What a month

I am again sorry for my delinquency in updates. It has been a real roller coaster ride for the last month and a half every time I got ready to update the status it would change. Things would look good then turn bad, Roy would have a good day then by the end of the day it would change. It is never fun to send out bad updates. Now I will try and catch you up on the last month.
The Big news is that Roy and Beth got to come home from Phoenix on Friday Aug, 6. I was at Scout Camp with my two other boys for the week. We were reunited on Saturday morning. Roy has lost over 70 lbs since his donation. He looked frail and yellow. His bilirubin was finally down below 10 it was at 8.9. He still was very fatigued and was having trouble with nausea but the doctors felt that he was able to make it home. Beth got home to help get things ready for RaeAnn's wedding that was one week away.
On Tuesday we took Roy in to get his blood work done and his bilirubin had gone down to 5.4 (Yes and there was MUCH REJOICING YEA!!!!). Through out the week we continuted to see Roy's color improve and his stamina start to return. He has a long way to go but it is great being able to see the improvement. HE still has an internal-External Drain line in to his liver but it is capped were it exits the body. If he continues to improve in 3-5 weeks he will go back to Phoenix to have it removed. Then he should be very close to being released.
We are hopeing that they will start Physical Therapy this week with him so we can help him build back the strength he has lost.

We made it though to RaeAnn's Wedding and it was a wonderful day. Thanks to all the great people that helped get things ready it was a truly great day! I will try and post some photos of Roy and the wedding. IT was a great day.

I continue to get better by the day. I some times get discouraged that I am not going faster but as I look back I can see steady progress daily. I am hoping to be back in uniform by next week Monday the 22 the 2 weeks of FTO training and I should be back to full duty. I am very excited for that.

Life has yet to slow down for us a bit nor do I think it will we just hold on tighter and try to prepare for what comes next. I want you all to know that I Know that I have a Heavenly Father that truly loves me and knows me personally. He has supported me through this and all my other trials. He is there for me and I am very thankful that He has given me so many blessings. May each of you fell His love for you and continue to enjoy the blessing in your life.
Thanks again for all you have done for us!! With all my Love Jeff & Beth Long

What a Week of ups and downs.

What a week. AS of the last up date we saw Roy's numbers improving and his body was starting to wake up and get back to normal. His Creatitin and INR continued down to normal levels. His liver functions were still elevated. The good news is that the liver function numbers have started down. They are still elevated but have continued to drop.

Friday they released Roy from the Hospital. Beth was able to obtain a room at the Arizona Transplant House (http://www.aztransplanthouse.org/) right next door to the hospital. They got to stay about 8 hours before Roy was running a high fever and was throwing up. He went to the ER there and they readmitted him. They ran several tests and found that he had a infection called Clostridium or C.Diff. They quarantine him and put him on IV medications. The good news was that his liver functions continued to decrease though this.

Sat, and Sun, he endured the hospital and he started to get some of an appetite back . They released him Monday afternoon and he and his mother went and saw a movie. Roy said he did not want to go sit around and get feeling bad and get put back in the hospital.

I am sorry that I have not gotten this update done sooner bit I have been busy. I put in a 60 hour week and it felt really good to work that hard. We had a great 4th of July. But we missed Roy and Beth!!!

We had a family party for Ashlee on Monday Night , We brought Pat over and Betsey,Trent and there kids came down and we all had dinner, Cake and Ice cream, and watched Ashlee open her present.

Thanks for continuing to pray and think of us. We know the lord is continuing to poor out his blessings upon us.

Monday update.

Well the news is continuing to improve. Roy was moved out of the Intermediate care unit to the surgical care floor. They have removed the cath, and IV's from hands. He still has a "pick" line in his arm and two Drains coming out of his body. The external one from the liver is still in place, and there is a new drain coming out from the surgery site to drain excessive body fluids.
Roy's kidney functions and INR are back in the normal range now we are back waiting for the liver functions to drop. Roy is still baffling the doctors with why is liver functions are not coming around. Beth says that Roy has knees again as his kidneys have kicked in and the swelling in his legs have gone down returning them to normal.

I want to thank all of you that have taken the time to drop us supporting emails, texts and comments on the Blog site. They are all appreciated, I am sorry that I am unable to reply to all of them. Please know that each one is treasured and touches us as we read them. We have been so blessed throughout this process by such GREAT friends and family supporting us. I will never be able to thank you all!!!!

Sunday Morning improvment

Well the day dawns brightly here in Idaho as well as in Phoenix. We are very happy with the reports we are getting from the doctors. Roy had a rough night of sleep but lots of improvements. His numbers this morning are Bilirudin is 17.1 Creatinine 1.5 INR 1.45 That brings his MELD down to a 25. This is movement in the right direction. Roy is celebrating that he can have clear liquids. Beth reports he savors his juice like a wine taster savors fine wine. I hope this brightens your morning like i has mine.

Sat enening updat

Well it has been a very busy week. As most of you are aware Roy has had a rough time. His MELD score yesterday morning was 40 and the Liver doctor wanted to list him for a transplant but the surgeon felt like that was premature and that he was just having a hard time getting his body working again.

Today has been much better his MELD this morning was 30 he is seeing his kidney output climb and his creatinine levels fall (a Good thing) His INR also fell (also a good thing) Although there was a climb in his bilirubin.

These evening we saw more drops in the Levels and his bowls are starting to show signs of life and we expect some major movement in the next 24 hours.

So we feel the prayers are helping but he is not out of the woods yet. I will try and Keep you posted.

I major highlight for me is that his nurse today (Jim) was my favorite nurse from when I was in the hospital and I told him that With Jim as his nurse I knew he would be getting better quickly.

Out of Surgery

He made it out of surgery about 930 pm AZ time. Dr Mulligan briefed us and he said that the surgery was very long because of the all the scar tissue. He said that he was able to get all the ducts open and has remove all the stints. Roy still has the external drain in and that will keep it for about 10 days. He will go to the step down unit for the night then moved to three west should be in the hospital for 4-5 days. The doctor said that Roy's liver had regenerated about 130 percent of the original mass.

Still in Surgery

Roy went to surgery this morning at 0730am. It is now 730pm and he is still in surgery. A member of the surgery team just came out and that Dr. Mulligan new that we would be worried but he wanted us to know that it is take a lot longer then excepted but he is doing well. They had a hard time isolating the bile duct that had been giving Roy so much trouble. He Finlay got it and the Roux-en-Y is done now they are waiting for he the radiologist to place the stints in place then they will sew him up. It has been very hard on Beth sitting there waiting. But, as she put it, thanks to two angles that came and sat with her today she has made it this far. Thanks Debbie and Julie. Look for another update in a couple of hours when he is out and we know something.

Just a side note I think it was esayer to go through the surgery then be here waiting for word.

not so good update

Well since we last updated you, things have not gone to well. All though we saw a decrease in Roy's billiruben Wednesday I am sorry to report that he did not continue that way. I left for home on Friday morning as Beth and Roy headed to the Mayo for a blood draw. Roy's billiruben went from 12 to 18. Yes that was the wrong direction. They took him into the cathlab and checked the intervention. The doctor said that the intervention was doing what it was suppose to. .
Today they tried to find the way through the blockage and found that the ducts were collapsing. They were not able to get through. Now they are planning on full surgery tomorrow at 0730. Dr. Mulligan is going to have to "re-plumb" the bile ducts. The procedure is called a Roux-en-Y. They will be redirecting the flow from the blocked area directly to the intestine. If everything goes good he will be in the hospital for 4-5 days then he will probably need to be around there for a few more weeks. He will have another 4-6 weeks of recovery after that. Thanks for your care and concern and please join us in praying for Roy.

Wedensday Morning briefing

Here is the latest.

Roy had a procedure Tuesday morning they put him out, and then went in and placed a drain inside directly to the biliary tree. This was to drain a area that was full of bio and acting like a reservoir behind a dam. They were unable to see the actual blocked area because of all the backup and are hoping that after reducing the backup and leaving a external drain in place for a week they will be able to see the blocked area. Then they will try and pass a wire through it and expand a balloon in the restriction, then place a stint in to keep it open. If this works then he should be able to come back to Idaho for 4-6 weeks then he will have to go back to have the external drain removed. After that he should be cleared to go back to Seattle. But at this time that is a ways off.

He spent the night in the hospital. This morning there was a decrease in his billiruben to 12 on Monday he was over 15.

We hope to see another big drop Friday when he gets his next blood draw. He is back in our hotel room resting comfortably.

Thanks again for all your prayers

Monday Might Update

Well they finally gave me my clothes back and let me get out of the Hospital Gown. They got a nice sample of my new liver to look at and I will find out the results on Thursday. I am doing Great! Not having any trouble associated with the procedure.

Well enough of me. Let me tell you about Roy. As they let me leave the hospital it was only to get Roy. He had three hours of MRCP's (MRI's with different contrast dyes) They were trying to get diffrent views to see what was causing the climbing billireuben. At 530pm We received a phone call from the Surgeon telling us that he and the other doctors pow wow ed and feel like they have a good idea of what the problem is. They feel like that his liver has grown so well and quickly that one of the major bio duct that drains a majority of the liver to the main bio duct is getting squeezed off. It is being compressed between the liver and the kidney. This location has made it very difficult to visualize with the imaging they have all ready done. They were also unable to see this restriction when they were doing the ERCP.

SO now the plan is to start at 0630 Tuesday. They want to insert a stint using ultra sound to guide the doctor. They want to place this in the duct that is being compressed by the kidney. They think if this works that we will see improvement quickly. If they are unable to get it in then Roy will have to have a full surgery to have the bio ducts "re plumbed". We hope and Pray that this will not be required. We hope to have some Good news to report tomorrow night.

As always your prayers and support are gratefully appreciated.

I am doing great! I am sitting hear in the hospital on a gurney in an "air conditioned" gown waiting to have a 12" needle stuck into my liver. Doesn't that sound like a Party!

Roy is not so hot. He has had a tough week. On Tuesday they did an ERCP and placed drain straws in his bio duct to help the bio drain but instead of going down his numbers went up. They put him on some meds that seamed to help at least stabilize him over the weekend. He is in having his blood tested now then we hope to have a clear plan of attack by tomorrow.

Please keep him in your prayers!
Sent from my wireless Blackberry handheld device.

Thursday Update.

Thanks You so Much for all your thoughts and prayers!!!

Roy, Beth and I made it to Phoenix Sunday just in time for his 3 pm blood draw. We then checked into our Hotel. We did some shooping for groc. then called it a night. We were all up early monday and at the Mayo by 0530 am. We got Roy checked in then he got to sit and wait till 8am for his procedure.
I had my blood drawn at 630 and then Beth drove me over to my training class and then went back to the hospital to be with Roy. When Beth got back to the hospital they were just finishing up with Roy so that worked out well.


They did an MRCP on Roy at 4 pm he meet with the surgon. They told Roy that they found just what they thought they would that his Bio ducts look realy good except in one spot. They said the one spot was narrow and they were unable to see it very well. They thought they could do an ERCP and dialate it with a ballon then insert a stint to keep it open. His Billirubin was 10

On Tuesday at 2 pm they did the ERCP and they were very happy with the reuslts.

He stay around the hotel Wedensday, Then today he went and had his blood checked again. We were disapontied in the results his Billirubin was 13.4 not the direction we wanted it to go. They put him back on Ursadial and sent him home they think it will improve tommorrow. Thats what we know now. We are hoping that he will start improving very quickly. The Doctor thinks they will be able to let him come home on the 17th when I am through with my tests.

We will try and keep you informed.

"Long" over Due

First I want to apologize for talking so long to update this. I keep hoping that I will have some great news to post and it just isn't happening.

A lot of you have asked what is happening with Roy and I. Well lets do the easy one first. Me. I am doing Great. I am back to work full time although not back to full duty yet. I still have restrictions from doctor from lifting and exercising other than walking. So I have to wait a little while to get qualified to get back in uniform. I have been able to go out and Re-qualify with all my Duty weapons. I have taken back the reins to the Law Enforcement Program in Idaho Falls and am supervising the other offices.

This Sunday I was to travel to Phoenix for 1 week of training and then the next week I have my 4 month check up at the Mayo Clinic. My blood tests seams to be doing really well most of my numbers are back in the normal range. This part of the liver Roy gave to me is doing great for me. The Doctors tell me it is 90-95% grown back to a normal size. In two weeks we will know a lot more about it.

Now for Roy. He has been up and down. Ever Monday we have gone in and blood tests then on Tuesday the Mayo Clinic calls and tells us the results and the plan of action. He had 2 bad weeks here 4 weeks ago then he had 2 good weeks. But this week his blood went really bad. The Surgeon really wants him back in Phoenix for test. So It looks like we will all be driving out Friday morning for the Mayo Clinic. We will leave the three youngest kids (Ashlee, Aaron and Timothy) at Mom and Dads in Kanab on our way through. I will turn in my flight to phoenix and travel with Beth and Roy to Phoenix. Hopefully the Doctors will get this figured out. One doctor speculates that as the Sphincter that was the issue before healed that it constrict back and may be causing this if that is the case this should be an easy fix. But we just do not know at this point.

So once again we will be appreciative of your thoughts and Prayers in our behalf.

Just to up date you on other family members. Beth and the kids are all out of school for the summer.

RaeAnn has decided to Marry a young man from Pocatello. His name is Ray Robert Ricks. They have chosen to be married on Friday Aug 13,2010. So this is keeping us all pretty busy getting ready for this.

RaeAnn is back in IF living with us for the summer and working as a procurement clerk for the Idaho Falls BLM.

The three youngest are still trying to figure out what they can do for the summer. They are all getting up every morning and going to the Gym with their mother.

I hope this gives you some Idea of what has been happening.

Thanks again for all the though and prayers, they truly support us through our trials

Our Home Makeover

Some of you faithful readers all ready know about the changes that occurred at my house while I was gone to Phoenix. Some of you actually participated in it.

I wanted to take a few minutes and share with all of you what wounderfull friends we have in in Idaho Falls.

While we were in Phoenix some (most) of our wonderful neighbors cleaned our house. but that wasn't enough for them they Totally redid the upstairs. I have attached pictures of the house in a slide shoe to the right. You can see that they redecorated, painted, replaced and updated our house. Those of you familiar with the house can see he difference others you will have take my word for it. It was a true makeover. The walls were painted, carpets cleaned floors and cabinets scrubbed. it goes on and on.

I do not know most of the names of the people involved but please accept our heart felt thanks.

I have waited so long to post this so as not to ruin the surprise for Beth.

They are on the road between Provo and Idaho Falls. We will be so happy to see them hear this evening.

Happy DAY!!!

Just got word Roy is comming home and Beth with him. YEA!!!!!!!!
Did I say YEA!!!!!!!
I will give more details when I know more.

Jeff

Some Good News about Roy

Today's Blood work looked so good to the Doctors that they went ahead and pulled the drain. YEA. His numbers were all lower and they were happy with the progress. It looks like if this continues they will release him to come home to I.F. MONDAY so we should have Beth and Roy home by Thursday or Friday. Roy sure sounded positive. Keep praying for a good weekend.

Roy's lattest

Well I have been busy and have not gotten to the Blog. There hasn't been much new news so I haven't been very diligent in getting it out. As of Tuesday Roy's Bilirubun has dropped a little and his liver enzymes have both gone down a little but not enough. The doctors said that there still is some fluid in the abscess and until they get it out they do not want to release him. It would be like letting him go with a live petri dish inside him. They replaced his drain again this one is the same as the last but they thought the old one was clogged and needed replaced. While they were at it they "stirred up the Pound" and tried to brake up the abscess to allow for more draining. Beth says that it was successful as the quantity and color of the fluid collected in the drain has changed.

I have attached a recent picture of Roy. He still is my Hero. We love him and are so proud of him for the sacrifice he made and is making for me. What a MAN. He is the MAN!!

Still Partly "Son" ny report.

Once again It is with some disappointment that I wright this update. Roy had a "Good" visit and got a good report from the Mayo Clinic today but not "Good" enough. His blood work is moving in the right direction. His billirubin is down to the 4 range but his liver enzymes are still elevated. The doctors believe this is caused by the antibiotic he is on so they are changing the antibiotic to see if that will help those numbers. They said the abscess of fluid has shrunk significantly but there was still more to get out. So the drain stays in.

Right now the Plan is for Roy to return to the Mayo for blood work on Friday, then back on Tuesday for another cat scan and check with Dr Mulligan.

This means no joyous meeting for our family in Provo this Friday. We will have to do without for another week. Please keep your prayers coming for Roy he still needs them desperately.

I am doing well. Spent from 9 am till 530 pm working and running errands around town made for long day and I am very tired now but it feels great to be able to do so much. Hope I didn't overdue it to much. We will see how I feel tomorrow.

Partly "Son ny" report.

Beth reported on Roy's appointment to day. His blood work came back better, but not quite good enough. His billiruben was down in the 5 range but his liver enzymes were elevated but they think it is because of the antibiotic he is on. They want him back for tests again on Wednesday and they will advise us more. We are hopping that they will let him go then and we can all meet in Provo on Friday Night. My Sister Debbie is getting sealed in the Manti Temple on Saturday so we are planning on driving down to Provo Friday night and on to Manti Sat. then after the sealing we will head home to Idaho Falls. Yea!!!

There was some great news for me today. Roy asked Dr. Mulligan, the Transplant team head surgeon, about when he would be able drive. Dr Mulligan said he could drive today. Roy then told him that they had told me that I could not drive until the 4 month check up Dr. Mulligan laughed and said that I could drive now but feel free to hold it over your dads head a few days. My wife had compassion on me and told me the truth. So get of the sidewalks here I come!!!!

It will be nice not to depend on others to get me around to little things.

Yes I know I spelled Son ny not Sunny. I meant to do that.

4-1-10 1700 hours

Roy update:
The abscess of fluid in Roy's abdomen was at 12cm is now at 7cm they are putting a bigger tube in to suck the rest out. He then will be released to the Hornes tonight on oral antibiotics and pain meds. They want him back on Sunday for blood draw, then Monday reevaluation with Dr Mulligan and possibly release. Dr. Mulligan is insisting on the bigger tube to increase the rate of drainage, in order to get him home(to Idaho) sooner.

not an april fools day joke!

Just talked with Beth and got the update on Roy!

The news seams good this morning

His Bilirubin level is down to 6.9
His White Blood cell count is at 9000 as opposed to 23000 he was at when he was put back in the hospital Sunday.
He has as a CT around 1000 am, He is walking around in good spirits. They are thinking that this was the problem all along causing the high bilirubin count and infection.
Dr Mulligan is making the calls but they could possibly leave the hospital on antibiotics soon.
Beth is hanging in there she is ready to be past this but hanging in there.

I am doing GREAT

Monday update

Well this weekend has seen things change rapidly. As you can see I made it home Sat. at 8 pm.

Roy had to stay in Phoenix because they were not happy with his Liver numbers. Then Sunday Roy went and had his blood drawn and they called and said his Billiruben had drooped to the7 range (a 2 point drop). They were happy with that but did not like his other liver enzymes. So they said come back on Tuesday and we will try again.

As Sunday progress Roy got sick Nauseated and started running a fever. Beth called the Transplant team and they said bring him in to the ER at Mayo. So off they went. When they got there, one of the Transplant Team's surgeon was waiting for Roy and they admitted him directly to the Hospital.

They had trouble starting an IV on Roy because he was so dehydrated. They ended up having to call in a specialist with the ultra sound scanner to get it started. It is doubly bad when you realize how much Roy hates needles and had to endure.

They did get the IV established and pumped fluids in to him then started him on Antibiotics Monday morning.

Beth spent the night at the hospital with Roy. They were not prepared to spend the Night and Debbie Horne had driven Beth and Roy to the hospital so they were without anything.

This morning Mark Burn NP order a wide spectrum antibiotic IV for Roy every 6 hours. At 1230 they came and took him down to radiology to do an ultra sound. Then they took him directly to catscan to get a better picture. Then they put a drain in him to drain a large pocket of fluid (abscess) they had located in his abdominal cavity. They sent some of the fluid to the lab to culture. They then brought him back to his room and he is now on antibiotics and Pain medicine. Roy says he is feeling better and breathing better.

Beth is settled in for another long night at the Mayo with Roy. Next to not liking needles he dose not like being left alone.

This morning I got up and started at 0700 I had to go to the lab and set up the process for them to do my weekly draw and get the info to the Mayo Clinic. They are now expecting me every Monday at 0800 for the blood draw.

It was fun to see the people at the lab that have drawn my blood for about three years. They were all excited to see how good I look. While walking through the halls I walked in to Karen Lugo. It was great to see her!!!

My kids then took me out to Perkins for breakfast. That is were the picture was taken. From there we went to the office and spent 3 hours at work I am not sure there was a hole lot of work done on my part, but I was glad to be there and see some good friends.

Well I had a great day. I did over due it some but am excited for how good I feel. I am sorry that I have not keep you all better informed with what is going on. It is tough for me to get everything done. I am sad that Roy is not home healing with me but have faith that all will be well.

We're So Glad When Daddy Comes Home!

We are so excited to have Dad home and Dad Is so excited to be home. We are hoping Mom and Roy will be able to join us this week. Dad is loving being home and was able to go to church for a couple of hours today. He is still really worn out but has so much energy he doesn't know what to do with it.

~RaeAnn

Travel Plans revisited??

This Picture is the doctors diagram. The upper left lobe of the liver is illustrated (this is what is left in Roy). The tubes are the bio ducks draining the liver. As you see the main bio duct drains from the Liver to the intestine. The dotted line represents where the liver was cut and split.

The circle at the bottom of the Tube represents where the sphincter muscle was stretched to allow for more bio to drain in the liver. The stint was placed in the duct from the sphincter to the just below were the duct branches. This stint was removed and the Doctors felt like they did not need to replace it.

I hope this picture may answer questions for all of you.

Well happy Friday. We are starting to get use to spending Friday's at the Mayo. We started out at the Mayo this morning at 0730 having blood draws. The good news is I was cleared to go home.

Roy however was a diffrent story. His blood work showed that his numbers had not gone down. So the surgeons decide that they needed to go in and remove his stint. They took him in to have the ERCP at 1700, we just got done talking with the Surgeon and they informed us that Roy was doing well. That things looked good and that they had removed the stint and things appeared to be draining well. He did not know why the stint did not allow the bio to drain but every thing looked good. They were able to insert die and watch it drain and it was draining good. He drew us a picture and I will paste it above with some explanations.

We are not sure now when Beth and Roy could get to come home they are hoping Monday morning.

Our plan now is to fly me home tomorrow. Then Beth and Roy will stay around here till they release Roy then they will drive on home.

I will post this now I am sure there are lots of questions out there fire them off to me and I will try to answer them.

Jeff

Trying to keep hopes down.

A very dear friend of mine from High School, Tracy Nyland, sent her oldest son Kent to visit me this afternoon. He brought with him a gift and a card. I had my son take a picture of Kent, Beth and I together and here it is. I know some of you reading this will understand these are viewed by me as sweet tender mercies of our Lord. We are so blessed. Thanks Tracy for sending some more my way.

Yesterday we had a great visit from the Crooks and the Cases. They are very special friends and neighbors from Iona. They came down here to Phoenix to visit and stopped by to visit us we sure enjoyed seeing them. Wished I would have thought about taking pictures with them.

We are trying to not get to excited about being released to go home tomorrow. Roy and I both have appointments tomorrow with the Surgeons. We except to both be released to go home. We (Beth) are packing the car so that in the morning we will go to the hospital for the Blood draw at 730 am then I have nurse and Dr followup at 0900 and 0930 and a visit with the fiance people at 1000. Roy has blood draw at 0900 then Nurse and Doctor follow up at 1000 and 1030 then we should be on the road to Kanab.

We hope to get to Kanab in time to Take Mom to dinner at Escobars.

We plan to spend Saturday in Kanab at my parents house. We will be happy for any visitors that may want to stop by. Right now we do not plan on going any where special Saturday.

Sunday morning we will be back on the Road. We plan to go to Orem and spend the night there. Visiting some family and friends.

Then Monday on to home.

We have had some very special visitors come by and see us while we have been down here. I wish I was more on the ball for the other visitors and taken photos of their visits but we did get one today.

Tuesday march 23rd

Well we made it through the weekend with no trips or calls to the Mayo. Roy seams to be doing considerably better today. He has cut way back on pain meds and is trying hard to stay positive. His color is still very yellow but I think it is starting to let up a little. His attitude is better today but he is still tired and lethargic.

I had a great visit with the Doctors today. They said they are very happy with how my recovery is going. They think I am at the point that they do not need to see me weekly in the clinic. I still need to have weekly blood draws but this can be done at a local lab. The Doc. said that he would talk with the surgeon and would take out the rest of the staples on Thursday then I would be released to go home.

I am hoping that both Roy and I will be released Friday to go back to Idaho. If that is the case, we will be heading to Kanab, on Saturday spend Saturday and Sunday there then head to Provo, Monday, Then maybe head home Tuesday. That will allow us to spend at least some of spring break with the Kids.

I was disappointed that the Doctor fells I should not drive for another 2 months. I am not very happy about it but I will do what they say. I know that the doctors are in it for me and only want me to get better. So I will have to bum rides to work for a while.

I guess the take home message from this Blog today is Life is Great. The Long's are still receiving the flooding of blessing from a loving Heavenly Father. We are blessed by so many wonderful friends and family caring for us.

Thanks again for all you have done to help us on this journey. I will try and get some photos of Roy and I tomorrow and post on the Blog so you can see us.

Friday afternoon.

Well today has been a little disappointing. Roy went in and had his blood tested and the Doctors were not happy with the results so today at 2pm they scheduled him for an ERCP (basically a scope down the throat and then up in to the bile ducts of the liver). The thought is that where the Bio ducts meet the Stomach there is a muscle similar to the sphincter muscle. It is believed that this muscle is constricted and not allowing the Bio to flow out of Roy's liver due to the trauma of the surgery. They are hoping to go in and stretch this muscle out. If necessary they will put a stint (small straw) in there and they may have to leave it in for up to two weeks. Roy is in the procedure right now (1700 hours). We will let you all know more when we do. Thanks again for all the prayers on our behalf.

Well before I could get this posted the Dr came out and informed us on how things went with Roy. He did very good through the procedure. The Dr. felt like what they suspected was confirmed. He was able to insert a stint in the common bile duct and stretch it out. He said it was like using a faucet that wouldn't open more than 1/4 of the way. The doctor felt that thus will really help Roy recover fast now. They will check his blood on Next Friday but the Dr thinks that he will be ready to go back to Idaho. He will need to come back to Mayo to have the stint removed in about a month but the Dr says that he should be ready to go back to his mission unrestricted at that point.

Roy did well through the procedure but because of the sedation medicine he is quite out of it tonight. He is sleeping on the coach this evening and his mother is staying right by him. We will hope to start seeing big changes in him tomorrow.

thrusday update

Just a quick update on the Doctor appointment from today.

Had a really good week here for me.  The surgeon removed about half the
staples from my incision.  They are relay happy with my blood tests.  The
new Liver is doing great!  All liver test are down in the normal range.
The big concern now is repairing damage caused during the years of dealing
with a sick liver.  The doctors feel that most will self correct over time
but in the mean time I will have to be careful.  Roy seams to be doing a
little better to day hopefully the numbers keep going down for him also.
We will talk next week about when they will let me come home. I am holding
out to be home by the first of April.

Thanks again for thoughts support and prayers

The Longs

A lot of you have already seen this update from Roy. I thought it important to hear from him, how he is feeling. I can tell you that he is doing well. Although the Dr. would like for him to being better they are not extreamly worried. We took some pictures this afternoon out in the yard I think you can see form the pictures that we are doing great. I sure wish Roy could wake up in the morning and be over this issue. I still know beyond a shadow of a doubt that we are blessed and be looked after. Hope to have some great news for all this Friday. My report from the Dr was good yesterday. They removed some of the staples in my abdomen. They thought I was doing as good as as could be. They said that they thought by Thursday they may be able to remove all the staples and the drain they left in after the follow up surgery. I have been able to reduce the pain medications and hope to be able to continue on that path. I hope you all have a great week . Thanks again for all your support and prayers.
Jeff Beth and Roy

(Roy's Email out today)
Hi everyone,
my dad is forcing me to write an email seeing as I haven't written one in a week or two. I'm sorry if my lack of email has been offensive to you. I'm just tired all the time and I don't care for reporting bad news or even just stagnant news. My health right now is not the best. The doctors have been a surprised to find that I'm not healing as quickly as they expect from a Donor especially a young healthy one. Normally donors turn the corner and are really starting to feel better in the beginning of the third week. I am feeling somewhat better and my incision is healing up very nicely I'm able to do a lot of things for my self and I can walk around do stairs, and I've reduced my pain pills to 2 or 3 a day as opposed to the 4 that have given me permission for, however my bloodwork just doesn't want to get better. This means I feel tired a lot my body isn't getting rid of a lot of the toxins it should. That's why I'm still here in Mesa, Arizona. I'm still Yellow. My bellirubin is the number they have been watching closest its supposed to be close to 1 and right now its at 9 they had threatened me with a procedure tomorrow if my numbers didn't improve they did a little so they'll hold off until Friday. Don't worry its not as bad as it may sound, its just tiring frustrating and not the happy kind of news that I would like to be giving, but that is the way things go. Lots of love talk to you later
Elder Long
or maybe
Roy Long
I'm not really sure right now I don't know if I'm a missionary or not. Lots of love talk to you later.
I included some pictures of me and my dad stand in the backyard of the house we are staying in
hope you enjoy

looking forward to a weekend away from the hspital

Good Friday Morning!! I hope this finds all of you doing well. I am doing GREAT here in Sunny Phoenix. It is hard to believe that just a week ago I was taken back to surgery for some leak repair. It has been a week of numerous improvements but no set backs for me this week. We are still not discussing the coming home part.

I still am having problem with shacking/tremors from some of the anti rejection drugs I am on. My blood tests look really good (0r so the DR. Says),. The doc even committed on the fact that my new liver functions were perfect. I AM SO BLESSED!!!

Roy is not having such a good time of it. He is not seeing improvement in his liver functions and as of yesterday his bilirubin was 8.9 that is bout 8.4 to high. The doctor ordered some more test but is fairly confident that it is just a mater of time before the reduced portion of liver regenerates and takes charge again.

RaeAnn made it back to ISU and is spending the Weekend with the symphonic band in Reno preforming at a university music directors conference.

The boys seam to be doing good with the Rockwoods. Thanks Ann, Doug and Scott for helping them out at this time.

Ashlee seams to be plugging away with those things most important to her. Thank You also Dave and Gwen for all you do to keep this family functioning.

There are so many others out there touching our lives in so many different ways.

I have an appointment with a diabetic specialist to check and see what these drugs are doing to me. After that We have no appointments until Tuesday. We are looking forward to several days in a row without a Mayo Clinic visit.

We are excited for our dear friends Joe and Stacy Bice to come and visit us this weekend.

I was telling Beth yesterday that is hard to think of my self in the "Post Transplant" roll. My thinking is not catching up with the reality of the situation.

Thanks again for all your support through this. Fill free to call write, email or stop by for a visit. take care Love the Longs!

Second Surgery update

Dad got out of Surgery about 6:00. He is doing good. The Surgeon said his intestines were pushing against the spot where the hernia had been and caused some muscles to rip. they had to add some fake skin called Adema and push his bowls back into place, apparently they had been trying to fill in the spot the hernia was. All in all everything is going good now. Dad is in recovery right now but should be moved up to the third floor by the end of the night, he is excited to see his old friends there again. The Surgeon said everything should be fine now and all we have to do is make sure he is careful in his lifting because he could easily get another hernia.

RaeAnn

The First Bumps in the Road

Well we are currently experiencing our first "bump in the road." Dad went had a doctors appointment today about his leaking. A surgeon was called in to take a look at his incision to make sure that it was not the cause of the leaking. As she was examining it they discovered the main muscle in his stomach had ripped where the stitches were. So Mom and Dad are back on the second floor OR undergoing more surgery. They do not expect it to last very long but he will be in the hospital for a couple of days. We are still optimistic that they will be able to come home by the end of April.

RaeAnn

"Still leaking" or "leaky still"

I know it has been a few days since I have updated the Blog Site. So I will try and catch you all up. First RaeAnn has returned to Idaho and school.Our neighbors down the street,Paul and Alesia Schwieder, drove over from Sand Diego on Saturday and went to the Mesa Temple. Then joined us hear at the Horne's for dinner with Julie and Vince (my cousins). Then they came back Sunday morning and picked up RaeAnn and took her home with them, They had a great trip and made it home safely. We miss having her hear with us but life needs to go on. She is back to school and happy she will be in time to take her midterms, and won't have to do any makeups.

Roy and I both continued to have pain and small issues throughout out this past weak. Roy's Billyruben numbers are starting to drop but now his liver imzines are slightly higher than they should be so they would rather keep him around here another week. So he will be staying with us.

I am still leaking large amounts of fluid. This is damp and warm and can provide a path for infection. Well I am falling asleep again trying to finish so I will try and send more latter.

Hope for a good weekend.
Jeff

Heading Home!

I hope I didn't get you too excited. I(RaeAnn) am the one going home not Roy or Dad. We have some neighbors who stopped in Mesa yeasterday to go to the temple. The offered to take me back with them to Idaho Falls. So I am leaving my family here to go back to Idaho and my Family and school there. It is kind of a bitter sweet. I am sad about leaving my mom, dad, Roy, and the Hornes.

We just took this photo Sunday morning so you can see how we all look. as we are starting to go back to our lives. We would not have made it this fare so well with out everyone playing there part to the fuliest.

Like a fountain unto all lands

2/26/10



I was planning on a short and boring update for you all but we have had a change in that. This morning I woke up and did not have to go into the hospital, but Roy had Blood tests scheduled. So Beth took him to the hospital. I was retaining a great deal of fluids and was concerned about it so I did call the Clinic and they gave her some Lasixs to give to me.



Roy had a good report from the doctor, all though Roy thinks he should be doing better than he is.



When Roy and Beth got back to the Horne's they laid down for a rest. I stood up and walked into the Kitchen and started to leak. Although leak may not be the right word. It was more like a guesser. I was gushing assiceeds fluid from my incision line. by the time I could get Beth into the Kitchen to help me I had dropped about a Gallon of fluid on the floor. Beth was bending over trying to help me get the drenched socks off my feet. I bent over slightly and ended squirting her. I felt like a Greek statue water fountain. After calling the Mayo Clinic and being assured that although it is not normal for this to happen it is not something to be concerned about. "the leakage is expected but the quantity not quite." As long as I keep my incision clean and the leakage stays clean then we don't need to worry. But it certainly made the day quite exciting. I am sure my wife would rather change a wet baby than her wet husband. The incident dashed my hopes of an uneventful day.

Jeff

Hospital are for sick people.

Good Morning!!!!! It is a great day hear in Phoenix. I was released from the Hospital yesterday afternoon at about 1630 hours. The Doctors were all worried about me being in the hospital around all the sick people. They said Hospitals are for sick people and I am not longer sick. They have given me a tentative schedule and I will be having to be back at the Mayo Clinic for Blood work and other ongoing assessments on , most Tuesday's and Thursdays with a few other days thrown in at least until March 24th.

Roy got released also about noon. so we are both staying in Mesa at 3658 E Palm Street, Mesa AZ. 85215. Cell phone numbers all still good.

Will update more latter

Jeff

words from Jeff

I thought ya'll would all like to see the whites of Jeffs eyes. love Beth

I thought I would take a few minutues and make some personal coments. First let me once again thank everyone out there that has given a prayer, a positive thought or a well wish towards us. I know at times this journy never seemed to be coming to an end. As I lay here in this hospital bed looking back, the journey seems unreal. Thanks for hanging with me through this, I couad not have made it with out you all,

I do feel a lot of pain from the surgery but I feel so much better from the new liver it is GREAT.

What a great gift for Roy to give me. It has not been easy sailing for him today was a rough day for him. I had a pretty great day got up and walked got most of the lines out of my body and have been feeling pretty good. I stilll have a way to go but each day should get easier. The people here at the Mayo Clinic are the Best. They treat you so good and are always looking for the little things that make the diffrence.

I look forward to getting home and back into life. I have so much I owe everyone especialy my Heavenly Father.

We have not seen my old liver yet but are told we can see it tuesday at pathoilgy. Also the Surgery team took some pictures for us of Roy and I going through the surgery we will get to see them Monday. I hope these blogs gave been helpfull for you all

Thanks again love Jeff Beth,Roy, AND RaeAnn

Post-OP Day Two; Up and At'm!

Well today a lot has been accomplished. Dad has walked several times. He was able to get two drains and several IV's and tubes removed. Around 5 o'clock he was moved out of the Intermediate wing into the C wing. He is now just three doors down from Roy.

Roy has had a rough day. They took him off his Morphine this morning, so his pain has been a little more apparent. He has had an upset stomach and discomfort in his abdomen. The doctors say it will get better as soon as his bowls "wake up" (sorry I am sure that is more than you wanted to know.)

It will be interesting to see who is doing the best tomorrow.

Love Y'all,
RaeAnn

Post-OP Day One

Dad wanted me to label this picture, "Jeff and his Hero." but I think it should be "A Hero's Hero"

Roy has been doing exceptionally well. The Doctors and nurses say he is a text book case. Everything about him is Perfect, including hit temp of 98.6. He was up and walking around by 11:00 and had all but the one major IV removed by 3:00. The nurses are impressed with how polite he is and are constantly getting onto him for apologizing about everything. I guess some people never change - not that I would want him to.

Dad has been having a hard time keeping up with Roy but is still making progress. He was moved out of the ICU and up to the third floor. He is just about 50yds from Roys room.

Roy has made two trips to see Dad on the third floor so far tonight and would like to make more if Dad weren't so tired.

All seems to be going good here, and the kids at home seem to be doing pretty good as well. Ashlee is pretty bummed because the girls basketball team lost the championship game tonight in Boise. The band and cheerleaders had gone up there to cheer them on. She will be getting back to IF early tomorrow morning.

Finally I would like to thank all those who have sent us messages of encouragement. And the Office for the flowers. Sadly we were informed, Flowers were not allowed in the hospital due to infections and allergies. We are grateful for the thought anyway.

Thank you

RaeAnn

Address

We have had several people ask for the address for both Roy and My Dad here at the Mayo Clinic.

5777 East Mayo Boulevard
Phoenix, Arizona 85054

Roy is in room 310 West


As Hospital Policy and in consideration to the patients we must ask that you do not send Latex Balloons or Potted plants.

He is out!!

Dad is out of Surgery and in recovery for about an hour until they take him to the ICU. Dr. Mulligan says he did great and that it took them 5 1/2 hrs to get the sick liver out. All seems to be doing good for now.

Thank you to everyone who fasted, prayed, and had us their thoughts throughout this day and this whole ordeal. We know that things would not have gone as smoothly as it did if it weren't for the love of our family, friends and our Heavenly Father.

Almoste There...

Well I am finally in Roy's room with him. He is hooked up to three different machines (that I can tell) and has about a half a dozen tubes coming from him. He is pretty out of it but seems to be doing good. He doesn't like to talk when he wakes up but likes to hear us talk to him.

Dad is still in Surgery as far as I am aware. The Nurse informed us about 6:30 that he took to Roy's liver exceptionally well, and that it started "pinking up" almost instantly (that is good.) The last we heard he was having his hernias repaired and then he would be closed up and shipped off to ICU for recovery. Mom is in the waiting room downstairs waiting for Dr. Mulligan to come and tell her all is well. As soon as he does, I will update again and we will go from there.

One Down and One to Go!

Roy is out of Surgery and Dr. Mulligan said he did great. They are bandaging him up and getting him settled before we are allowed to see him. Dad is in the OR and they will start operating soon.

One down and one to go.

The Race Begins

Well the race has begun. Roy left for surgery about 8:00 and so now we are just hanging out in Dad's room waiting for his turn. The Doctors think Roy's surgery will take about 5 hrs including the prepping. After they start harvesting Roy's liver, Dad will be taken back and prepped for his surgery which will take anywhere from 6-15 hrs. his is going to be a little trickier because they not only have to remove his old liver but then form a new bile duct to attach his new liver to.
The Doctors seemed very upbeat and positive, Roy has been having fun making puns with the Doctor's names such as " Dr. Mulligan, There are no mulligans with this." (A Mulligan is a do over in golf.) and "Dr. Grim has a rather Grim personality." Dr. Grim is the anaesthesiologist and so Roy doesn't consider her a very close friend but has had fun teasing her all the same.
Mom and I are just hanging out with Dad in his room. It is not very exciting but we have been busy updating everyone. It is turning out to be a LONG Day (Roy would be proud of me for that pun.) Stay tuned for more exciting news from the Long Family Saga.

Happy Valentines Day We Are On Our Way

This is Ashlee Jeff's daughter this picture was taken this morning just before we went our seperate ways. Mom and RaeAnn are on their way to Phoenix they are driving as far as Kanab, Utah tonight. My Dad is staying at Paul and Tina's house tonight and their son Jared will drive him to the airport on Monday where he will fly to Phoenix. Us kids Aaron, Timothy, and I will be staying at neighbors house for the next six weeks if everything goes well. We are grateful to our family, friends, and neighbors for the prayers and the love and support.
Thank you so much,
The Jeff Long Family
Happy Valentines Day

Valentines Update.

The Trip has began. We had to be in SLC on Friday 02/12/10 to see the Intermountain Transplant Clinic for our three month check in. So we loaded up the van and Beth and I and the 3 kids at home Ashlee, Aaron and Timothy headed for SLC. We are staying at Beth's brothers house in Tremonton. We are trying to make a fun weekend for the kids before we leave them for 6-8 weeks. Sunday the kids head back to IF with some GREAT ward members and Beth and RaeAnn start driving for Phoenix. I am going to fly from SLC to Phoenix on Monday (02/15/10). Mayo Clinic wants us there Tuesday morning (02/16/10) for pre-op. tests and classes on what to expect and how to care for me after transplant. That is Tuesday and Wednesday. Then Friday morning (02/19/10) Roy (my oldest son) has to be at the Mayo at 0530 am for surgery. I have yet to be told when to be there.

The Drs. in SLC wish me luck and see no reason for it not to go ahead. That in mind a lot can happen in a week. So stay tuned. We will try and keep the Blog and email up dated.

I know this sounds old but it is so very true. Thank You so much for all your prayers and support. Our lifes have been touched so many ways!!! I would love to name everybody that has reached out and help us but there are way to many and I know I would miss several.

Please know that I know that I am a child of God. A God that knows me personally and watches out for me and blesses me. He sent his Son Jesus Christ to this earth to be a Redeemer for me and to save us. He supports me through my trails and bares my burdens for me when I grow to weary.
May the Love of God fill you life

Thanks Jeff

FYI: Third Time is NOT the Charm

So I discovered the third time is NOT the charm. Mom and Dad flew to SLC early Wednesday morning only to spend all day fasting and then get turned away from another liver due to a rash-fungus-thing on Dad's stomach. The rash was right where they were going to be making the incision so the doctor didn't feel safe proceeding. So instead of receiving a new liver Dad was given a prescription for an anti-fungal cream and sent home. The doctor said that it should go away withing two weeks but that he would be willing to do the transplant in one week if he got the opportunity.

Roy finished his testing in Phoenix on Friday and has been working with the Elders there since then. He should find out on Wednesday if he is a good donor. If he is then we could be going to Phoenix as soon as the 15th. Keep your fingers crossed.

Thank you again for all the support. Sorry about letting you down again we don't mean to cause this false excitement.

RaeAnn

Third Times the Charm?

I guess we will be learning today if the saying "the third time is the charm" is really true. Mom and Dad got a call from the Transplant team in SLC called them last night to tell them they needed to be at the hospital by 9:00 for a possible transplant. So they got two last minute flights to SLC and are now undergoing testing and other things to prepare for the transplant. We will have to see how things go. I will try to update this as soon as I learn more.

Thanks for your Love, Support and Prayers

RaeAnn

Record Snow fall

Beth and I made our way to Kanab as planned on Tuesday. We got a late start and did not get to Kanab till 2330 hours. We had decent roads until we turned south of I-70 on to US 89 then the further we went the worse the roads got. We finally made it to Kanab with no incident but my poor wife was very worn out.

We did not do much Wed. We got to visit with Liz Kolle and then we went over to visit with Que and Carla Johnson. We were only going to stay a for a little while we got there at 10 after six and didn't leave till after midnight. Time just seamed to go so fast. They are such great support to us sharing their transplant experience with us. It sure makes a big difference and gives us so much hope.

On Thursday we headed to phoenix we had bad weather the whole way and lots of snow on the roads. When we got to Flagstaff we found all the fast food restaurants closed due to the storm. Luckily we found a gas station open. we st oped to Potty. The attended told us that the Road was closed to Phoenix because of the snow. We decided to go as far as we could. That way we would know as soon as they opened up the road. We got through Flagstaff and on to I-17 then found the signs saying Road Closed. We took the off ramp and at the top were some ADOT workers we stopped and asked if they had any idea on when the road would reopen and they said they just opened it for a few hours to go ahead. We continued on the road.

As we got lower in elevation we left snow and got into record rainfall the dry washes were all raging there was some flooding over the road. We just pushed on. Then once in Phoenix the highway was closed down due to a giant tent that had been blown done by the wind and blew across the highway. We took a detour around the closure and made it to the Horn's house at 2030 hours. I can tell you looking back on the trip that we felt protected and blessed the whole way.

Friday we went to our appointment with the Mayo Clinic and things went well. They want me to see a Dermatologist for the rash on my belly and have set that up for Wed. since I will be in town.

Sat. was a recuperation day. Sun. We went to church with the Horn's then had a great dinner. At 2000 hours we meet Roy and the Scottsdale Missionaries at the Mayo Clinic and and picked him up. He will be with us through the week of testing he will have to go through.

That is the latest from me. I am doing fairly good. I truly continue to See the Lords hands in blessing me and my family throughout this experience. I am so thank full to the great people in IF that are helping with are children. There are so many to thank. We are hanging in there pretty well and continue to give prayers of thanks to our Lord. May God pour out his blessings on you also.

Jeff

sddd

Thought I would update my Face book Friends on the latest. I have to be in Phoenix for testing on Jan 22nd. So Beth and I are leaving here tuesday morning and heading to Kanab take a day breack then on Thursday head down to Phoenix for testing on the 22nd.
Roy has made it through the first two steps to beining a living dooner for me and he has to be in Phoenix on Monday the 25 for 5 days of testing. This should tell us if he can be a dooner for me. We are going to stay their with him through the week.
He will be flying in on the 23rd at 0900 and will be picked up at the Airport by Missionaries from Mesa, He will serve saturday and sunday with them then sunday evening he will be turned over to us. after all the testing we are planning on flying Roy back Home to Seatle untill the time for surgery comes. then he will be flwon done again and released as a missionary for the surgery and recovery time then when he is able to breform all missionari tasks he will be re-setupart by our Stake President and he will return to seatel on his mission.

Hope this help some of you fill a part and can fill like you know some of whaat is gong on