Just like the famous Disneyland commercial "Joe Montana you just won the Superbowl what are you going to do now?" "I am going to Disneyland..."
"Micah, you are out of the Hospital (again), what are you going to do now?" I am going to go to The Rock Church and worship God!"
Yes as crazy and insane as that sounds that was my number one priority last night. I talked to some friends and they advised me it might not be the wisest but if you do do it, figure out and set your limit then cut that in half, so you don't over extend yourself to far. And wear a mask. I agreed that that was a good way to start small. So we arrived about 7:00 after the music had started (1st song), slipped in the back and Worshiped God! It was wonderful! I have missed worshiping with others! I was giving myself an hour so cutting it in half made it 30 minutes so when the music was over unfortunately we left. I really wanted to stay for the message also but I didn't want to over push myself and be back in the hospital again! So I will have to get the video or audio CD and hear it later. It also help motivate me to leave when I had to go to the restroom. (again :-)
It was also very hard (emotionally) for me because there is so many people that I wanted to see and talk to and thank personally for their prayers but I knew that I didn't have strength for that much. I can't wait till this chapter of my life is past and things can return to some sort of normalcy. And I can return to fellow-shipping and serving with my family. And able to Glorify God for what he has done in my life and how he has grown me over the last 2 months!!!
So for every one at the Rock last night I wanted to see and say hi to you all but couldn't. I want to say thank you! Thank you for your prayers, your love, and support, and worshiping/serving our Awesome God with me! There are great things happing here in our SLC valley that we are part of, and it is so exciting to witness. Not by our strength or ability but because of HIM!
"One life at a time, One world in our Lifetime!" Win, Build, Send.
Sunday, April 30, 2006
Saturday, April 29, 2006
Well I have some new news...
The hospital is kicking me out again. I have been to rough of a patient on everyone. (Or maybe some one more important needs my bed)
The Doctor is very hopeful about my levels in my liver. And the progress that I am have made. They still don't exactly know the cause of the infection. The guess is just the large amount of fluid retention.
So I am happy to be going home, but at the same time there is part of me that does like the hospital perks and will miss them. The movable bed feet up/head down, head up, feet up, makes it very comfortable, unfortunately the mattress is a bit harder then my liking, so it still gives me back aches. The other thing I really like is the extra large toilet, that in my swollen state of my legs I can fit on it more comfortably. But I think that I a small price to pay to not be woken up at 4:00AM to get some kinda drug.
So hopefully third time is the charm. I won't be coming back as a house guest for a long time. So in 53 days I have spent 28 days in the hospital and 25 days home.
The Doctor is very hopeful about my levels in my liver. And the progress that I am have made. They still don't exactly know the cause of the infection. The guess is just the large amount of fluid retention.
So I am happy to be going home, but at the same time there is part of me that does like the hospital perks and will miss them. The movable bed feet up/head down, head up, feet up, makes it very comfortable, unfortunately the mattress is a bit harder then my liking, so it still gives me back aches. The other thing I really like is the extra large toilet, that in my swollen state of my legs I can fit on it more comfortably. But I think that I a small price to pay to not be woken up at 4:00AM to get some kinda drug.
So hopefully third time is the charm. I won't be coming back as a house guest for a long time. So in 53 days I have spent 28 days in the hospital and 25 days home.
Friday, April 28, 2006
Good News / Bad News
Morning...
I am not going to say GOOD morning yet... I will have to see how we get through the next few hours.
It's not starting out so good. So let me write about the GOOD NEWS now.
The GOOD NEWS was yesterday! It started out a little slow and with not much change, but then after a little more time to wake and some additional prayer to join with all of your prayers, Micah showed some real change!! PTL!!
He got up! He ate his breakfast, ALL of his lunch, did some work on a video he is doing for his church, wrote one his Blogspot, joked the the nurses, had some friends in to visit, watched a movie with me, and most importantly, he felt good all day!! The doctor's good report at 6:00 was like the frosting on a cake (unlike that whip cream on that banana split!) The report was VERY GOOD NEWS! The colonoscopy showed his ulcerated colitis was clear (just lots of scar tissue) and there wasn't any sign of infection anywhere. The biopsys also showed no infection, and that the liver was doing well! Basically everything looked good and nothing was found to be bad or wrong! :-) What was bad was that the infection is still a mystery. Which brings us up to this morning. The doctor scheduled another test this morning...
BAD NEWS - 5:45 just try to get Micah moving at that time!! Not good!!
He's tired... He's starving... He is grouchy... And on top of that he is to drink a gallon of salt water! His stomach doesn't like this at all!! Micah is showing his first signs of an all out revolt. He is wanting to put his foot down!! And remember the size of this foot!! I am sure they would feel the aftershock on the other side of the world! He was beginning to show some signs of a child told to eat their peas!! Woa! Micah was about to show them a new side of him! Fortunately his mother was the only one who would witness this metamorphis. Instead he turned over and went to sleep again. Problem now for his mother is...
1. Let him sleep a bit longer to have him in better spirits, but behind in the amount of salt water intake needed for the test.
2. Keep waking him up and fight with him to drink more of the salt water and receive the full force of the anger that was building up just before he turned over to sleep.
3. Go back to the apartment and tell Micah: I Quit!
4. Sit here peacefully and pray and then type on the blogspot in the dark and try to put a smile on your face as well as mine!! Keep reminding myself, "this too will soon pass" and "all things will work together for good" and "I still love him and God does too!
I've got to do it now...
Brace yourselves! The earth may tremble now...
Pray for me...
"Micah, It's time to drink some of this..." 8:00
I needed some more help... I'll got ask a cute nurse...
8:18 am Go find a cute one!
8:20 am Oh Dear!! The technician is here in the room when I got back!! WORSE! The pill is here and Micah has only drank a cup and a half! :-( Breathe, Becky! I should have persisted! All he could have done is sent me home!! :-)
Well, he swallowed it with a salt water chaser... and it's off and blinking! We will be anxious to hear if it works. Please , along with us, that it will work despite the lack of fluid.
Now we wait... and dread the passing of this large pill... It won't be comfortable. :-(
He can't eat until noon and then it's only liquids until dinner.
I'll let you hear his view of this soon, and I will go find something to eat.
Please pray the camera works and there is no problem... with the camera or with Micah!
Becky signing off for now...
I am not going to say GOOD morning yet... I will have to see how we get through the next few hours.
It's not starting out so good. So let me write about the GOOD NEWS now.
The GOOD NEWS was yesterday! It started out a little slow and with not much change, but then after a little more time to wake and some additional prayer to join with all of your prayers, Micah showed some real change!! PTL!!
He got up! He ate his breakfast, ALL of his lunch, did some work on a video he is doing for his church, wrote one his Blogspot, joked the the nurses, had some friends in to visit, watched a movie with me, and most importantly, he felt good all day!! The doctor's good report at 6:00 was like the frosting on a cake (unlike that whip cream on that banana split!) The report was VERY GOOD NEWS! The colonoscopy showed his ulcerated colitis was clear (just lots of scar tissue) and there wasn't any sign of infection anywhere. The biopsys also showed no infection, and that the liver was doing well! Basically everything looked good and nothing was found to be bad or wrong! :-) What was bad was that the infection is still a mystery. Which brings us up to this morning. The doctor scheduled another test this morning...
BAD NEWS - 5:45 just try to get Micah moving at that time!! Not good!!
He's tired... He's starving... He is grouchy... And on top of that he is to drink a gallon of salt water! His stomach doesn't like this at all!! Micah is showing his first signs of an all out revolt. He is wanting to put his foot down!! And remember the size of this foot!! I am sure they would feel the aftershock on the other side of the world! He was beginning to show some signs of a child told to eat their peas!! Woa! Micah was about to show them a new side of him! Fortunately his mother was the only one who would witness this metamorphis. Instead he turned over and went to sleep again. Problem now for his mother is...
1. Let him sleep a bit longer to have him in better spirits, but behind in the amount of salt water intake needed for the test.
2. Keep waking him up and fight with him to drink more of the salt water and receive the full force of the anger that was building up just before he turned over to sleep.
3. Go back to the apartment and tell Micah: I Quit!
4. Sit here peacefully and pray and then type on the blogspot in the dark and try to put a smile on your face as well as mine!! Keep reminding myself, "this too will soon pass" and "all things will work together for good" and "I still love him and God does too!
I've got to do it now...
Brace yourselves! The earth may tremble now...
Pray for me...
"Micah, It's time to drink some of this..." 8:00
I needed some more help... I'll got ask a cute nurse...
8:18 am Go find a cute one!
8:20 am Oh Dear!! The technician is here in the room when I got back!! WORSE! The pill is here and Micah has only drank a cup and a half! :-( Breathe, Becky! I should have persisted! All he could have done is sent me home!! :-)
Well, he swallowed it with a salt water chaser... and it's off and blinking! We will be anxious to hear if it works. Please , along with us, that it will work despite the lack of fluid.
Now we wait... and dread the passing of this large pill... It won't be comfortable. :-(
He can't eat until noon and then it's only liquids until dinner.
I'll let you hear his view of this soon, and I will go find something to eat.
Please pray the camera works and there is no problem... with the camera or with Micah!
Becky signing off for now...
Thursday, April 27, 2006
Weight Loss gurus eat your heart out
I just wanted to give an update on my excitement over the last few days. I came into the hospital weighing in at an uncomfortable 250 lbs and I have good news that now I am down to 103. How is that for massive weight loss... Oh wait I guess that doesn't show the accurate picture I have a lbs->kg conversion in there I need to calculate :-) Same issue that crashes planes and stuff.
I am now at 227 lbs. So now I wanted to advertise to the world about my wonderful weight-loss program for only 19.99. I loss 20 lbs in 2 days. I laid in bed, watched TV, slept, walked about 200 feet a day, ate a low sodium diet. Sounds great huh. I guess I would have to included some of that extra superfine print, saying you feel terrible, hurts to move, you don't feel like doing anything, and your going to the bath room every 20 minutes, with lots of diarrhea. And I guess I need to say something about the weight that is coming off was due to water retention 60 lbs in 20 days (massive skin stretching) and to make this whole thing work your liver has to be messed up. Note: This weight loss program is not for everyone.
Doesn't the fine print just take all of the fun away. I guess I can't really make any money on it. And anything I did make would go to pay the first person who sues me over it. Oh well I have never been in the business of making quick money.
Yes that fine prints sums up my life the last few days. I haven't felt like doing anything, even working on my computer hasn't been something I have wanted to do. I haven't responded to any emails, Updated any blog entries. I have ignored almost all phone calls. It hasn't been fun. I have had a few people stop by but even then I was trying not to fall asleep on them and be sociable.
This stupid infection in me is really beating me up, stealing my joy, hope,and energy. It hasn't taken my faith, but there has been part of me that has wanted to give up because I have nothing left. But that is when God comes through gives me the strength to once again get out of bed and go to the bathroom and then back to bed. :-) I guess I am right now living 5 minutes at a time if I can just make it through the next 5 minutes...
On the positive side the doctors do say my liver levels are continuing to improve.
I am now at 227 lbs. So now I wanted to advertise to the world about my wonderful weight-loss program for only 19.99. I loss 20 lbs in 2 days. I laid in bed, watched TV, slept, walked about 200 feet a day, ate a low sodium diet. Sounds great huh. I guess I would have to included some of that extra superfine print, saying you feel terrible, hurts to move, you don't feel like doing anything, and your going to the bath room every 20 minutes, with lots of diarrhea. And I guess I need to say something about the weight that is coming off was due to water retention 60 lbs in 20 days (massive skin stretching) and to make this whole thing work your liver has to be messed up. Note: This weight loss program is not for everyone.
Doesn't the fine print just take all of the fun away. I guess I can't really make any money on it. And anything I did make would go to pay the first person who sues me over it. Oh well I have never been in the business of making quick money.
Yes that fine prints sums up my life the last few days. I haven't felt like doing anything, even working on my computer hasn't been something I have wanted to do. I haven't responded to any emails, Updated any blog entries. I have ignored almost all phone calls. It hasn't been fun. I have had a few people stop by but even then I was trying not to fall asleep on them and be sociable.
This stupid infection in me is really beating me up, stealing my joy, hope,and energy. It hasn't taken my faith, but there has been part of me that has wanted to give up because I have nothing left. But that is when God comes through gives me the strength to once again get out of bed and go to the bathroom and then back to bed. :-) I guess I am right now living 5 minutes at a time if I can just make it through the next 5 minutes...
On the positive side the doctors do say my liver levels are continuing to improve.
Endurance Battles
Summary of my major battles/struggles of this Liver:
1) Waiting for the pager to go off building patience
2) Liver transplant- Miracle surgery
3) Liver rejection battle 1
4) Liver rejection battle 2
5) Mono/ Total lack of energy
6) Water retention massive weight gain
7) Infection more fevers
8) Water loss diarrhea
If seems as if each one of these is harder to deal with then the one before.
What I am going through now I would say is the worst and hardest thing I have had to endure yet.
Thank You God that I am not having to do all these battles on my own, you are going through it with me. But in my flesh I don't want any more setbacks, I am ready to get better now.
1) Waiting for the pager to go off building patience
2) Liver transplant- Miracle surgery
3) Liver rejection battle 1
4) Liver rejection battle 2
5) Mono/ Total lack of energy
6) Water retention massive weight gain
7) Infection more fevers
8) Water loss diarrhea
If seems as if each one of these is harder to deal with then the one before.
What I am going through now I would say is the worst and hardest thing I have had to endure yet.
Thank You God that I am not having to do all these battles on my own, you are going through it with me. But in my flesh I don't want any more setbacks, I am ready to get better now.
Wednesday, April 26, 2006
DAY 50
For a day that started out so good... it sure ended with all kinds of opportunities to teach others about grace, patience, long suffering... Micah comes through again shining for Jesus!!
Well, let me back up and tell you about our day today!
We (Becky, not Micah) had 6 hours of uninterrupted sleep last night!! (CORRECTION: Micah only got 4 hours of uninterrupted sleep) No interruptions from nurses! No interruptions from Mother Nature! no interruptions of any kind!! It was wonderful!
I left at 6:30 a.m. to run back to the apartment to get cleaned up. I got back to the hospital at 8:30 a.m. expecting an uneventful day... until the doctor came in and informed us Micah would be having a colonoscopy (sp?) TODAY to find out why Micah was experiencing Diarrhea every half hour. Lucky Micah!!
We have gone from good to bad in mere hours! Now the afteroon was all about getting ready for the colonoscopy (what a nightmare!!) and there is nothing funny about someone trying to get inside through the back door that is clearly an EXIT ONLY! Imagine the worse and that about tells you those next few hours! After he was violated and abused now of course the actual procedure was done... AGAIN, EVERYONE IGNORED THE EXIT ONLY SIGN!! Well, Micah got back to his room now in more pain and HUNGARY to find he had no dinner... his dinner was missing! (NO! I know you are looking at me!! I DID NOT EAT IT!) It was never brought to his room so the nurses went out looking for it! Dinner was brought to him at 8:00 p.m. Micah ate it very fast and only said, "it's a good thing pasta tastes good cold as well as hot." Micah's day is not over yet!! The best way to end a day is with a game of TAG!
It is always a challenge for the nurse to catch a vein for an IV. It always takes a number of tries that require a new hole and a new location... first left arm then again and then the right,... Not because it was done successfully, but because his veins were playing hard to get. All of you who get daily blood tests know all about that sort of thing. They say that between the number of times he has blood draws and IVs and the meds being put into him by IV, his veins are getting tough. Did I mentioned yet that Micah hates when they chase the veins with a needle! :-(
What a perfect way to end his day at midnight or start his Wednesday at 12:01! The good news is that nurses on duty had sent for the heavy artillery with this particular nurse (thus the late hour) because they knew Micah was hard and getting harder. Micah needed to be all ready with the IV tube in before the scheduled 4:00 am antibiotic infussion and they didn't want to be playing cat and mouse or TAG at that hour. It was a good thing we got her!! (Thank you, Lord, for gifted people! :-) He could have had more bandaids up and down the arms by the time they were finished instead of only 4 and maybe THEY could have STILL been trying to TAG a vein! It's done now and this IV port will be good for another 3 or 4 days and hopefully we will be out of here before they need to do that again! (And now, please Lord, give him the rest his body so badly needs.)
Until next time... This is Becky signing off!
For a day that started out so good... it sure ended with all kinds of opportunities to teach others about grace, patience, long suffering... Micah comes through again shining for Jesus!!
Well, let me back up and tell you about our day today!
We (Becky, not Micah) had 6 hours of uninterrupted sleep last night!! (CORRECTION: Micah only got 4 hours of uninterrupted sleep) No interruptions from nurses! No interruptions from Mother Nature! no interruptions of any kind!! It was wonderful!
I left at 6:30 a.m. to run back to the apartment to get cleaned up. I got back to the hospital at 8:30 a.m. expecting an uneventful day... until the doctor came in and informed us Micah would be having a colonoscopy (sp?) TODAY to find out why Micah was experiencing Diarrhea every half hour. Lucky Micah!!
We have gone from good to bad in mere hours! Now the afteroon was all about getting ready for the colonoscopy (what a nightmare!!) and there is nothing funny about someone trying to get inside through the back door that is clearly an EXIT ONLY! Imagine the worse and that about tells you those next few hours! After he was violated and abused now of course the actual procedure was done... AGAIN, EVERYONE IGNORED THE EXIT ONLY SIGN!! Well, Micah got back to his room now in more pain and HUNGARY to find he had no dinner... his dinner was missing! (NO! I know you are looking at me!! I DID NOT EAT IT!) It was never brought to his room so the nurses went out looking for it! Dinner was brought to him at 8:00 p.m. Micah ate it very fast and only said, "it's a good thing pasta tastes good cold as well as hot." Micah's day is not over yet!! The best way to end a day is with a game of TAG!
It is always a challenge for the nurse to catch a vein for an IV. It always takes a number of tries that require a new hole and a new location... first left arm then again and then the right,... Not because it was done successfully, but because his veins were playing hard to get. All of you who get daily blood tests know all about that sort of thing. They say that between the number of times he has blood draws and IVs and the meds being put into him by IV, his veins are getting tough. Did I mentioned yet that Micah hates when they chase the veins with a needle! :-(
What a perfect way to end his day at midnight or start his Wednesday at 12:01! The good news is that nurses on duty had sent for the heavy artillery with this particular nurse (thus the late hour) because they knew Micah was hard and getting harder. Micah needed to be all ready with the IV tube in before the scheduled 4:00 am antibiotic infussion and they didn't want to be playing cat and mouse or TAG at that hour. It was a good thing we got her!! (Thank you, Lord, for gifted people! :-) He could have had more bandaids up and down the arms by the time they were finished instead of only 4 and maybe THEY could have STILL been trying to TAG a vein! It's done now and this IV port will be good for another 3 or 4 days and hopefully we will be out of here before they need to do that again! (And now, please Lord, give him the rest his body so badly needs.)
Until next time... This is Becky signing off!
Monday, April 24, 2006
MONDAY APRIL 24 DAY 47
DAY 3 IN THE HOSPITAL AGAIN!
Last night was another tough night with another fever attack and chills. It didn't last as long though, because right at the start the nurses gave him the Tylonol he was requesting... We all knew what was coming having been through it a few times now. The nurses didn't even hesitate... Micah knew what was happening and everyone jumped to position! He still felt miserable for a while, but then sleep finally settled in again.
I wish I could write about something less embarrassing about this morning... but I haven't seen much of him so far!
He has been spending an awful lot of time in the bathroom playing KING FOR A DAY... SITTING ON HIS THRONE! :-)
A lot of HIS SERVANTS have come in looking for him, but they have not been allowed into his private throne room.
So, he has been very anti-social this morning! :-)
Leaving his mother to entertain herself again and act as Micah's private secretary scheduling appointments with the various nurses! :-)
I have been giving some thought to turning in my application here at the hospital since I have been
This KING FOR A DAY has got a good side though... THE DIURETICS & LASIXS are working and the more fluid that leaves his body the better! :-)
I am disappointed that we haven't seen a doctor yet today... maybe after lunch.
Oh! And good news! Micah didn't get the hamburger for breakfast this morning!
I think it was good that we cut the hamburger in half last night and he ate a bite of it. Must have been enough for the kiitchen! :-)
ALRIGHT!! THE TRANSPLANT TEAM CAME!! ALL 9 OF THEM! :-)
That was so reassuring to me! They are on top of it. :-)
They have made some changes now lowering some meds and increasing others for the water retention. The liver numbers have continued to drop, despite the fact it's not producing the Albunin which is part of the problem with the water retension and the infection which was the reason we are in the hospital again. Maybe thatinfection really was a blessing in disguise... just so the doctors could see him again and DO SOMETHING!! Hopefully the changes they are making will do some good now!
Well, we know that he has an infection.
The infection would have been leaving his body, but because he is retaining water, the infection is staying within the fluid... All the more reason to work at getting the fluids to be eliminated.
LUNCH TIME!! You will be surprised to hear what was for lunch!! AWE... You guessed it! A HAMBURGER!! But it wasn't dry this time! There was musterd, catsup, and mayonaise! :-) I think Micah will be disappointed not having a hamburger for dinner, but the dietician
will be here shortly to talk over menu ideas with Micah. I am sure he will pass on another hamburger for dinner! :-)
We are going to watch a movie on his computer, so I will get this posted now...
Until next time...
Becky
DAY 3 IN THE HOSPITAL AGAIN!
Last night was another tough night with another fever attack and chills. It didn't last as long though, because right at the start the nurses gave him the Tylonol he was requesting... We all knew what was coming having been through it a few times now. The nurses didn't even hesitate... Micah knew what was happening and everyone jumped to position! He still felt miserable for a while, but then sleep finally settled in again.
I wish I could write about something less embarrassing about this morning... but I haven't seen much of him so far!
He has been spending an awful lot of time in the bathroom playing KING FOR A DAY... SITTING ON HIS THRONE! :-)
A lot of HIS SERVANTS have come in looking for him, but they have not been allowed into his private throne room.
So, he has been very anti-social this morning! :-)
Leaving his mother to entertain herself again and act as Micah's private secretary scheduling appointments with the various nurses! :-)
I have been giving some thought to turning in my application here at the hospital since I have been
This KING FOR A DAY has got a good side though... THE DIURETICS & LASIXS are working and the more fluid that leaves his body the better! :-)
I am disappointed that we haven't seen a doctor yet today... maybe after lunch.
Oh! And good news! Micah didn't get the hamburger for breakfast this morning!
I think it was good that we cut the hamburger in half last night and he ate a bite of it. Must have been enough for the kiitchen! :-)
ALRIGHT!! THE TRANSPLANT TEAM CAME!! ALL 9 OF THEM! :-)
That was so reassuring to me! They are on top of it. :-)
They have made some changes now lowering some meds and increasing others for the water retention. The liver numbers have continued to drop, despite the fact it's not producing the Albunin which is part of the problem with the water retension and the infection which was the reason we are in the hospital again. Maybe thatinfection really was a blessing in disguise... just so the doctors could see him again and DO SOMETHING!! Hopefully the changes they are making will do some good now!
Well, we know that he has an infection.
The infection would have been leaving his body, but because he is retaining water, the infection is staying within the fluid... All the more reason to work at getting the fluids to be eliminated.
LUNCH TIME!! You will be surprised to hear what was for lunch!! AWE... You guessed it! A HAMBURGER!! But it wasn't dry this time! There was musterd, catsup, and mayonaise! :-) I think Micah will be disappointed not having a hamburger for dinner, but the dietician
will be here shortly to talk over menu ideas with Micah. I am sure he will pass on another hamburger for dinner! :-)
We are going to watch a movie on his computer, so I will get this posted now...
Until next time...
Becky
Sunday, April 23, 2006
SUNDAY, APRIL 23 DAY 48
I think I am too old for amusement parks, especially roller coaster rides!! I want to stop this one and take Micah and go home!
I left the hospital this morning to run back to the apartment to get cleaned up and then I called him before I left the apartment to see if he needed anything... I left the apartment and drove the 5 or 10 minutes and when I got back to Micah's room I found Micah in extreme pain in his back & chills (teeth chattering, the rest of him near convulsions) and nurses working on him. That all happened within 5 or 10 minutes!! I had just talked to him on the phone and told him I was heading back now
Now he has another fever... 101 and climbing. :-(
The nurse was just in. Looks like they have a name for the infection now...(I don't remember what it was, but something with the word BILE... sounds like still liver related. :-(
At least he is calmer now...and trying to sleep.
This is so discouraging and it is taking a real toll on Micah. His spirits are pretty low today...or another word would be depressed. :-( As you can see He still needs your continued prayers... and we appreciate your prayers more than we can say!
... BREAK...
My friend Chris came today from Ogden, to take me out for lunch and a time to visit! It made me a little nervous leaving Micah so soon after his tough morning, but he has been sleeping... ever since. So my leaving may have been the best thing for him and ME! :-) I hope all his sleeping this afternoon won't keep him awake all night now!
Now since he is sleeping I have to entertain myself...
1. I can sit here and watch Micah sleep! There is a few ways to enjoy this!
a. Watch the rise and fall of Micah's chest.
b. Count how many breaths he takes in a minute...
c. Watch for his next movement... an eye? a finger? a lip? a whole body repositioning!?
2. I can watch the numbers on the IV Pump and wait for the beeping to begin when the bottle is empty...
or I can watch each drip of the IV medication as it drips down in the collector tube
3. Watch the second hand move around the clock... See which hand gets to 12 first... the second hand or the hour hand! (Surprise!! It's always the second hand!! :-)
4. Count how many times the nurse comes in to check on Micah in an hour...
5. Write something for the Blogspot!!
Can you guess what I decided to do?
Well, let's see what else I can tell you about now.
Micah's dinner was just brought in. This wasn't a meal to write home to mom about! It looks like the kitchen decided to punish Micah for not eating all his lunch!! We had sent his tray back at noon because he wasn't up to eating it at lunch and they must have kept it warm for him to try again for dinner! When we took the tray cover off the dinner plate, the same PLAIN, dry hamburger was smiling up at him - along with the little dinner roll and vegetables. I thought I heard a voice say... "We're Back!" We sent it back to the kitchen again. Do you think he will get it for breakfast tomorrow morning now? :-)
I just read over my "WE'RE BACK" entry.
How quickly things change. I am still glad that there is someone else to help with Micah's care, but when I wrote: "Micah is looking much better now after all the medication they have given him.
He even has a smile on his face!" THAT WAS NOT TODAY!!
Micah says that in these 45 days he has had to endure, TODAY WAS THE WORSE!
This has been a very hard day. Hopefully tomorrow will be better.
We will at least be talking with some transplant doctors in the morning.
I just pray it won't be really bad news again. We'll let you know tomorrow.
I am heading to bed now...
Good Night, people of the Internet World!
I think I am too old for amusement parks, especially roller coaster rides!! I want to stop this one and take Micah and go home!
I left the hospital this morning to run back to the apartment to get cleaned up and then I called him before I left the apartment to see if he needed anything... I left the apartment and drove the 5 or 10 minutes and when I got back to Micah's room I found Micah in extreme pain in his back & chills (teeth chattering, the rest of him near convulsions) and nurses working on him. That all happened within 5 or 10 minutes!! I had just talked to him on the phone and told him I was heading back now
Now he has another fever... 101 and climbing. :-(
The nurse was just in. Looks like they have a name for the infection now...(I don't remember what it was, but something with the word BILE... sounds like still liver related. :-(
At least he is calmer now...and trying to sleep.
This is so discouraging and it is taking a real toll on Micah. His spirits are pretty low today...or another word would be depressed. :-( As you can see He still needs your continued prayers... and we appreciate your prayers more than we can say!
... BREAK...
My friend Chris came today from Ogden, to take me out for lunch and a time to visit! It made me a little nervous leaving Micah so soon after his tough morning, but he has been sleeping... ever since. So my leaving may have been the best thing for him and ME! :-) I hope all his sleeping this afternoon won't keep him awake all night now!
Now since he is sleeping I have to entertain myself...
1. I can sit here and watch Micah sleep! There is a few ways to enjoy this!
a. Watch the rise and fall of Micah's chest.
b. Count how many breaths he takes in a minute...
c. Watch for his next movement... an eye? a finger? a lip? a whole body repositioning!?
2. I can watch the numbers on the IV Pump and wait for the beeping to begin when the bottle is empty...
or I can watch each drip of the IV medication as it drips down in the collector tube
3. Watch the second hand move around the clock... See which hand gets to 12 first... the second hand or the hour hand! (Surprise!! It's always the second hand!! :-)
4. Count how many times the nurse comes in to check on Micah in an hour...
5. Write something for the Blogspot!!
Can you guess what I decided to do?
Well, let's see what else I can tell you about now.
Micah's dinner was just brought in. This wasn't a meal to write home to mom about! It looks like the kitchen decided to punish Micah for not eating all his lunch!! We had sent his tray back at noon because he wasn't up to eating it at lunch and they must have kept it warm for him to try again for dinner! When we took the tray cover off the dinner plate, the same PLAIN, dry hamburger was smiling up at him - along with the little dinner roll and vegetables. I thought I heard a voice say... "We're Back!" We sent it back to the kitchen again. Do you think he will get it for breakfast tomorrow morning now? :-)
I just read over my "WE'RE BACK" entry.
How quickly things change. I am still glad that there is someone else to help with Micah's care, but when I wrote: "Micah is looking much better now after all the medication they have given him.
He even has a smile on his face!" THAT WAS NOT TODAY!!
Micah says that in these 45 days he has had to endure, TODAY WAS THE WORSE!
This has been a very hard day. Hopefully tomorrow will be better.
We will at least be talking with some transplant doctors in the morning.
I just pray it won't be really bad news again. We'll let you know tomorrow.
I am heading to bed now...
Good Night, people of the Internet World!
Saturday, April 22, 2006
'WE'RE BACK!!"
Micah Update:
After a week of wonderful reports from the doctor about how well THE NUMBERS were doing, I had almost gotten to the point of feeling Micah was out of the woods now... WE HAD JUST REACH THE ONE WEEK MARK OF THE NUMBERS FALLING EVERY DAY!!
About 2:00 p.m. HE HAD GOTTEN THE FIGURES FOR FRIDAY! Some of the numbers had continued to go down, BUT!...a few had gone up. :-( The white blood cell count had gone up and the doctors didn't know why. They weren't too concerned since Micah told them he was OK... just tired. Five hours later he was running 103 temp again. :-( My only connection with 103 temps was in connection with a Liver Rejection. My heart sank...
Today the report was that the numbers were about where there were and that at this point they are saying "ACUTE INFECTION" not "LIVER REJECTION!" TYL!!!
Well, we went back to Micah's favorite resort or Hotel again... (known also as the hospital!)
And I spent another night on a hospital cot.
Let's see... Does that mean "STRIKE 3!!" OR... "THIRD TIME'S THE CHARM!! " :-)
I am personally relieved to be here. I feel so much better when Micah is under a doctor's care... especially now with Micah's pregnancy! :-)
They are giving him some special medications to help with all of the water retention. He just had two IV treatments giving him the Albunin his blood is lacking to deal with all this fluid. Hopefully this will help along with the other diaretic pills he is taking.
Micah is looking much better now after all the medication they have given him.
He even has a smile on his face! Yep! That is what happens when a young man is waited on by all these nice nurses!
Mom's care just can't compete! :-) It's nice to see him feeling better so that means Mom is feeling better also! And if mom is feeling better... I hope that means YOU are feeling better now also!! :-)
Please keep praying, though. As you can see these little "bumps" are something we may have to put up with for a while. It's teaching me patience. BUT I WANT HIM BETTER... NOW!! we are hanging in there though... keeping the faith... Trusting in the Lord.
I Peter 1:6,7
After a week of wonderful reports from the doctor about how well THE NUMBERS were doing, I had almost gotten to the point of feeling Micah was out of the woods now... WE HAD JUST REACH THE ONE WEEK MARK OF THE NUMBERS FALLING EVERY DAY!!
About 2:00 p.m. HE HAD GOTTEN THE FIGURES FOR FRIDAY! Some of the numbers had continued to go down, BUT!...a few had gone up. :-( The white blood cell count had gone up and the doctors didn't know why. They weren't too concerned since Micah told them he was OK... just tired. Five hours later he was running 103 temp again. :-( My only connection with 103 temps was in connection with a Liver Rejection. My heart sank...
Today the report was that the numbers were about where there were and that at this point they are saying "ACUTE INFECTION" not "LIVER REJECTION!" TYL!!!
Well, we went back to Micah's favorite resort or Hotel again... (known also as the hospital!)
And I spent another night on a hospital cot.
Let's see... Does that mean "STRIKE 3!!" OR... "THIRD TIME'S THE CHARM!! " :-)
I am personally relieved to be here. I feel so much better when Micah is under a doctor's care... especially now with Micah's pregnancy! :-)
They are giving him some special medications to help with all of the water retention. He just had two IV treatments giving him the Albunin his blood is lacking to deal with all this fluid. Hopefully this will help along with the other diaretic pills he is taking.
Micah is looking much better now after all the medication they have given him.
He even has a smile on his face! Yep! That is what happens when a young man is waited on by all these nice nurses!
Mom's care just can't compete! :-) It's nice to see him feeling better so that means Mom is feeling better also! And if mom is feeling better... I hope that means YOU are feeling better now also!! :-)
Please keep praying, though. As you can see these little "bumps" are something we may have to put up with for a while. It's teaching me patience. BUT I WANT HIM BETTER... NOW!! we are hanging in there though... keeping the faith... Trusting in the Lord.
I Peter 1:6,7
Friday, April 21, 2006
Well another day...
The good news it has been a week that my liver levels have been continuing to come down. So things on that end are good. I am not where they want me to be yet but it is getting a lot closer. But on the bad side I am retaining A LOT of fluid, and that makes everything very challenging. I am now up to 245 lbs, so only my really extra big cloths are fitting. I was at 190lbs, 20 days ago. if it wasn't for this extra mass I feel like I would be doing much better.
Here is a quote I got in one of my emails, I thought was really good.
But there's no point in going over what we can't do anything about. Focus on what we can control - our attitude as we live out our faith. As believers, we know that God has a purpose for our lives and for everything that happens to us. We're never going to change the past, but we can live in the knowledge that what was lost and found in the process of getting to where we are now has become a unique part of who we are and of what God has given us to do.
John Fischer is the Senior Writer for Purpose Driven Life Daily Devotionals.
Here is a quote I got in one of my emails, I thought was really good.
But there's no point in going over what we can't do anything about. Focus on what we can control - our attitude as we live out our faith. As believers, we know that God has a purpose for our lives and for everything that happens to us. We're never going to change the past, but we can live in the knowledge that what was lost and found in the process of getting to where we are now has become a unique part of who we are and of what God has given us to do.
John Fischer is the Senior Writer for Purpose Driven Life Daily Devotionals.
Wednesday, April 19, 2006
I have more to report today...
I had a pretty good day. I have had more energy today then I have in quite a while. It was wednesday so that meant waking up and going to to the hospital to give more blood so they see how I am doing with everything, it is fun they know me by name, so when I walk in I just have to tell them my birth-date. But on the down side I have gotten poked so many times my veins are starting to scar over. I was already challenging for them because my veins roll really easy and I can pass out really easy, now they have a new challenge on me. I miss the PICC line that I had when I was in the hospital, didn't like it going in and showering with it in, but when it came to giving blood I liked it.
After the hospital I was hungry and so we went out for breakfast, at IHOP but they didn't get my order right, my eggs were over-easy and I order over-hard. At camp years ago we made "German pancakes" that were really good so I was expecting what I had years ago, but to my disappointment they brought crepes with lemons on them, not anywhere close to the memory I have of "German Pancakes", my mom says that she will try to find the recipe that we used at camp and we will make them ourselves some time at home. I am not that big on complaining about little things and this was definitely minor in comparison to what I have been through, and it was still good food. So I am not letting that get me down.
This afternoon I was still feeling pretty good so after lunch we headed out on this beautiful day after storm (I always like those days how the SLC valley clears up and you can see for miles) for a drive up to Ogden, to do a couple of errands. And my mom had an long time old friend who works at Sam's Club that she was dying to see. I was happy to be able to have enough energy that she could do that, she has been getting stir crazy and board with me sitting not doing much the last few days. Unfortunately my energy isn't up to what it used to be yet so my knees started to swell and I was getting tired so we headed home.
For dinner tonight we were in the mood for Chinese food, but I haven't been able to find a really good Chinese take-out place in Salt Lake. I know of several really good Chinese buffets, or dine in places but to take an order to-go that isn't $8.00+ a person I haven't been able to find. If anyone knows of a "Good" cheeper place we would be interested in recommendations.
So after a fairly busy day (when compared to the last few days, but this is nothing compared to what I used to do in a day :-) ... ), there was still part of me that I had some energy left after dinner and a big part of me wanted to go to Church tonight. I told my mom I would even where the surgical mask to help avoid germs. She didn't think it was a good idea, "I don't what you to over do it, remember the last time you had a really good day?" Yeah I remember I spent the night in emergency with 103.5 temperature... Yeah as much as I want to go to Church worship God, fellowship with my brothers and sisters, I also know I need to set limits and not push the limits to far yet. So to all the people in my church family know that I am thinking about you and praying for you and the great things that God is at work doing in our city. "One life at a time, One world in our lifetime!" Win, Build, Send
So overall today has been a really good day, the hospital also called about the blood work and for the first time they told me that I don't need to change any of my drug dosages, and my high levels are continuing to creep (come down) lower. We will hope and pray that this trend continues and they say the same thing about my friday blood-work :-)
After the hospital I was hungry and so we went out for breakfast, at IHOP but they didn't get my order right, my eggs were over-easy and I order over-hard. At camp years ago we made "German pancakes" that were really good so I was expecting what I had years ago, but to my disappointment they brought crepes with lemons on them, not anywhere close to the memory I have of "German Pancakes", my mom says that she will try to find the recipe that we used at camp and we will make them ourselves some time at home. I am not that big on complaining about little things and this was definitely minor in comparison to what I have been through, and it was still good food. So I am not letting that get me down.
This afternoon I was still feeling pretty good so after lunch we headed out on this beautiful day after storm (I always like those days how the SLC valley clears up and you can see for miles) for a drive up to Ogden, to do a couple of errands. And my mom had an long time old friend who works at Sam's Club that she was dying to see. I was happy to be able to have enough energy that she could do that, she has been getting stir crazy and board with me sitting not doing much the last few days. Unfortunately my energy isn't up to what it used to be yet so my knees started to swell and I was getting tired so we headed home.
For dinner tonight we were in the mood for Chinese food, but I haven't been able to find a really good Chinese take-out place in Salt Lake. I know of several really good Chinese buffets, or dine in places but to take an order to-go that isn't $8.00+ a person I haven't been able to find. If anyone knows of a "Good" cheeper place we would be interested in recommendations.
So after a fairly busy day (when compared to the last few days, but this is nothing compared to what I used to do in a day :-) ... ), there was still part of me that I had some energy left after dinner and a big part of me wanted to go to Church tonight. I told my mom I would even where the surgical mask to help avoid germs. She didn't think it was a good idea, "I don't what you to over do it, remember the last time you had a really good day?" Yeah I remember I spent the night in emergency with 103.5 temperature... Yeah as much as I want to go to Church worship God, fellowship with my brothers and sisters, I also know I need to set limits and not push the limits to far yet. So to all the people in my church family know that I am thinking about you and praying for you and the great things that God is at work doing in our city. "One life at a time, One world in our lifetime!" Win, Build, Send
So overall today has been a really good day, the hospital also called about the blood work and for the first time they told me that I don't need to change any of my drug dosages, and my high levels are continuing to creep (come down) lower. We will hope and pray that this trend continues and they say the same thing about my friday blood-work :-)
Tuesday, April 18, 2006
Becky's Banana Split
Here's the Banana Split I made today! :-)
Let's see...
The banana is Micah (My sweet, wonderful, best looking, top banana on that tall tree!)
...who has been split open for the Liver surgery...
The two or three scoops of ice cream (chocolate & vanilla & strawberry) is his two or three Liver rejections!)...
The hot fudge topping, Butterscotch topping, and Strawberry topping are the doctors that have the rejections all covered...
The whip cream is the snow that is falling on everything right now!!
The nuts are all his friends and family going nuts over all this! And the biggest nut is Me!
And the best part of this Banana Split is the cherry on top which represents PRAYER!
OH!!! And the item I forgot is the BOWL that this Sundae is built in... which is God's hands holding this whole drippy mess! The things melting are only the things HE is allowing to melt and flow through HIS fingers! HE KNOWS & CARES ABOUT IT ALL! HE knows about the rejections that are melting and the doctors who are trying to keep it all covered as they run all over the place trying to keep it all together and don't know what to try next! HE hears all the prayers on top of all this and...
Even more HE knows all about that banana buried under all this mess... BECAUSE HE MADE THAT BANANA!! HE ALSO KNOWS about the nutty mom who hates the whip cream right now and who is talking about Sundaes now!! :-) YES! She has gone nutty but is trying to keep a sense of humor!
Let's see...
The banana is Micah (My sweet, wonderful, best looking, top banana on that tall tree!)
...who has been split open for the Liver surgery...
The two or three scoops of ice cream (chocolate & vanilla & strawberry) is his two or three Liver rejections!)...
The hot fudge topping, Butterscotch topping, and Strawberry topping are the doctors that have the rejections all covered...
The whip cream is the snow that is falling on everything right now!!
The nuts are all his friends and family going nuts over all this! And the biggest nut is Me!
And the best part of this Banana Split is the cherry on top which represents PRAYER!
OH!!! And the item I forgot is the BOWL that this Sundae is built in... which is God's hands holding this whole drippy mess! The things melting are only the things HE is allowing to melt and flow through HIS fingers! HE KNOWS & CARES ABOUT IT ALL! HE knows about the rejections that are melting and the doctors who are trying to keep it all covered as they run all over the place trying to keep it all together and don't know what to try next! HE hears all the prayers on top of all this and...
Even more HE knows all about that banana buried under all this mess... BECAUSE HE MADE THAT BANANA!! HE ALSO KNOWS about the nutty mom who hates the whip cream right now and who is talking about Sundaes now!! :-) YES! She has gone nutty but is trying to keep a sense of humor!
Update from Becky
I wish I had something exciting to write about.
It's just another day in Utah.
And it is 4:30 p.m. already!!
BUT!! One exciting thing is that the snow is melting again!!
Well, for a day that has started at a turtle's pace... it went like the rabbit who won the race!!
It's almost dinner time again! And then it will be bed time already!!
Now for an update on Micah.
Well, Ever since Micah was little he has been a human barometer. His body would always tell him if a storm was coming even before we knew a storm was in the forecast! So these two days has had Micah feeling under the weather some. He hasn't felt up to doing much... including his Blogspot. :-(
Stormy weather is rough on Micah.
So, I decided to tell you what we have been doing today...
I have spent today cleaning... Vacuuming, wash kitchen floor, cleaning & organizing a book case, going through Micah's dresser drawers and getting rid of Clothes that he has had since Jr. High
School. Yes, I have been doing jobs that have needed to be done for some time especially getting rid of the old clothes and cleaning out drawers. I still have one more room to tackle... the "junk" room or storage room that I am now sleeping in. It's not too bad, but it needs some organization. I'll have Micah's apartment looking like a home soon! :-) Micah confesses that he was a little worried about mom coming to help him in the beginning, but that it's been going surprisingly well. I just have to be patient and throw things out slowly! :-) I can't just toss everything all in one day! :-) Just have to sneak a few things into the trash - one item at a time! 42 days... 42 items in the trash! :-) No... I'm only kidding... I make sure to get his approval first. And we have thrown out more than that! :-)
Micah is saying he is getting hungry, so I better get his dinner now. His wish is my command!
Love, Becky
It's just another day in Utah.
And it is 4:30 p.m. already!!
BUT!! One exciting thing is that the snow is melting again!!
Well, for a day that has started at a turtle's pace... it went like the rabbit who won the race!!
It's almost dinner time again! And then it will be bed time already!!
Now for an update on Micah.
Well, Ever since Micah was little he has been a human barometer. His body would always tell him if a storm was coming even before we knew a storm was in the forecast! So these two days has had Micah feeling under the weather some. He hasn't felt up to doing much... including his Blogspot. :-(
Stormy weather is rough on Micah.
So, I decided to tell you what we have been doing today...
I have spent today cleaning... Vacuuming, wash kitchen floor, cleaning & organizing a book case, going through Micah's dresser drawers and getting rid of Clothes that he has had since Jr. High
School. Yes, I have been doing jobs that have needed to be done for some time especially getting rid of the old clothes and cleaning out drawers. I still have one more room to tackle... the "junk" room or storage room that I am now sleeping in. It's not too bad, but it needs some organization. I'll have Micah's apartment looking like a home soon! :-) Micah confesses that he was a little worried about mom coming to help him in the beginning, but that it's been going surprisingly well. I just have to be patient and throw things out slowly! :-) I can't just toss everything all in one day! :-) Just have to sneak a few things into the trash - one item at a time! 42 days... 42 items in the trash! :-) No... I'm only kidding... I make sure to get his approval first. And we have thrown out more than that! :-)
Micah is saying he is getting hungry, so I better get his dinner now. His wish is my command!
Love, Becky
I don't have much to report...
I have been trying to come up with something to put on the blog today as an update. Nothing new is really happening here. I am still massively swollen, so moving is very challenging. I still feel very week so when I stand and move my energy level disappears before I make it to my destination, so it is easier to not move or do anything at all. The hospital called and let us know that my liver levels are down again, but we have learned that doesn't really mean all that much, it will change. My prograf level is to low so I get to up the does on that pill, which I am sure will change again. So overall it is just another day like so many other days the last 2 weeks, nothing new.
Monday, April 17, 2006
Wow 40 Days...
A lot has happened in the last 40 days. I have been on quite a roller coaster of a ride. With ups and downs and unexpected twists in the road. I am definitely ready for this roller coaster to be coming to an end and let me off. Sunday was a pretty good day. I have the normal problems of moving is a pain and difficult. My ankles/knees/legs and belly look like overfilled water balloons. Overall today was a pretty good day, in many ways it has been like so many other days the last few weeks where I spend it relaxing in a recliner watching movies.
But today was also different in that I set up my bike on my bike trainer, and I freaked my mom out. I have been wanting to ride for quite some time. My mom didn't see how this was possible. "You can't lift your leg that high to get on the bike". So the rebellious part of me wanted to prove her wrong. I know bad reason/modivation, not listening to my mom. I also new that it would be good forcing the muscles to pump and maybe move some of this fluid. Last year when I broke my ankle rock climbing I figured out how to ride my bike with the walking boot so I new I could do basically the same thing again. And so I did. I got on the bike no problem. Since the bike is on a trainer not going anywhere it is a lot easier to throw the leg behind the seat getting on then lifting it over to top bar straddling the bike to get on. It is just about a little balance. Of coarse I didn't have the energy to ride for very long, I think I made it 3 or 4 minutes, but riding for a long time wasn't really the point. It felt really good from my waist down, my back muscles didn't like it to much since they have been under worked the last month. So now I have a new activity I can do.
Also today Ryan and Christina stopped by and it was really good to spend some time talking and laughing, praying. That is one thing that I have really missed being in this state of no immune system can't be around people that are sick. I miss hanging out with my friends and family. So I am praying that this will be over with soon so I can get back to my social life. And besides there is a wedding coming up in a few months that I need to be able to go to. :-)
My mom has been wanting Applebees for quite some time so today as our special "Easter" dinner we went out and had it ToGo came home and had a pretty good dinner.
My hope is that I can have more days like today where I am able to more then just sit in a chair with my feet up. But we will see what God has in store for me tomorrow.
But today was also different in that I set up my bike on my bike trainer, and I freaked my mom out. I have been wanting to ride for quite some time. My mom didn't see how this was possible. "You can't lift your leg that high to get on the bike". So the rebellious part of me wanted to prove her wrong. I know bad reason/modivation, not listening to my mom. I also new that it would be good forcing the muscles to pump and maybe move some of this fluid. Last year when I broke my ankle rock climbing I figured out how to ride my bike with the walking boot so I new I could do basically the same thing again. And so I did. I got on the bike no problem. Since the bike is on a trainer not going anywhere it is a lot easier to throw the leg behind the seat getting on then lifting it over to top bar straddling the bike to get on. It is just about a little balance. Of coarse I didn't have the energy to ride for very long, I think I made it 3 or 4 minutes, but riding for a long time wasn't really the point. It felt really good from my waist down, my back muscles didn't like it to much since they have been under worked the last month. So now I have a new activity I can do.
Also today Ryan and Christina stopped by and it was really good to spend some time talking and laughing, praying. That is one thing that I have really missed being in this state of no immune system can't be around people that are sick. I miss hanging out with my friends and family. So I am praying that this will be over with soon so I can get back to my social life. And besides there is a wedding coming up in a few months that I need to be able to go to. :-)
My mom has been wanting Applebees for quite some time so today as our special "Easter" dinner we went out and had it ToGo came home and had a pretty good dinner.
My hope is that I can have more days like today where I am able to more then just sit in a chair with my feet up. But we will see what God has in store for me tomorrow.
Sunday, April 16, 2006
Saturday, April 15, 2006
The rollercoaster continues
It is crazy how I can have a really good day, (Friday) and then the next day (Saturday) my energy level bottoms out again. Yesterday was a really good day. I even felt up to stopping by work and saying hi for a bit. Went for a good walk. And to top it all off I got about 4 1//2 - 5 hours of sleep, which is unheard of for me and I didn't even take a sleeping pill. Then today I feel like I am bottoming out again. In many ways I am doing good, but when it comes to moving It is a royal pain, "Everywhere!" My legs knees and ankles are so enlarged right now it hurts to move them or bend them. I wish there was a way I could put them in a squeegee and push all the extra fluid out of them. So in the mean time I am trying to keep them elevated and let gravity help move the fluid. It is really weird when I press on my skin I can leave indents for a second or two before they fill back in. The human body is amazing how it all works. Whoever said we just happened by chance and millions and millions of years must have been blind, dumb and stupid if they ever took a human anatomy class. The body works to perfectly to not be designed, even when it doesn't work properly and has an over active immune-system that wants to kill itself it still works by design and other systems take over to compensate for the messed up system. After going through this transplant I have a new respect for what doctors are capable of doing, but I still have to laugh at how little they truly know about transplanting. And it just puts it more in perspective how great and powerful God is, and he holds everything together.
Thursday, April 13, 2006
My mom asked...
what I thought of this whole liver thing. My levels have gone up again. So they are changing the dosage on one of my drugs again hoping that things will turn around again. But I don't know that they really know much more then they are giving it there best guess, and I get to ride the roller-coaster till they figure it out. If things don't change they have talked about re-listing me and then we get to start all over again, without an immune system this time :-) Lucky me... My Mom has been watching me very close and anytime I say I am not feeling good she is very concerned and starts wondering if we need to go back to the Hospital. It has been a big help having her here with me, Thank you Campus Towers for letting her be here with me...
I started thinking why has this week felt so much harder the previous weeks. Nothing has really changed all that much this week from last week. I still don't have the energy level that I want to have. I am still really swollen, bigger then before which makes moving really uncomfortable and hard. But then I got thinking, my attitude has changed. This week I have been focusing more on how I feel, what my energy level is and what I want to do. I have in a way made the story about me, and not God. Then the saying I have quoted to myself so many times the last year came to mind. It is NOT about you! It is History(His Story) not mine.
It is so easy to put the focus back on selfish me and take focus off of Christ, the only true Saviour and Healer. Two stories from the Bible came to mind. The first one is Peter walking on water:
(Matthew 14:27-31)
27 But Jesus immediately said to them: “Take courage! It is I. Don’t be afraid.”
28 “Lord, if it’s you,” Peter replied, “tell me to come to you on the water.”
29 “Come,” he said. Then Peter got down out of the boat, walked on the water and came towards Jesus.
30 But when he saw the wind, he was afraid and, beginning to sink, cried out, “Lord, save me!”
31 Immediately Jesus reached out his hand and caught him. “You of little faith,” he said, “why did you doubt?”
It is very easy for me right now to be looking at the struggles I am facing every day with this liver and the up and down roller coaster of a month I have had and it is very easy to get overwhelmed and freak out and sink. But God is always faithful and right there. Lord save me from this. " Immediately Jesus reached out his hand and caught him."
Second the Fiery Furnace:
(Daniel 3:14-18)
14 and Nebuchadnezzar said to them, “Is it true, Shadrach, Meshach and Abednego, that you do not serve my gods or worship the image of gold I have set up?
15 Now when you hear the sound of the horn, flute, zither, lyre, harp, pipes and all kinds of music, if you are ready to fall down and worship the image I made, very good. But if you do not worship it, you will be thrown immediately into a blazing furnace. Then what god will be able to rescue you from my hand?”
16 Shadrach, Meshach and Abednego replied to the king, “O Nebuchadnezzar, we do not need to defend ourselves before you in this matter.
17 If we are thrown into the blazing furnace, the God we serve is able to save us from it, and he will rescue us from your hand, O king.
18 But even if he does not, we want you to know, O king, that we will not serve your gods or worship the image of gold you have set up.”
Everything in this world/life is all going to burn, "Only one life, it will soon be past, only what is done for Christ will last." -Anonymous
So for me to get caught up on my trivial problems, is really a small thing to deal with when there are people dying for the Faith everyday. And so far I don't think I have come anywhere close to endure what Jesus Christ, Paul, Peter, and all the other Apostles, endured.
So I actually have a lot to be thankful for. I could be far worse off. Thank you Lord!
(Romans 8:28)
28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
(1 Peter 1:6, 7)
6 In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials.
7 These have come so that your faith--of greater worth than gold, which perishes even though refined by fire--may be proved genuine and may result in praise, glory and honour when Jesus Christ is revealed.
I started thinking why has this week felt so much harder the previous weeks. Nothing has really changed all that much this week from last week. I still don't have the energy level that I want to have. I am still really swollen, bigger then before which makes moving really uncomfortable and hard. But then I got thinking, my attitude has changed. This week I have been focusing more on how I feel, what my energy level is and what I want to do. I have in a way made the story about me, and not God. Then the saying I have quoted to myself so many times the last year came to mind. It is NOT about you! It is History(His Story) not mine.
It is so easy to put the focus back on selfish me and take focus off of Christ, the only true Saviour and Healer. Two stories from the Bible came to mind. The first one is Peter walking on water:
(Matthew 14:27-31)
27 But Jesus immediately said to them: “Take courage! It is I. Don’t be afraid.”
28 “Lord, if it’s you,” Peter replied, “tell me to come to you on the water.”
29 “Come,” he said. Then Peter got down out of the boat, walked on the water and came towards Jesus.
30 But when he saw the wind, he was afraid and, beginning to sink, cried out, “Lord, save me!”
31 Immediately Jesus reached out his hand and caught him. “You of little faith,” he said, “why did you doubt?”
It is very easy for me right now to be looking at the struggles I am facing every day with this liver and the up and down roller coaster of a month I have had and it is very easy to get overwhelmed and freak out and sink. But God is always faithful and right there. Lord save me from this. " Immediately Jesus reached out his hand and caught him."
Second the Fiery Furnace:
(Daniel 3:14-18)
14 and Nebuchadnezzar said to them, “Is it true, Shadrach, Meshach and Abednego, that you do not serve my gods or worship the image of gold I have set up?
15 Now when you hear the sound of the horn, flute, zither, lyre, harp, pipes and all kinds of music, if you are ready to fall down and worship the image I made, very good. But if you do not worship it, you will be thrown immediately into a blazing furnace. Then what god will be able to rescue you from my hand?”
16 Shadrach, Meshach and Abednego replied to the king, “O Nebuchadnezzar, we do not need to defend ourselves before you in this matter.
17 If we are thrown into the blazing furnace, the God we serve is able to save us from it, and he will rescue us from your hand, O king.
18 But even if he does not, we want you to know, O king, that we will not serve your gods or worship the image of gold you have set up.”
Everything in this world/life is all going to burn, "Only one life, it will soon be past, only what is done for Christ will last." -Anonymous
So for me to get caught up on my trivial problems, is really a small thing to deal with when there are people dying for the Faith everyday. And so far I don't think I have come anywhere close to endure what Jesus Christ, Paul, Peter, and all the other Apostles, endured.
So I actually have a lot to be thankful for. I could be far worse off. Thank you Lord!
(Romans 8:28)
28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
(1 Peter 1:6, 7)
6 In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials.
7 These have come so that your faith--of greater worth than gold, which perishes even though refined by fire--may be proved genuine and may result in praise, glory and honour when Jesus Christ is revealed.
Wednesday, April 12, 2006
Yes I know I am late
Well, I have good days and some not so good days. Today I would say has been just another day of sleep. I haven't felt like doing anything. My mom is going really stir crazy. She wants to take me out and do something. And me... I don't feel like doing anything walking, eating, working on my computer, just sleeping is about all I want to do. So today I have been a lazy bump in a chair. My mom got the new Frank Peretti book the house less then a week ago thinking that it would take her at least 2 weeks or so to get through it, well she has now almost finished it.
Yesterday we went in to meet with the transplant team. They had pretty good news. My levels continue to come down so that is looking better. And of course they gave me more drugs to take. Now I am on some kind of diarrhetic to cause my body to pass this extra fluid, and they are going to try some sleeping pills to see If I can get more then just a few hours and start getting my strength back.
Yesterday we went in to meet with the transplant team. They had pretty good news. My levels continue to come down so that is looking better. And of course they gave me more drugs to take. Now I am on some kind of diarrhetic to cause my body to pass this extra fluid, and they are going to try some sleeping pills to see If I can get more then just a few hours and start getting my strength back.
Monday, April 10, 2006
Mom, I think I am having a baby!
So I had an interesting discovery today. I thought I went to get a new liver and I found out I am pregnant. What did they really do to me in the O.R. I have been having the blood test every week but the the pregnancy test hasn't shown I am positive yet. What does that mean? I think I have all the other symptoms though.-stomach getting bigger, starting to show
-cravings
-moody/cranky
-none of my cloths fit
-swollen feet/ankles
-low back pain
-can't touch my toes
-putting on lots of weight
-no bladder control, going every hour
-expanded hips
-walking with a waddle
-need help getting up
-cant lay on my stomach
-can't get comfortable, ANYWHERE!
Did I miss anything, for those who have been through it?
I just hope I don't have 8 more months of this.
Monday Morning
Well after yet another rough night, bed->bathroom->chair->bathroom-> bed->hammock->bathroom-> chair. I think I did manage to get about 4 hours of interrupted sleep in. 8:00AM comes way to early especially when you just find a comfortable spot and want to stay there for at least an hour. But the hospital needs my blood, and I want to be as good a patient as possible so we can get back on the fast track. The thing that amazes me is I sleep better in the morning then I do at night. I came back home from the hospital and slept till almost one. I still haven't felt like doing anything so it is one movie after another after another. I know I live such a hard life right now :-) If I am not careful I am going to start making everybody else jealous of my life, and they too will want to be cut open and have a liver transplant followed by rejection and mono.
Sunday evening
I find it amazing how many days all just start to blur into other days. When I look to see what progress I have made or changes. Things start to get real boring. Another night I didn't sleep well. Another sunday that didn't feel like sunday. I never realized or appreciated fully how much I enjoyed Church activities throughout the week. Not going to Church saturday night or wednesday, or small groups throughout the week or even Friday night live. When some says you can't go it makes it that much harder because I really want to I miss the fellowship with my family. And the it makes it harder when it is your own body telling you that I can't go to church because I don't have the strength or the energy. That feels like a stab in the back, by a close trusted friend. Come on body, get in line start fixing yourself so we can get back to the fun stuff.
Once again it is night time. My most dreaded part of the day. Can't get comfortable, then when I do finally get comfortable insomnia kicks in and still can't sleep. Which only makes me more tired, and then I start to feel sick because I am so tired which makes it even harder to go to sleep :-P I feel like I can't win.
Once again it is night time. My most dreaded part of the day. Can't get comfortable, then when I do finally get comfortable insomnia kicks in and still can't sleep. Which only makes me more tired, and then I start to feel sick because I am so tired which makes it even harder to go to sleep :-P I feel like I can't win.
Saturday, April 08, 2006
Been a bit...
Yesterday Friday, I didn't feel like doing anything at all I slept woke slept woke couldn't get comfortable, didn't want to eat. It was not a fun day for me at all. Don't be to shocked but I didn't even feel like getting on my computer or to post anything. The doctors called and said that some of my Liver levels continue to come down and a few of them continue to climb so they aren't sure what is up with me yet. I went to bed the earliest I have in a very long time 8:30. One of the blood test came back that I was positive for mono. Which might explain why I have been feeling so lethargic. My liver biopsy came back that the accute rejection is doing a little better. My chronic rejection is still there and is still going to be a battle
Today has been a little better. After a very rough night of not being able to find a sweet spot where I could get comfortable, I finally found it this morning at 10:00 and slept till about noon. I finally managed to work up enough energy to take a shower and then my mom and I went for a drive. It felt good to get out. There was a big part of me that wanted to stop by the Rock tonight for church but we decided that that would not be a wise thing in my present state. We did that once before and a few days later I was back in the hospital. Lets not push me over the top again. So now it is once again the dreaded time of going to bed and trying to get comfortable.
Today has been a little better. After a very rough night of not being able to find a sweet spot where I could get comfortable, I finally found it this morning at 10:00 and slept till about noon. I finally managed to work up enough energy to take a shower and then my mom and I went for a drive. It felt good to get out. There was a big part of me that wanted to stop by the Rock tonight for church but we decided that that would not be a wise thing in my present state. We did that once before and a few days later I was back in the hospital. Lets not push me over the top again. So now it is once again the dreaded time of going to bed and trying to get comfortable.
Thursday, April 06, 2006
Yet another day spent...
At LDS hospital. They wanted to see me again, I haven't been feeling right and just wanting to spend so much time just wanting to sleep. The doctors are concerned so they wanted to see me and determine if it is another battle of rejection (or a continued case of the same thing) or if it is an infection or something else. So once again my arms become pin cushions and I got 3 pokes because just one is never good enough they needed to get two. And because my vein didn't want to work with them they had to poke me a third time to get blood. There was a spot on my incision where some really gross puss had been oozing out and it stank really bad to they wanted to have a look at it (and I wanted them to see it to) to make sure it wasn't getting infected. They said it should be fine, it is just healing up. Then it was off to talk to another doctor who wanted to take another liver biopsy just to see if my liver is healing, staying the same or dying because if it is dying they want to re-list me on the transplant list send me back to the O.R. cut me open and start this whole last month over again with another new liver (at least new to me but already been used before, I really don't like that idea at all)
Lord Jesus, I am getting tired of this up and down roller-coaster ride, when is it going to be over? I am still trusting that You are in control and I just need to hold on to You and enjoy the ride. But my strength has given out long time ago, and now I am trusting You to hang on to me and give me the strength that I need to make it through this, wherever this ride is going.
Lord Jesus, I am getting tired of this up and down roller-coaster ride, when is it going to be over? I am still trusting that You are in control and I just need to hold on to You and enjoy the ride. But my strength has given out long time ago, and now I am trusting You to hang on to me and give me the strength that I need to make it through this, wherever this ride is going.
Thursday morning
Well I have finally done it. I have been home longer this time then my previous stay at home. I have gotten to make regular trips to the hospital but it is really nice living so close. The doctors are still concerned about me and my levels so they keep asking me to come back and give more blood and stuff for them to test. I thought I was going to have today off from going to the hospital but I was wrong. I will be going up for more blood work and have the doctors look at me. I slept a little better last night (not by much) so Hopefully I will have a little more energy today we will see.
Wednesday, April 05, 2006
I officailly feel like a pin cushion.
Last night after meeting with the doctors they wanted to do more blood work yesterday and wanted me to come in this morning for my normal mon-wed-fri blood work. Then I got a call today at lunch saying my levels have gone back up and that they wanted me to come back in and get more blood work to check and make sure that I don't have any other sickness in my body that is attacking my liver. So now I continue to wait to see what God is going to do in my belly. And sleep off and on when I can.
Tuesday, April 04, 2006
Tuesday Update
Once again I didn't sleep well so I spent another day trying conserve energy and sleep off and on through out the day. We met with the transplant doctors in clinic today. So they were looking over me lab values, and we told them all about how things are going with me how I am blowing up like a big balloon in the gut and feet, and not sleeping well. They say yup that is common side effects of the prednisone and all the other drugs I am on including insomnia. They don't want to give me sleeping pills right now because that can cause other issues. So I am going to have to stay on my current level for about another 2 1/2 weeks, because of my severe rejection, then they will look at tapering it off. Normally at this point they tapper prednisone off but I am not a normal case. They are still hopeful, but at the same time they are still worried. They don't feel they have control over this rejection yet and that I could revert back very easy. So I am suppose to avoid people that have the potential of making me sick like the plague! Oh I can't wait for the day when God's healing my body and this liver is finished and I can get back to a normal life. But in the short term I just pray for the strength to make it through another night. I am going to bed now.
Monday, April 03, 2006
Happier Picture
Wanted to thank everybody for their continued prayers. God is at work doing a good thing in all of our lives and we are witnesses to it. Just wanted to let people know that me and my mom are doing well. Some people might say they have never seen me looking so healthy. :-)
Nasty drugs
I hate the nasty side effects of drugs. My feet, legs, belly are swollen up really big retaining water. So here is a very unattractive picture. One of the side effects of prednisone. In about a week I went from 185 lbs to 215lbs. I feel overweight and bloated. :-( Thankfully I will be coming off this one soon.
I have to almost have my shoes untide so I can put them on, and socks wow they are tight after a bit.
I hope I don't burst anybody bubble...
For those of you who put a lot of faith in doctors, I now have experience that proves they are not always right 100 percent of the time. The doctors have told me that I should be able to eat anything I want there are no restrictions in my diet. Eat whatever you want. So the last few days I have been if it sounds good sure I will eat it. I have usually been getting full sooner then I was before the transplant so I am not eating as much as I once did but I have had a pretty good appetite overall. So what has been sounding really good is pizza, cheese, and Ice Cream. I had problems with that type of food not settling well before the transplant, so in the back of my mind I knew I should avoid them. Well last night all of my "splurging" finally fully hit. I was in so much pain from my intestines and gut I didn't sleep well at all I couldn't get comfortable and I was going to the bathroom what felt like almost every 30 minutes most of the night. I won't go into more details other then to say I was not having fun.
Once again I am learning my limits. I am finding I have a real problem always pushing myself right up to that line and usually going over it. Why can't I be content to stay away from it where it is comfortable and safe?
Once again I am learning my limits. I am finding I have a real problem always pushing myself right up to that line and usually going over it. Why can't I be content to stay away from it where it is comfortable and safe?
Sunday, April 02, 2006
After about a month of not doing anything I finally got stir crazy, and wanted to get out and see something different. I can't complain at all, I can be quite content most of the time where I am at. But today, was just so beautiful outside it hit me that I want to go for a drive and take pictures of something, don't really care what just want to be outa here. We went to Walmart this morning you know when the "Good" people are in Church, and the store is less crowded. My mom had a list of things she wanted to do today like pay bills :-( and I am like today is not a day to sit inside lets go for a drive. So I told her that we will come back and pay bills at night and mail them in the morning. Lets go! So we drove up to Park City and I had the window open, it was wonderful! I got to see the mountains again.
Then when we got home it was still so nice outside I went for a walk out on the street from my apartment to 600 E. turned around walked to 500E. Turned around walked back around the back of my place and then back home. No long distance marathon runner yet. But it was definitely a first to walk outside farther then to the car, car-to-store-to-car.
We even had time to still pay bills tonight to make my mom happy :-)
Then when we got home it was still so nice outside I went for a walk out on the street from my apartment to 600 E. turned around walked to 500E. Turned around walked back around the back of my place and then back home. No long distance marathon runner yet. But it was definitely a first to walk outside farther then to the car, car-to-store-to-car.
We even had time to still pay bills tonight to make my mom happy :-)
Aren't Pills fun :-)
This morning I have spent a bunch of time refilling my pill organizer and going over my drug list. For all those people that into drugs and pharacy stuff, I am now up to 34 pills a day :-) Breakfast (17), Lunch (3), Afternoon (1), Dinner(10), Bed (3). Some of them I will be on for the rest of my life, a lot of them I will be taken off of in June. But as the doctors watch my levels they keep making changes to amounts that I am taking, so it seems like I am always having to change the number of pills I am taking. I hate taking drugs even pain pills so I guess this is making up for all the years I didn't take stuff I should have.Prograf --- Immune suppressant
Cellcept --- Immune suppressant
Cyclophosphamide --- Alkylating agent
Urso --- Bile Acid
Asacol --- Anti-inflammatory
Valcyte --- Anti-viral
Sulfa/Trimeth --- Antibiotic
Clotrimazole Troch --- Prevents Thrush
Protonix --- Prevents Stomach Ulcers
Prednisone --- Corticosteriod
Magnesium Oxide --- Low Magnesium Levels
Saturday, April 01, 2006
April 1st - 30 years ago a new computer company started in a California garage making personal computers different then everyone else.
Good job Apple Computers! Keep up the good work! Happy Birthday!
http://www.apple.com
Good job Apple Computers! Keep up the good work! Happy Birthday!
http://www.apple.com
Home at last
Guess what... I didn't have nurses coming in to my room at all hours of the night nor did I wake up cause someone was opening my door. That part was very nice. I didn't sleep as good as I had hoped I was back to getting up every 2 hours but it was my bed and that part was very nice. Also my mom and Grandfather when I was in the hospital the first time got me a Lazy Boy Recliner chair that has a built in heat and vibrator. So I am really glad to be home so I can relax in it again.
And of course there is always something that has to be broke when you get home. We had Comcast internet installed Monday morning the day I went back into the hospital. So 11 days later I go to turn it on to update the blog and of course now it doesn't work, call tech support and they say they can't figure out the problem we'll send a tech tomorrow. We will see how long it takes to fix the problem.
Un-sponsored advertisement:
Since last night was my first night home from the hospital my mom asked me what I wanted to eat for my first dinner. I had already been thinking about this for while: Spaghetti, Pizza, Salmon, Steak. Were all sounding good but the more I thought about it spaghetti was what I was in the mood for. So I checked out Olive Garden's web site looking at there togo menu. We weren't going to eat in a restaurant but take it home. Fewer bugs that way for a dude who has no natural immune system. I also checked out The Old Spaghetti Factory (In Trolley Square) web site: http://www.OSF.com but they didn't say anything about being able to take it to go. We decided to stop by and find out if they did have it to go and if they didn't we were going elsewhere. Well the good news is that they do take out orders. So after 11 days living on hospital food my first dinner tasted OH OH OH so good. I got the undecided 4 sauce combination Meat, Mushroom, Clam, Mizthra Cheese, in the hearty size (extra big portion) with the Minestrone soup and sourdough french breed roll. My mom got the Manager special with Mushroom and Mizthra sauce. We were able to take it home and enjoy and save the left overs for later. The other really cool thing which deserves a very special Thank you. We told them when we ordered that this was going to be our first dinner after being in the hospital, and that I have been fighting rejection of a new liver. (I was wearing a mask, it feels funny like I am a germaphobic or something but right now I don't really care what I look like) When we went to pay the waitress gave us my meal for free we just had to buy my mom's. She said her father had gone through a heart transplant, and wanted to wish us the best of luck.
So I want to SAY a really BIG THANK YOU to the Old Spaghetti Factory. That is one meal that I will remember for a very long time!
And of course there is always something that has to be broke when you get home. We had Comcast internet installed Monday morning the day I went back into the hospital. So 11 days later I go to turn it on to update the blog and of course now it doesn't work, call tech support and they say they can't figure out the problem we'll send a tech tomorrow. We will see how long it takes to fix the problem.
Un-sponsored advertisement:
Since last night was my first night home from the hospital my mom asked me what I wanted to eat for my first dinner. I had already been thinking about this for while: Spaghetti, Pizza, Salmon, Steak. Were all sounding good but the more I thought about it spaghetti was what I was in the mood for. So I checked out Olive Garden's web site looking at there togo menu. We weren't going to eat in a restaurant but take it home. Fewer bugs that way for a dude who has no natural immune system. I also checked out The Old Spaghetti Factory (In Trolley Square) web site: http://www.OSF.com but they didn't say anything about being able to take it to go. We decided to stop by and find out if they did have it to go and if they didn't we were going elsewhere. Well the good news is that they do take out orders. So after 11 days living on hospital food my first dinner tasted OH OH OH so good. I got the undecided 4 sauce combination Meat, Mushroom, Clam, Mizthra Cheese, in the hearty size (extra big portion) with the Minestrone soup and sourdough french breed roll. My mom got the Manager special with Mushroom and Mizthra sauce. We were able to take it home and enjoy and save the left overs for later. The other really cool thing which deserves a very special Thank you. We told them when we ordered that this was going to be our first dinner after being in the hospital, and that I have been fighting rejection of a new liver. (I was wearing a mask, it feels funny like I am a germaphobic or something but right now I don't really care what I look like) When we went to pay the waitress gave us my meal for free we just had to buy my mom's. She said her father had gone through a heart transplant, and wanted to wish us the best of luck.
So I want to SAY a really BIG THANK YOU to the Old Spaghetti Factory. That is one meal that I will remember for a very long time!
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