Home Sweet Home

We're home! Joe got out of the hospital on Thursday, 8 days after transplant. He continues to heal at home and we will return to UCLA twice a week for doctors to monitor his medications & progress. He can get around on his own and they encourage him to walk as much as he feels like but no lifting more than 15 pounds. No driving or going to work for at least 4-6 weeks. He's actually adapting quite well to this slower routine... I was a little worried as those who know him know he does not sit still for very long. He's loving all of the calls, cards & short visits from friends & family which make him feel like he's getting back into his life again. Being gone in Florida for 5 months was tough and he is enjoying being at home and reconnecting. Thanks again to all of our friends & family who helped keep our family going throughout all of this. To our donor family we look forward to one day meeting you and sharing our love & gratitude to you for your special gift.

Love, Julie

Recovery Continues

Joe's recovery continues to be moving along well. Today they took out his nose tube and he is off all of his pain meds! He is up and walking (dragging his IV pole) and got to brush his teeth in the bathroom sink. Woo Hoo... the little things that make us happy. We got to sleep from 11-4 last night without being woken up by nurses checking IVs, monitors etc. It felt great for us both. My parents brought the kids to spend time today which we loved. Joe's parents came also which was special since they had driven the last 3 days straight to get home from their vacation to see Joe. Joe missed attending the alumni event for his Cal State Fulleton soccer team on Saturday night but received a gift from them which was a #9 (his college #) jersey from the alumni game signed by all his former teammates who were there. Friendships that have lasted 25 years... amazing! Forever thankful for the blessings that this event have brought to us.

Out of the ICU

Joe took another step in his recovery and was moved out of the ICU & into a regular room. They took out his catheter & the tube in his neck. He continues to have an IV for fluids and the drain that goes thru his nose. Joe's liver disease(PSC) is actually a disease of the bile ducts which destroys them and causes damage to the liver as well. During surgery they had to remove his old liver & the bile ducts with the hope that the disease will not come back. In doing so they had to attach his new liver to a piece of his intestine & then attach it to the stomach. This requires a little extra care in recovery and therefore the need to keep the drain that empties his stomach and allows the intestines to heal completely before he can eat & drink again. He's moving around a little more & doing his breathing exercises to keep his lungs clear. Being a transplant recipient means that they do not allow any live plants/flowers on this floor of the hospital due to the risk of infection. Cards & phone calls make him the happiest. Thanks to Janelle, neice Megan & our Nicholas St. neighborhood for the signs & posters that decorate his room. We continue to send thanks & prayers to the donor family, Toni, Dana & all of our family & friends that have made this miracle happen.

ICU Day 2

Joe had a good night. We all got some sleep :) The doctor was here this morning and said Joe continues to do very well. They took out two of his incision drains and all of the dressing that covered his incision. Man, now that's a scar. Today was busy... he got to sit up in a recliner chair for a couple of hours and a sponge bath! He continues to sleep much of the time as his body heals from his extensive surgery. It looks like his stay in the ICU will last a couple more days because there are no beds available in the regular hospital. We have been lucky to have Joe's sister Joanie with us since surgery and boy is it nice to have a family RN by your side every step of the way! She will leave tomorrow am to go back to Florida:( We look forward to Grandpa & Baboo (Joe's mom & dad) arriving home on Saturday so that we can see them. They were on a 2 week road trip to Indiana & Nebraska to visit Joe's sister Lela when all of this began. This was not easy for Baboo to miss being a retired RN herself. We continue to be thankful of all of the blessings this event has brought us and are thankful to the army of family & friends who continue to support us with all of their kindness. We love you all!!!

ICU

Joe is in the ICU at UCLA and they just took out his breathing tube...YEA! He is making great progress and feeling much more comfortable w/o the tube, and happy to be talking again. With the progress he is making they hope he can leave the ICU tomorrow and go to a regular room. He will stay in the hospital about a week. We are thrilled with his care at UCLA and are so pleased with all of the staff. Thanks to all for your support & good wishes!

Surgeon update #2

The surgeon came out at midnight to let us know that they are closing him up. The surgeon said his old liver was in horrible shape and he was happy Joe got transplanted now!! Surgery went extremely well & new liver is functioning beautifully. He should be in recovery in about 1 hour and then to ICU for 24-48 hours. We can see him in ICU. We are so thankful and happy all went well. Love to all!!

Miracle - Surgeon update #1

Just got the call from the O.R. at 10 pm pacific time. The old liver is out, the new one is in and everything is going well. 3-4 more hours to go!!!

A Miracle!

We truly are experiencing a miracle! On Monday night we received a call from the mother of a friend of our son. She had a friend who's pastor's wife had just passed away from a brain aneurysm and the family was donating her organs for transplant. The family was asking if anyone knew of someone in need of an organ transplant and our son's friend's mother gave them Joe's name. This was all taking place 15 minutes from our house at the hospital where both our children were born! Tuesday was a whirlwind of phone calls to our insurance, Mayo Florida & UCLA where Joe had been listed before we went to Florida. The family met with the organ donation team on Tuesday and we learned that afternoon that the pastor's wife's liver was a match to Joe. We were overwhelmed with gratitude at the gift this family was giving in their time of sorrow and we will forever be grateful to the Scroggins family. It was decided that UCLA should do the transplant since they were the closest so Joe & I arrived Tuesday night so Joe could go through testing & evals to get him back on the list at UCLA. This morning he was cleared by the transplant team & relisted...the waiting began. The liver arrived at UCLA at 5pm and after going thru further testing it was deemed suitable for transplant. Joe was wheeled into the O.R. at 6:30 and I am waiting to hear that the surgery has begun. Thank you also to our own angel on earth - Toni Plott who got this whole miracle started. We are so blessed to have friends like you. Please keep our family and the Scroggins family and all of the families that her organ donation is touching in your prayers...Miracles Can and Really Do Happen!!!

HEADED FOR HOME!!!?

Unfortunately the MELD score never returned to the mid twenties after the hospital stay for the bile duct infection. With a MELD of 17/18 the chances of transplant at this time are slim and none. So, no sense sitting around here wasting time and money if nothing is going to happen soon. Will the MELD go back up? When will this happen? The first question is easy. Yes, the MELD will go back up. I am no better health wise than when we arrived here in April. I do feel fine but the bile ducts of the liver are continuing to deteriorate. With the transplant system in place now though, all that matters is where that MELD score is today. When this will happen is the unknown. Two weeks, two months, one year? Only time will tell. When the time comes, we will return to Florida and give it another shot.

We are very exited to be going home. Being able to see everyone, the kids' fall sports seasons, the upcoming holidays, and getting back to work (I can't believe I am looking forward to that, but I am) will be great. Going home with mission accomplished would have been ideal but that will come soon enough. Some great news from this morning to add. A couple from Bakersfield with whom we have become friends while here came downstairs to the breakfast room of the hotel to tell us that they just received their call for transplant and were on their way to the hospital to begin getting ready for surgery. He was very sick and really needed his new liver soon. Please keep them in your prayers.

Hope to see everyone while I am home. Julie will pick my mom and me up Thursday afternoon at Ontario Airport. If you are in the neighborhood please stop to hello so that I can personally thank you for all of your prayers and support while I was gone.

See you soon at the soocer fields and around town,

Joe

One More Time

Wednesday morning they found that the stent had moved. It dropped out of the spot they had placed it and it had to be put back. Wednesday afternoon it's back to the ERCP room. They removed the stent and replaced it with a larger one to be sure there would be no more slip sliding away this time. This meant one more night in room 329.

Thursday morning meant the return to eating. After no food since Sunday evening even hospital food tasted great. I was released at 1 pm and returned to the hotel for more solid food. All is well again and now we can hurry up and wait some more.

Talk to you all soon,

Joe

The dreaded......Infection

Yes, it finally happened. I was hit by a side effect of a failing liver. The bile duct that my disease is affecting became to constricted to let bile flow through correctly. It became clogged and caused an infection causing me to become sick with headache, body ache, flu like symptoms. I gave blood Friday morning and had MELD score of 34, which clearly showed there was a liver problem and got me admitted to the hospital Friday afternoon.

Much blood was drawn for testing and cultures. The headaches would not go away with any of the pain medications they were trying so CT Scans of the head were done. They were clear and they tried to decide what to do next. They pumped in the antibiotics hoping that taking care of the infection would relieve the headache and fever.

Sunday was much of the same. They did brain and abdomen MRI's to get more detailed pictures. With the brain part of it still clear they figured the headaches would go away when they took care of the liver.

Monday's schedule included a Spinal Tap, just to be sure there was no infection in the spinal fluid, an ERCP, which is a scope down the throat with a camera and has room in the tube to send various roto rooter tools to clean the liver's main bile duct and insert a stint to hold the duct open which they did. Everything went well. Finished around 6 pm so another night in the hospital while they got another look at all the results.

Tuesday morning they told me about some possible problems in the stomach that they got a quick look at during the ERCP. They were going to go back in with just a camera to have a look around. Taking care of the clogged bile duct did the trick. It started the liver functioning more correctly which relieved some building back pressure to the veins in my stomach. They were no longer bleeding.

A busy four or five days but, all is well. Back to waiting and hoping everything continues to go well. Thanks for all of your thoughts and prayers, Joe.

Nothing New

Unfortunately, no new news. All is well here. Julie and the kids are home, finishing summer and getting ready to start school. My mom is here and helping me wait. Julie will return for a week or so whenever surgery does happen. My MELD score is 24, which is where it was at for call number two. It was 25 for the other two calls. Work is busy which keeps me busy during the day. Close weekend outings or time with the many friends we have made keep the weeks rolling along. We can't wait to get home to see everyone. We miss you all a lot. Thank you for all of your thoughts and prayers. Joe

Strike Three

It's a no go! Strike three on the liver today!!! We're hoping to score with #4!!!! Thank you all for your prayers & support - it really helps!!! Joe's mom & sister drove up from Tampa this morning so we're enjoying spending time with them. Love to you all.:)

Third time's a charm????

Well, here we go again. Got a call at 5:30 am eastern to come in for transplant. Arrived at check-in at 7 am and began surgery prep. It is now 9:20 am and we are waiting to here if the surgery is a go or not. Keep your fingers crossed. Julie will update this blog post in a couple of hours. Thanks for the prayers, Joe.

Strike Two

Surgery cancelled. The liver was no good and never even made it on to the helicopter. This process is sometimes frustrating and yet we feel we are so close. Thank you for your continued prayers and support - we really appreciate you all so much. We know when our time comes it will be that much sweeter.


Love,
Joe, Julie, Jimmy & Janelle

Here we go - again!

We are at the hospital and Joe is going through pre-op now. We are waiting for the liver to arrive by helicopter and go through further testing. The surgery is tentatively set to start at 12:30 eastern time. We are praying that this one is it!! We request prayers for the donor family for it is their generosity in their time of grief that gives the gift of life to others. We are forever thankful to them.

We love and thank you all for your continued support of our entire family!

Love,
Joe, Julie, Jimmy & Janelle

Jimmy Is Here!

Jimmy made it here Friday and hopefully brought some So. Cal. good luck with him. We had a great Father's Day weekend with the whole family together. Hopefully the new week will bring some new news. Thanks to all, Joe, Julie, Jimmy, and Janelle.

False Alarm

6 am Saturday morning. Sound asleep. Phone rings. Its a 904 area code number. It must be the hospital. "Good morning Mr. Baeskens. How are you feeling this morning?" The voice on the other end offers me a liver. "Can you be here at 8 am? Good, we will see you then." Well, that's basically how it went. Julie and I arrived at the ER at 8 am and I went through about three hours of surgery prep before we were given the unfortunate news about an hour before the noon scheduled surgery. The liver that looked good at the donor site was found to be not suitable for transplant after tissue tests at Mayo. We were fully prepared for that possibility and packed up and went to watch the U.S. play England in their world cup soccer game. At least we know where I am on the list. Here's hoping and praying that we get another call in the next week or so. Thanks for all of your support and prayers. Joe, Julie, Janelle, and Jimmy.

New Meld Score

This morning Joe gave blood for his new monthly MELD score. The new number is 25 which is great for moving up the list, possibly into the top five, and closer to transplant. With a 25 comes weekly blood tests instead of monthly. Hopefully next Wednesday we can hold that number, or better yet, get transplanted by then. As of now, all is good health wise. Joe is busy with work and feeling fine. Our niece Beth is here for almost a week to hang out with Janelle. Janelle is so exited to have her here. Lots of beach time and other outings planned. Thank you all for your continuous well wishes and prayers. We think of everyone so much and we can't wait to get home to see you all. We are counting the days until Friday the 18th when Jimmy arrives and our family will be complete for a couple of weeks. Love, Joe, Julie, and Janelle.

Weekend with the Richardsons

On Saturday Janelle & I ran a 5k on the sand to support the Never Quit Foundation in honor of Joe. (Notice our bibs) The foundation works to support good health & fitness in the Jacksonville area. We spent a great weekend with Joe's sister Gail, hubby Jeff, & Ian from Dallas. We even got to take Ian on his very first trip to the beach. Janelle loved introducing him to the ocean! Thanks guys we had a great time!!

Views from home

Jimmy celebrated his 15th birthday at my sisters house with his extended family. Thank you so much to Jenny & family for making his day so special & full of family & friends. The second pic from home is our dog Molly who is being spoiled at the Ceccarelli's home and knows exactly which team to root for! It's great to see pictures from home!!

Memorial Day Weekend

Well we went to my mom's friend Amy's this weekend to see her and her family. We went to her husband Tri's parents condo in New Smyrna Beach about 1 1/2 hours away. It was fun. We got there on Saturday about 12 and went down to the beach. Tri showed me how to surf on a longboard and that was fun. I got a couple of rides in before we packed up and went to the pool. We swam for awhile until we saw big thunder heads in the sky and went back to the condo to shower and go to dinner. We went to a seafood restaurant and ate some yummy fish. Then we came home and watched a movie. Then we all got to go to bed. When we woke up the next day,we all got ready to go to the beach. There we played in the water a little bit and then played on the sand some more. Then we headed up toward the pool and went swimming. Then we went back up to the condo, showered, and the moms and dads went to dinner. JB and I stayed home and built a fort for the big nerf gun battle. When the parents came home we had a nerf gun war. Kids vs. dads. They beat us by a lot but it was still fun. Then we watched some more of the movie and then went to bed. The next day we got up, got our bathing suits on and went to the inner coastal where we got on their boat and went wakeboarding. I also got up on the knee board. It was very fun. We saw a lot of dolphins and even some manatees. Those were neat. Then we went to lunch, went back to the condo to get our bags, and drove home. Overall, we had a very fun weekend.

After a very busy weekend in Savannah,Georgia, this week has been pretty quiet. Besides our Tuesday and Thursday trips to the beach for lunch we were laying low. On Friday we went to see Shrek Forever After which I thought was one of the best movies I have ever seen. We had a fun night together. Unlike the movie theaters in California, big and packed with people, this theater was roomy, but not filled with people. Overall we had a fun week and are looking forward to spending the long weekend with one of my mom's friends and her family near Daytona Beach.

Our home away from home

These pictures are of the Mayo grounds, hospital and our hotel.

Family Visit

Great weekend with Dave, Joan, Carl & Nick! We went to the beach, the boys got to surf, had a BBQ steak dinner on the patio at our hotel and just enjoyed being with family. Already looking forward to your visit next month.:) Love you guys!

Hurdle number one - Cleared

Hello All,

Testing is finished and as of today we are officially on the Mayo transplant list. Now, the waiting begins. But, every day is one day closer to transplant! Looking forward to a fun weekend with my sister, brother in law, and two nephews who will make the four hour drive from St. Petersburg Friday to spend two nights with us. Thanks for all the notes and prayers. We love hearing from everyone.

Joe, Julie, and Janelle

TGFS!

Thank God For SKYPE! Skype is Janelle's new best friend. She is spending lots of time on Skpe with her little cousins who are home during the day and her friends & family at home so she feels very connected. We get to see and talk to Jimmy so we don't miss him so much and we even got to see cousin Megan with Tyler off to the prom. We're still homesick but it definitely helps. :) We shopped at a fabulous mall (like Victoria Gardens at home) today. Hmm, I think this place may be OK!! We are also looking forward to the weekend when Joe's sister Joanie and her family are coming to visit us from their home in St. Petersburg, FL. Janelle is excited to hang out with her cousins - I think she is a little tired of adults. Our evening walks around the hospital grounds, which are set in the middle of lush, woodlands, are introducing us to all of the animals in the area. We've seen raccoons, opossum, frogs, ducks and geese but Janelle's still watching for a gator to emerge from the 10 lakes that we pass.

Slower days have begun

We saw the geese families today along with a turtle. He was swimming in the nearby pond and decided to come over and eat the bread that I was feeding the fish with. I also got the mother and father birds in the nest on top one of the hospital buildings. My dad and I researched the birds and found out that they are called Osprey's.Then the oddest thing came out of the bushes. It was a cat! I wondered if it was a stray but turned back to see what it looked like and noticed that it had disappeared into the trees.We will have to see if we can see it tomorrow.
Later in the evening we went to the fountain in front of the hospital to watch a couple from our hotel renew their marriage vows.She was very sick. Then we went into the hotel dining room for cake and punch.The couple had invited everyone in the hotel to come to the ceremony.It was beautiful and we all had a lovely time. Love, Janelle

The Testing is Done!

The second week of testing and meetings is finished. Each individual who met with Joe and I, Transplant Surgeon, Cardiologist, Pulmonary Specialist, etc. all said everything looked fine. The final meeting on Friday was with Joe's personal doctor. He said that he saw no potential problems or reasons why the approval at Wednesdays Transplant Board meeting shouldn't go through. If that holds true Joe should be on the transplant list by Thursday. Keep your fingers crossed. Best case senario for wait time would be 30 days, but it could be longer. Joe's MELD score according to the first blood draw after we arrived was 24, up from 22 before we left. His new MELD score as of this week was back to 22. Back to 24 would be great.

Hi everyone. Joe here. Mothers Day Weekend is here. We started off early Saturday Morning watching the sun rise over the Atlantic. Next was breakfast at a local eatery recommended by a lady who has been in Jacksonville beach for life. It was very good. From there it was off to Sawgrass to watch the The Players Championship golf event that was right here in town with some passes that we received from someone that we met who was not able to use them Saturday or Sunday. Watching those guys live was unbelievable. We will see what Sunday brings for a fun Mother's Day. Happy Mother's Day to you moms. Thanks for all the well wishes and prayers. Go time is one step closer and we need them all. Talk to you all soon. Joe, Julie, and Janelle.

Hi everyone Janelle here. My dad had 3 education classes today. My mom and I went to the beach today and touched the Atlantic ocean for the second time. We also had another rain storm at around dinnertime that lasted for a couple of hours on and off. We also went to the emergency room this evening because of the shingles that I have. We were there for a couple of hours but I think that it will be worth it, to get the medicine started tonight. As testing winds down for my dad he will be busier with work so my mom and I will hopefully get to spend more time playing at the beach. Talk to everyone soon, Janelle

St. Augustine Lighthouse

In St. Augustine we visited the lighthouse where Janelle & I climbed all 236 steps to the top and boy what a view! That is the Atlantic Ocean behind us and the wind was gusting at the top. Beautiful.

A New Week

Hi Everyone, Janelle here. We had a fun weekend after a busy week. Saturday was spent at the zoo in Jacksonville. It was small but had some great animals. Sunday morning we went to the University of North Florida to watch a kids triathlon. The age groups were from 5-10 years old and 11-15 years old. The youngest kids were the best to watch. Some of them even had training wheels for the 3 mile ride. Sunday afternoon we headed to the Town of St. Augustine, the oldest city in the U.S. It was part of my project on the State of Florida that I finished for school before I left. We came home on the coast and past Sawgrass, wear we hope to watch part of the PGA golf tournament next weekend. My dad has another busy week. Monday has meetings with a doctor who will talk about infectious diseases and another with one of the transplant surgeons who will talk about everything surgery related. Tuesday brings meetings with his RN who is the transplant coordinator and the transplant center pharmacist who will talk about all medications before and after transplant. Some of these my dad will have to take the rest of his life to prevent rejection. The last meeting is with the nutritionist who will talk about all the foods he can and cannot eat after transplant. I hope she doesn't rule out Fruit Loops, dad will be mad. Thursday is the only icky appointment this week. A camera down the throat to check for any internal bleeding. Friday he has his first blood test for a new MELD score (23 we hope) and a meeting with his personal doctor who will tell him what his recommendation to the transplant board will be the following Wednesday. Lot's going on but the week will go by fast and we will have fun next weekend again. Talk to you all soon, Joe, Julie, and Janelle.

Our address at Mayo

Hi all!

Here's our address at Mayo:

The Inn at Mayo Clinic
4420 Mary Brigh Dr.
Jacksonville, FL 32224

Just put our name on it and we will receive it. Joe's proding and poking doctor appointments are done - YEA! Now we just have appointments with doctors/nurses telling us what to expect before, during and after transplant which we already went through at UCLA so we know what to expect. When Joe's doctor asked how long he had been on the list at UCLA and Joe replied over a year the doctor kind of laughed and said, "Oh, thats an eternity here! We don't really ever have that." Our hopes for Joe to be headed home in 90 days are alive! Janelle is busy creating crafts and sending postcards to family & friends and trying not to miss her puppy too much. We got a picture today from Camp Brunner(as Joe's cousin Julie named it) where Sam is staying with her cousin Bailey (also a yellow lab). Bailey is teaching her all about playing in water and what it's like to live on an acre - we may be in trouble when we get home. We fell in love with a little beach town called Neptune Beach which is only about 10 minutes away so we've been exploring the shops and restaurants and gathering shells along the beach. Not Carlsbad but a pretty close second! As always your love, support & prayers keep us going and a special shout out to Nicholas St. for taking such great care of our boy! We will be with you in spirit tomorrow at Kelsi's sweet 16 party - I can almost taste Terry's margarita now!
Love you all,
Julie

General Info

I realized we needed to share some general info about our trip for friends. Joe, Janelle & I are staying here at Mayo at a hotel connected to the hospital. Jimmy stayed home w/ our awesome support system of neighbors & family to finish out his freshman year in high school and track season. He will arrive in Florida on 6/18. Joe is going through a battery of testing to make sure his body can handle the transplant and if all goes well we hope to get him on the transplant list by 5/13 and then it may take anywhere from 4 weeks to 3 months for his transplant to happen. Joe has already waited on the list at UCLA for over a year but the list is about 10 times as long as Mayo so his doctor sent us here. We have to stay within a 2 hour radius of the hospital to be ready at any time for the call that they have a liver for him. After transplant we'll have more freedom. If things go well the kids and I will fly home the beginning of July and Joe's mom will come out to stay with him til he can go home. Our insurance requires Joe to stay in Jacksonville for 50 days after his transplant so we kinda have to see how things go. Fortunately Joe has no other complications with his rare form of liver disease called PSC(primary sclerosing cholangitus) so he feels relatively well. We're looking forward to spending time with his sister/family coming up from
St. Petersburg and hoping to see my friend Amy in Lakeland. Hope this helps. Again we can't say enough how much we appreciate everyone's support for us on this adventure in life. We truly am thankful for you all. Love, Julie

Opening Day

Hi everyone, Janelle here. My mom and dad met the new doctor today. A young no nonsense, Irish fellow who says it like it is. No sugarcoating. That's how my dad likes it. The doctor did say that it looks like there will be no problems getting on Mayo's transplant list based on how things look. Let's hope he's right. Tomorrow starts about six very busy days of testing. We will keep you all up to date. Thanks for caring, Janelle

Our rides

Our family made it safely to Florida today. Even though our 2nd plane was a little bit late our rides went smoothly. We are going shopping for a video camera tomorrow so we will show you all parts of our trip when we get home. Love, Janelle

Mayo Clinic - Jacksonville HERE WE COME!!!

The planning and preparing is done and our plane leaves tomorrow morning. A big thank you to all who are helping to make this trip possible - an army of family, friends, neighbors and co-workers - we could not do it without you!!!! Here's hoping we get Joe back in 90 days.

It's Time!!

Since my MELD score has gone up to 21, my doctor has decided to send me to the Mayo Clinic in Jacksonville, Florida on April 27, 2010 to begin the testing process for a new liver. http://www.mayoclinic.org/liver-transplant/ It is my intention to keep all of you up-to-date with this blog by posting regularly the results of my tests, appointments, and daily happenings. So...onward!! Charlie Brown says, "In the book of life, the answers aren't in the back." Perhaps not a great philosopher, he was a boy with endless determination and hope. So with great determination, I take on this detour in life. Thanks to everyone for your support, prayers, and good thoughts. I will need even more of all of these in the coming months.