The docs did another X-ray and said that the effusion on my left side had gotten bigger, therefore they would have to ship us down to the PICU and have a chest tube put in. They were going to call in Dr. Langley but decided that I was not in dire need of the tube right away and that I was for the most part stable as far as my vital signs go. So they decided to wait till Sunday morning. If this works out, we should get moved back upstairs today, I think. Anyways, just thought I would let everyone know what was up. Love to everyone. Oh yeah and GO DUCKS!! (that was for Uncle Gary and Grandma Sam)

So much for a good Thanksgiving

2008-11-28T22:45:00.000-08:00

Well, on Wednesday I started having breathing issues and so Mom and Dad were watching me carefully. On Thursday, Happy Thanksgiving, I did not get better. So Dad called Doernbecher's and talked to a doctor. We tried giving me a extra dose of Lasiks, which did not work. So then Mom and Dad and I took a trip to Mercy's ER and got a X-Ray. They also got a IV started and gave me Lasiks through that. They let us go home with the intent on us going to the Doctors in the morning. So this morning, Dad took me and the doc examined me and talked to the doctors at Doernbecher's. They decided that the best plan of action involved Mom and Dad and I hopping in the car and driving back to Portland, again!!!

So here I am, sitting a hospital room, with a IV in my right leg, and another pleural effusion (that's doctor talk for build up of fluid in my chest cavity) on my left side now. They are giving me IV Lasiks, and saline through the IV and also giving me Aldactone (another diuretic) and potassium orally, along with my acid reflux med and methadone. They hope that giving me the extra diuretics will get rid of the extra fluid in my chest and hopefully will prevent me from having to get a chest tube put in. If this works out, keep your fingers crossed that it does, I hope I won't be here for very long, but if history repeats itself, I will be sending pictures of me wearing a Santa hat to everyone. NOT!!! Anyways, once again, Mom and Dad have had to drop everything, like work, to deal with this. I want to thank both Grandma's for taking care of big brother and also being there for Mom and Dad! Anyhow, wish me luck and I will be home before you know it. Love, Ayden.

Home Sweet Home

2008-11-23T00:44:00.001-08:00

Finally, after what seemed like forever, Mommy and I got home on Friday evening. So far, I have been doing really good with everything. I stay awake alot more, I am smiling and talking and playing with my toys alot, finally just getting to be somewhat of a normal little guy. The only cruddy thing is that everyone who wants to come see me has to get a flu shot on doctor's orders. I can't get sick at all. It would not be good. Anyhow, I am really tired and I am gonna hit the crib. Love ya all, Ayden

Droppin this place like a bad habit!!!

2008-11-21T10:25:00.000-08:00

In the words of Jar-Jar Binks, "Weesa goin home!" Mommy and I are finally getting to go home. Did you know, by law, Mommy should have changed her address on her Driver's License because if you reside in one place for one month or more and it's different than whats on the license, you have to change it. But it is okay cause she knows a few cops. ;) Anyways, I am in the best mood that I have been in in a long time. I am on less meds than I was after my surgery and also after I got discharged on Friday. Anyways, I also have more tests and two doc appointments scheduled in the upcoming months, so I will be very busy. Well got to finish packing. Love you all and thanks for your help. Love Ayden

This is getting really old!

2008-11-18T10:58:00.000-08:00

So, I got discharged like my last blog said. Dad and Big Brother show up on Friday night and I thought things would get better, but my body said otherwise. I was very grumpy and pukey all night, just ask Dad. He slept with me in one bed, so Mom could have a break. Saturday, I was pretty much the same. Nothing really made me happy, and Sunday, the same. I was somewhat better that night, due to getting some Pedialyte that Grandma Sam brought me. So Monday rolls around and we go in for the tests. My X-ray looked great, my blood work looked great, but the ECG worried them. Not anything to do with my heart or anything, but more with my blood vessels. So that along with my grumpiness over the weekend made them decide to admit me back in the hospital. At first, it was hopefully going to be for a 24 hour observation period, but now it sounds like it will be for a few days. They are taking me off all the diuretics, because they think I was getting to dehydrated and they also thought they were trying to ween me off of the Methadone to quickly. So once they have these problems figured out, hopefully that will be the ticket out of Portland. I think they should make a new Snake movie starring me, "Escape from Portland" I have the scars for the role already. Anyhow, wish me luck and thanks for all of your support. My whole family really appreciates it. Love Ayden.

Hopefully Home on Monday

2008-11-13T09:39:00.001-08:00

Well the doctor came in today and told Mom that my X-ray looked good, and that I would be discharged. But because we live so far away, he wanted us to stick around through the weekend and re-evaluate me on Monday. So, when we do get discharged, Mom and I will stay in a hotel and Dad and Big Bro will come see us after he gets out of school. I am so looking forward to this, as is everyone else. I really miss being home. Well just thought I would let everyone know. I gotta go pack. Love Ayden

Good news!!!!

2008-11-11T13:26:00.001-08:00

Well the last week has been stressful. There has been a lot of fine tuning going on and I think it has paid off. Today the doctors have removed the chest tube. This is a very big step. If there aren't any problems within the next couple of days I might be able to go home!!!!!! I am going to keep this update very short and not bore you with the painful details of this past week. I just wanted to share the good news. Love Ayden.