One very sick tired boy

I have been not able to update much on my blog lately. I haven’t had the strength or energy. I am sorry for all people how like to view it to see what is going on. My belly is large once again, I would like to hold off on getting tapped it does feel good to have my stomach smaller for a few hours but it doesn’t last long enough. The Doctors have been concerned that I haven’t been getting much nutrients so they stuck a feeding tube down my knows. That takes a lot of getting used to.

I know there is more I could say right now about what is going on but I am falling back asleep as I write this. God is so good at providing for our needs and is still on the thrown In control of every detail I am going through.

Another upgrade

It is definitely not what you know. It is who you know. The nurses here are watching out for me so when the largest room on the floor became available again they were able to move me into it. So now my mom has a fold out bed instead of a cot. We also have a better view of the valley. Another great thing about switching rooms I have new walls to focus on. It is a great way to be distracted for a bit longer.

Thank You Lord for open amazing doors and opportunities!

Nothing lasts forever :-(

Today was a sad day. Last september they when my veins were having all of the problems and they kept poking me to try to get IV’s started they finally gave up and I got a PICC Line in my right arm. Oh it is a wonderful medical invention, you can use them like an IV and Push fluid in and but you can also Pull/draw blood out of the same line. I have wanted to keep it very happy and working for as long as possible. Well a few days ago it started to not allow us to draw blood, you had to be in the right position and hold your tongue just right and maybe it will work. Today the decision was made to replace out my PICC line so that it doesn’t become infected or anything. They don’t want any new bugs growing in me.

So I was sent to Angio and they were able to install a new PICC line in my left arm. The best part was that they were able to install the new one with just one poke. Yeah! Now I hope I can keep this one happy for so long like the previous PICC.

They wanted more

As much as I hate being tap they sent me back to take more off. They were going to do it sooner but I got them to put it off for a few more days but I couldn’t keep them away forever. So once again they took 4.8 liters off. Then put me on lasix ( I like that stuff) which make me move rapidly (bad when your body hurts) to the bathroom. They chart everything in the hospital how much in and how much out. So for one shift or so at least until it wore off I passed something like 3700 milliliters, which is like almost 4 liters. So in four days I have lost about 17 liters of fluid and roughly 25 lbs. And my belly is still bloated. My legs and ankles feal a lot better. They were very swollen when we came into the hospital and now they are almost normal again.

Now that is a full belly

Today right off the bat we went to get a ultra-sound to get TAPed again :-( But thankfully this time was less painful then the last one. They took 8.5 liters of my belly. It is sad it will only be flat for a few more hours then it will be full again.

Honey I'm home...

Well am back in the hospital. Again... My levels are still really high now to the point were doctors are concerned that something else might be going on. So right off the bat we get to go to angio and have a 2 nasty tubes changed in me.

Guess we will wait and see how long this stay is going to me.

Now for my next hobby.

I have decided to pick up another hobby too distract me. I want to set up an fish aquarium. but I know that if it isn’t a big tank and with a bunch of fish in it I will probably get bored. I also need to make it easier so that I could clean the tank and it won’t become my moms burden.


So I have decided that a 2,000 or so, if big is good then really big must be even more fun.

I guess fun is relative...

To somebody who is at full health and able to be hired by someone to take care of their big tank is more practicle then setting up your own big tank. In my 2 bedroom apartment where would I even put it so it can be enjoyed. So yes on the previous post I hope you were able to catch a bit of the sarcastic humor.

When I was young 2nd or 3rd grade my parents got me a small 2 gallon fishtank. I thought oh that would be fun again set it up and put a beta or something in it. Well upon further inspection it’s age is starting to really show, 20+ years I think we might have gotten our money’s worth on that one. There were heat/stress fractures showing in the plastic, the heater died, while we were setting it up. How sad it won't run forever.



The other thing my mom hated the idea of cleaning tanks. So we were looking and what do you want in it. And as we listed fish that would be fun to watch suddenly 2 gallon was not big enough. I was planning after surgery to start a 10 gallon tank. But when you have gift cards “Burning a hole in the pocket”, It is hard to pass up a deal. My mom didn’t want a big tank, she wanted something like 5 gal or less thinking she would have to move it to the kitchen to clean it. After talking to sales people and others (internet), and my limited prior experience with 10gal tanks you don’t move them once they are put in place cleaning and everything happens there. Also with a bigger tank if you don’t fill it with lots of fish they don’t need cleaned as often. She liked that idea. What started out as going to be a small project has now changed into something much larger, then I even expected. It is a great distraction, and a lot of fun to watch. And take pictures of :-)

I wanted to introduce you...

I wanted to introduce you to the newest coleman family member.




His name is Kappa, isn’t he so cute :-)

Happy birthday Mom

She has given up on birthdays she says it her birthday it is her dad’s anniversary day for becoming a father.

But anyway...

Mom - “May the day of your navel festivities be felicitously joyous.”

I wanted to do something special for her but my belly got in the way. :-(
Stupid belly!

I also wanted to get her something but once again I am not running at full speed, or anywhere close. I was able to make her a book with her help of all the christmas cards we have done from 1978-2006. By my standard of what is good and what I wanted this book has issues, but it made her day an that was the important part.

All I need is one more... thing

It is sad how quickly I can get bored of things. And I will go off in search of that which will break up my day distract me from my troubles, only to fine out later that I am bored of that hobby as well.

When I was a small kid, people would always comment about how my toys were in pretty good condition or that I had so many. He is a spoiled, because he is an only child. Well that wasn’t true. My dad didn’t make a lot of money, so for several years we were living from paycheck to paycheck. And the “New” toys were often gifts from others. So when I did get it something it was special. I had to take care of it make it last. If I was careless and it broke we weren’t going to buy a new one.

My mom had this thing also (I didn’t know it at the time, but learned later) she would watch me play and see what I was playing with, and which toys were on the shelf not being touched. She would take the neglected toy and make it “disappear” for a while and replace it with one of the other “disappeared” toys. So because I hadn’t seen it for a while it became a “new” toy again. Using this technique it was easy for her to see over time what I liked playing with and what I didn’t so as much as I fought not wanting give my toys away she was able too “Clean out the closet” every now and then.

So now fast forward several years. I don’t have anyone looking over my shoulder watching me play. My “toys” are now bigger and more expensive. And upgrade-able or expandable become my favorite things on package labels, and the death to my bank account. :-) Only this much for more memory, this much for a camera filter, etc.

One thing I love doing, almost to the point where some might rate it as an addiction. I love finding “free” software on the Internet, it is almost like treasure hunting. I love being able to make the computer do more without spending any money. Some of my most favorite “utilities/tools” and killer apps, are freeware. Unfortunately the really good programs for video editing, or photography (digital darkroom apps) I haven’t found a free solution. Some come close to being that “treasure” I am looking for, but usually something is missing. Yes I know that there are places on the net I could go and download the program for free but I don’t like running pirated software because usually the sites that you have to go through to get the programs are not safe or child friendly.

So it is sad that I am never satisfied, always wanting one more this or that. I now know why it is good for man to work. Being sick and stuck in a chair most of the day. Can make you nuts. So I have tried all these different hobbies which definitely help pass the time. I have tried video games, movies, tv programs, photography (hard to find new subjects when the walls don’t change), knitting, crocheting, cross-stich, computer games, browsing the internet, blogging. And have gotten the same result. To much of any thing is still to much and leads to boredom. But maybe the next hobby will be different.

Update part 2

Well yesterday’s infusion lowered some of my values but not enough. So today I got to repeat yesterdays procedure as a 2nd attempt. I am so thankful I have a PICC Line, it has saved me from a countless number of IV pokes and bruises.

The cool thing about all of this unknown when it comes to numbers, and strength, and transplant concerns. I still know that God is in control of it all. Some might be quick to think that God doesn’t care, or he should have fixed it by now. But God has not abandoned me, He is not slow. If the miracle comes to fast I might not recognize it, if it comes to quick I might not appreciate it. Is that the reason behind all this time and sand? The promise land is just ahead, around the next corner. If I give up the fight now I and turn bitter and turn on God because it it the easy thing, I might never see how close I really was from being out this. Two weeks turns into 40 years.

Job 1:20-22
“20 At this, Job got up and tore his robe and shaved his head. Then he fell to the ground in worship
21 and said: “Naked I came from my mother’s womb, and naked I shall depart. The LORD gave and the LORD has taken away; may the name of the LORD be praised.”
22 In all this, Job did not sin by charging God with wrongdoing.”

All things work together for God’s glory!

As for me and my house: “We will serve the LORD our God and obey him.”

Update sortof

Well in some ways nothing has changed but in some ways it has. Still no news on a new liver. I wish I could say that I haven’t posted anything because of surgery but that is not the case.

I am continuing to get more and more swollen with retaining fluid in my belly, thighs, ankles and feet. It makes moving extremely hard and difficult. Lasix help a bit but it hurts the kidneys so my numbers which everyone is watching go up.

I had lab work done today and the numbers were elevated. My meld score calculated to somewhere around 30. Which is a very bad thing. Medicaid has agreed to pay for a second transplant as long as my meld was not over 28. (The doctors, already went to battle to get it raise to 28 they started out saying 25.) Because my meld was high they called me in to get an infusion. So I got to spend all afternoon in the hospital infusion lab.

Happy New Year!

Now we start a new year 2007!!!

What great things does God have planned for us this year?