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