Why on earth?

As you are well aware, SA did an ERCP with stent placement back in July. A month later, Big Bird was in the hospital-in ICU with a Cholangitis Infection.

This morning, they leave a message on the answering machine, they want to schedule another ERCP. WHAT IN THE WORLD ARE THEY THINKING?????????????

Big Bird called his nurse, waiting on a call back, if that doesn't go anywhere, we are calling his local doc and having him call and have a chat. Are they trying to make him sicker?????

SCREAM SCREAM SHOUTING OBSCENE LANGUAGE FROM THE TOP OF MY LUNGS!!!! ARG!!!!!

Follow Up Transplant Clinic Appt.

So Big Bird had a pre-transplant clinic appt. on Wed. He left very frustrated. His MELD score is 21. He is no longer #1 on the list, he is actually #3. Apparently 2 other people got sicker than him. Not that I don't understand this, it is just frustrating. I belong to the PSC Support Group on Yahoo-I really don't know what I would do without that fine bunch of people. I posed a question to the group-asking if the transplant centers kept you updated on your listing status. The general consensus was that no they did not.

I know that if he is to get a liver transplant, it will be when the time is right. I truly believe Heavenly Father's plan is much greater. I am comforted that I know this. It is just a frustrating situation to be in.

We are tethered to an imaginary leash-waiting and wondering. But at least we have humor, sarcastic and dry as it may be-but it is there. We have faith, that things will work out the way they are meant to. We have family-whom we yell at, love, cry with and hug. With all this I say Big Bird has it made for whatever the outcome may be!

Our Aunt Karen

I ask for prayers & good vibes for our Aunt Karen. She has recently been dx with cancer. My Grandma keeps assuring me that she is in good spirits, and I am glad to hear that. Just so you know Aunt Karen-we love you and prayers are being said, good vibes are being sent!!!!

Still Waiting

Big Bird is still waiting. He is doing ok. I think the antibiotics have all left his system, so now he is getting back to his "normal". Big Bird and Mom are heading to San Antonio tomorrow for his clinic follow up. They will redo his blood work, and meet with the hep doc just to keep things up to date. I will post when I know something. I will email his nurse for blood work results since they never seem to know it there.

Feel free to leave comments, we love to hear from everyone.

Poem

One of the members of the PSC group I belong to wrote this poem and posted it today, so I had to share, it is funny and whitty!

Keep Hope in Sight

Yellow eyes, jaundiced skin,

What a lousy shape I'm in,

Swollen ankles, sloshy belly,

Squishy like they're filled with jelly,

Itch and scratch, til it's sore,

Then I itch and scratch some more,

Cramping legs, cramping feet,

Stretch them out and then repeat,

Sleepy days, up at night,

Thinking isn't quite so bright,

Am I tired or am I lazy?

This itching's going to drive me crazy!

Colors seem to fade to grays,

As I'm feeling more malaise,

But keep a future hope in sight,

When yellow eyes will turn to white,

Fluffy ankles will deflate,

Maybe I won't sleep so late,

Surely I won't feel so drained,

Certainly I'll feel less pained,

Thank you Lord, there's hope in sight,

When yellow eyes will turn to white,

By transplant or Your glory bright.

Written by: Darryl Powlison

Who Is Big Bid?

It occurred to me that when I started this blog, it was to keep our family & friends updated on Big Bird's health and progress etc. It is hard to call everyone with all the info. But as time has gone on, it has occurred to me that our family & friends are not the only ones reading and stumbling upon this blog. So, I thought I would let you know a little bit about who Big Bird is.

Big Bird is my wittle brother. I say this as he is my younger brother, but he is actually 6'10" tall. He is also currently sporting a lovely tinge of yellow in his skin & eyes (mostly eyes right now-he is looking ok skin wise currently). Hence the name Big Bird (tall and yellow).

Big Bird has been sick since he was about 15 years old. He broke his leg, and things just spiraled from there. He starting "passing" blood, come to find out he had bleeding ulcers in his colon. He had to have a couple blood transfusions-he is actually surprised to have survived as his blood counts would be extremely low.

When he moved to Austin, and ended up in the ER with a colitis attack, we found his excellent Doctor. He was able to finally after about 5 years of dealing with the colitis, get it under control. Dr. Ziebert continued to keep Big Bird under his wings. In 1999, his liver function tests starting coming back abnormal. They did an ERCP and discovered that Big Bird had PSC. We were told that he would need a liver transplant in about 5 years. As time went on, he would get occasional episodes of UC, and occasional episodes of liver related infections.

In 2005 they did an ERCP and stated that stenting would no longer work that transplant was now an option that had to be considered. Well at this time, Big Bird had to insurance. Since his health was declining, energy fading, labs getting worse, itching becoming unbearable, with consultation from his doc we decided it was time to apply for SSDI. SSDI was granted, but the kicker with that is Medicare takes 2 years to kick in before you are eligible. He got a couple cholangitis attacks, symptom's got worse and we really started to fear.

On February 1, 2007 Big Bird got Medicare. On February 9, we were meeting with the Transplant Clinic. In April 2007 Big Bird was being evaluated for Transplant. In May 2007 Big Bird was listed.

Now we just wait. Big Bird is #1 for his Blood Type (type A) he has been this way for a couple months now. His labs will be redone next week when he has a transplant clinic appointment.

The last couple weeks have been really good actually. But as anyone who knows how PSC works, you NEVER know how long that will last. So you take each day at a time.

Well, that should give everyone who doesn't know Big Bird some background and even a little bit of explanation to his nick name.

Nap Time

After the trip to the dentist this morning to fix falling crown and a yummy breakfast taco breakfast, Big Bird, Aukee & Jasmine decided it was time to cuddle up and watch a movie this morning.

I had to laugh, so I snapped this photo while I was leaving for work. Aukee is such a nerd, doesn't he know yarn is not a pillow??

Caution-falling teeth

Big Bird's crown decided to fall out this afternoon. We had to call in to the dentist, so we are seeing him first thing in the morning. Then, we had to drive all over the place (which I try to avoid shopping on Sundays) looking for an emergency crown repair kit. Oh the joys!!!!

$18756.00

Four days in ICU.
Four packets of Fresh Frozen Plasma
IV Antibiotics
One Vitamin K shot in the bumbum
One EGD to remove previously placed Stent

Total comes to $18756.00

Boy am I glad I spent sometime reading all the Medicare Stuff and consulting with a Medicare Insurance provider to make sure he got a fantastic supplemental policy.

wowsers....just had to share.....

Grumpy

Ah, the Grumpy ones. Big Bird & Aukee......

Depression

Depression has reared it's ugly head. Not a good time for anyone that is around Big Bird. I hope it is just a short fit, but I don't know. He was so optimistic about getting a transplant soon, but that time has come and gone. He is really scared his liver is (in his words) "shot".

I really don't know what to do. It is hard to watch it, but what choice does one have?

We will stay positive, and keep our fingers crossed that he doesn't get another infection and a transplant comes sooner rather than later....

Still #1

We found out yesterday that Big Bird's MELD score is now at a 21. He is still #1 on the list, but only at his center. He is doing much better. Still has some liver tenderness, but overall much better. He has a couple more days on the Levoquin, so....fingers crossed.

Parolled

Big Bird was parolled this morning. One last push of IV antibiotics, then 10 days of levoquin.

But he is home. Have to go and fill perscriptions....He is in much better spirits today. I think he may even be making a WOW appearence this afternoon.

Poochie Therapy

We successfully smuggled in the Poochie for some "Poochie Therapy" last night. They were happy to see each other ;-)


Big Bird was moved to the 4th floor. So now he is very ready to come home. I think we are suffering a wee bit of depression-not that I can blame him. I just wish he would eat more. He has lost at least 10 pounds (I wish I could) through this whole ordeal. Not good for such a bean pole already.



He will hopefully be coming home today. I am getting ready to head to the hospital here in a few mins. So I will post when I get home.

We ARE getting out of ICU

They are working up the orders, and he is going to a regular room this afternoon. They want to keep him on the IV antibiotics through tomorrow morning, but doc said as long as the fever doesn't come back, he can go home tomorrow.

Since he is going to the regular room, I am thinking it is necessary to smuggle the Poochie in for some "pet therapy". Big Bird is certainly low on the Poochie kisses quota!

It has been a whirlwind of a week. Things were really scary Monday night, Tuesday and even into Wednesday, but Thursday has seen glimpses of Big Bird returning to himself.

Now we just hope and pray for a liver to come sooner rather than later, and that we won't have any more of these hospital scares before the big surgery.....

Much Better

Big Bird is MUCH BETTER. He hasn't had a fever since last evening around 7. There is even talk about him getting out of ICU today and moved to a regular room. Woohoo-he would really like to take a shower-and this would give him the opportunity to do so! If he gets moved, I'm gonna see about getting permission to bring in the Poochie for a visit, I know Big Bird and Poochie miss each other. Well all the fur babies miss him really. They keep going to his room looking for him.

As of now, he is still number one on the list. Not sure if they will change it since his blood work is markedly improved. I guess we shall see.

I will update when after the doctor makes his rounds and we can ask some questions.

Wednesday Update

Big Bird has been running a fever off and on all day. It was back up to 100.5 around 4 this afternoon.

They took the stent out, the doctor seems confident that this was the issue and things should just get better from here on out. They still have him on IV antibiotics, and well keep him in ICU at least through tomorrow. There is a possibility he might get to go home Friday-fingers crossed.

When things got scary, they listed his MELD score at 40-this is the highest it can go. This is his MELD score listing as of right now. His INR was down significantly to 1.47 today as well-yippie...

Really right now he needs a transplant, I don't know how much more he or any of us can take of this. He seems to be down right now. I left the hospital early tonight, he didn't get much sleep last night, so hopefully that won't be the case tonight.

Don't really have allot today......good I suppose.

fever, fever go away!!!!

Last night the fever jumped up to 103.....they decided to wave the 48 hours on antibiotics and take the stent out today. That will be happening this afternoon. So instead of fever decrease, we have fever increase. ARG!!!!!!!

Big Bird said he was doing ok this morning. Mom is on her way to the hospital now. I have to go into work for a couple hours to take care of a few things then I will be at the hospital.

This has been a report of the Big Bird broadcasting network.......

TIRED!!!!!!!

Big Bird was resting when I left. He requested saltine crackers-it is about the only thing he can keep down right now. Oh the exquisite taste of saltines ;-)

Fever was back this evening, 100.9 when I left. They changed up the antibiotics to every 4 hours instead of heavy dose of levoquin once every 24 hours. He will be in ICU for at least another 24-48 hours. There is a possibility that they will transfer him to SA at the end of the week, so I guess we just wait and see.

His INR is what has everyone jumping through hoops. It ain't a happy thing. All they can do for him is try and control the infection, control the pain and pray for a liver donor. How bitter sweet is that???? Hey can someone please die so my brother can have a life???? Crass I know, but I am tired and I really am just a snot right now.

I will post an update tomorrow, but for now, I am off for some very much needed sleep!!!

We are #1

Well it is official we are having a bout of cholangitis. Oh the remarkable joys. He is on a pain pump now to hopefully help control the pain-we shall see.

It was the INR that was throwing loops this morning. It was 6, it is now 3.36, still high, but better.

But with this latest development and the INR numbers we found out this afternoon that he has officially been bumped to #1 on the transplant list for his blood type at his center. Scary news...

I have the RS president coordinating with the bishopric to get someone down here to get a blessing so hopefully that will be happening this evening.

That is the latest from the deluxe ICU suite....will let ya know more when I can.