June 24 updates

Despite the 110+ heat, it's been a good 2 days. Dan is feeling pretty good, he feels no pain except for nightly leg cramps, and he's feeling happy. It's nice to be back together again after so long. He has labs twice a week still, his MELD is still 34 so transplant could be any time. Dan even started packing a hospital tote bag so when the hospital calls, he'll be ready. Praise God, no infections, no blood clot in the shoulder, and his leg swelling is better, so we plan to start walking a little each day inside the nearby mall (too hot outside) to keep up his strength for recovery after surgery. We also started reading scripture outloud to each other, my good friend Laura is praying Psalm 20 for us, so we've started reading and discussing this one. Dan's folks are looking forward to a trip on Friday for a family reunion in Minnesota, they'll be gone for a little over a week. Amy, Adam and Swen are coming up on July 1st for a few hours before they take off to Texas for a few days to visit Adam's brother and sister-in-law. July 1 is Swen's first birthday, can't wait to hug him. Stay tuned for more updates and we really feel your prayers.



Aloha from Phoenix,

Debbie and Dan

June 20th Updates

Dan had another set of labs done today, along with the ultrasound of his shoulder for that bloodclot, and doctor visits. Praise God, the ultrasound showed no sign of the bloodclot, so they are reducing the amount of blood thinner medication. His MELD jumped from 22 to 34, possibly from the blood thinner, so he is officially #1 on the list. The doctors sounded hopeful that a liver might become available even this weekend. 34 is a very high MELD score, which is good and bad, good because he is now transplantable and very likely to get an organ soon, bad because it means he is getting very sick. The strange behavior and personality changes continue, and I may go back to Phoenix sooner than I thought. Feel free to call me should you receive any interesting calls or emails. Please continue to pray for that gift of a liver, for the donor who will give his/her life and their family, and for Dan's wonderfully patient parents and sisters and their delightful gift of finding the humor in all of this.

Hoping to soar,
Debbie

The rest of the story...

Sorry no updates for a while. After Dan came home from the hospital on June 4, he did well for about a day then we saw some odd behavior, so he was re-admitted to the hospital on Saturday June 7 for observation and more tests. By Sunday, June 8 (our 30th anniversary), the doctors determined Dan is in a new stage of encephalopathy they call hyper delusional and the only "cure" is a liver transplant. So he was released from the hospital that evening, and we enjoyed a waffle bowl sundae from Dairy Queen for our anniversary. The odd behavior continues and with Dan's wonderful parents looking after him, along with Amy and Swen, and Roxanne visiting this week, I returned to Hawaii yesterday (Wed. June 11). We continue to pray and be hopeful of that gift of a liver transplant.

Aloha,
Debbie and Dan

Dan's out of the hospital!

Yay, Dan came home from the hospital this afternoon! Boy is he excited. These last 8 days have been the worst, and yet the best, days of our lives. When he checked in to the hospital, he was very close to coma, maybe death. In the last 8 days, Dan has had literally every part of his body either poked, scoped, examined, scanned, ultrasounded, you name it. One of his doctors called him their dart board, after being stuck so many times. We've lost count as to how many different doctors, specialists, surgeons, assistants, physical therapists and nurses treated him - we stopped counting after 30. And every last one of them were so kind, compassionate, brilliant, informative, and a few were down right hilarious. One was named Amy, her mom is named Debbie, and her former boyfriend was named Adam -- now that's just plain eerie.

Maybe the most remarkable thing happened during a particularly difficult time, I forget which day it was. As He would say it, Dan had a time of renewal. I'm sure he'll be blogging about this soon, but Dan has found such strength in submission - to God and to his caregivers. I wish you could see his countenance, he can't stop smiling or humming.

There are a few more prayer requests to share:
* Dan is on blood thinner for a short time now to dissolve the blood clot that formed in his shoulder from the pic line. We pray that it will completely dissolve prior to transplant, as it would be a showstopper for surgery.
* Leg swelling has returned, and a few blisters have reappeared and broke open this evening. We pray for this to stop and the swelling to go down like it did before.
* And of course, we pray if it's God's timing, that He will provide a liver during this window which is open through Friday June 6. If not, we continue to wait hoping not too much longer.

Soaring with praise,
Debbie and Dan

Update as of Sunday June 1, 3:30pm AZ (12:30pm Hawaii time)

Praise the Lord, Dan is so much better today. Labs show no infections of any kind, blood sugar is almost normal, nothing abnormal from the urology reports or the cardiologist. The physical therapists came by today to get him walking several times a day, sitting up in a chair, and provided some leg and feet exercises to help with the swelling. He will be discharged tomorrow (Monday June 2) unless an organ becomes available and he gets his transplant! The "wonder window" is open through Friday, June 6 and the doctors are not using the word "if" anymore but "when" he gets transplanted. Dan is #1 not only for the hospital and state of Arizona, but the region (Arizona and 5 other southwest states) during this "wonder window" time. So, I'm sticking around here for a few more days, but if we get the miracle gift of transplant, I'll be here a few weeks longer.

Remember how I described Dan's large private hospital room? He is now in a different "pod" of rooms on the same floor, a less urgent care side of the floor, and it's an even bigger private room, complete with 3 chairs, table, love seat, small fridge, and of course cable tv with video on demand! And Dan's favorite part today...lunch was steak and baked potato! We enjoyed watching Evan Almighty on the video on demand, if you haven't seen this movie, run right out and get it.

I'm pretty tired today, but feeling great. Who would have thought this spoiled only child would find such joy in serving her husband? From cutting his steak to adjusting his pillows, I am loving every part of this, and I can only explain this as Fruit of the Spirit (Galatians 5:22-23). Tasty stuff, that fruit.

Coffee and Christ, my energy and hope,
Debbie

Update as of Friday May 30, 4pm AZ (1pm Hawaii time)

Today's been an eventful day. Looks like Dan will be in the hospital until at least Monday, the doctors want him fully alert before he goes home, and praise God he is so much better today. So, I'll be staying in Phoenix until next week sometime. Here's more.

* No more bleeding events from the lungs. In fact, here's "wow!" number one: the pulmonary doctors said after all the scans and exams that Dan DOES NOT have emphysema! I'm sure the past few years of weekly IV treatments at Kaiser helped, but we choose to believe in Divine healing!
* They redid his labs today because now the doctors think the bacterial infection was contaminated. They also did a CT scan of his sinuses in case he has an infection or whatever, something that may be tied to the nose bleeds and/or the blood in the urine. The urologist is doing more cultures looking for anything rare, strange or whatever, and they may want to do another scan of the bladder later on, this does not seem to be a big concern to them.
* Blood sugar is still a little high, so they started giving him insulin injections. They still think this is elevated due to the stress of everything, and Dan can now eat a "hepatic" diet meaning very low protein. Sorry Dan, no more portuguese sausage or soda for a while!
* The 2 units of blood they gave him yesterday has elevated the blood count nicely. Ready for "wow!" number 2? Since the transfusions, those "Pac Man" antibodies have gone to work resulting in an elevated bilirubin count, this is one of the 3 labs used to determine his MELD score, and now his MELD is 25 -- the liver doctors have decided to reactivate him on the transplant list for a window of 5 days at #1 on the list, if an organ comes in, they will transplant him! If not, his MELD will go back to 21 and we continue to wait. So, it is entirely possible that he could get his transplant by June 3!!!!! Dan calls this his "wonder window" and if God chooses to bless us with this gift, we will shout Praise God from the rooftops! And if He chooses not at this time, we will still praise Him, for we really want God's very best, and if waiting longer or if taking Dan Home is what's best, we are ready.

The sweetest part of the week has been the heart to heart talks Dan and I have had about everything, and the prayer times we had today (Dan calls it our "aloha time" - aloha meaning love not hello or goodbye). Our good friend Carlye is right: somehow, we are living in some kind of crazy grace! Praise God for the wonderful time I shared with Amy talking about God, hope, and that crazy grace. Amy is more convinced than me that God is using all this for someone else, maybe many years down the line. Hearing her talk about her faith in God warms this mother's heart!

Thanks for your prayers and comments left on this blog. I'll post more updates tomorrow. We love you!

Debbie and Dan

Updates as of Thursday May 29, 3:30pm AZ (12:30pm Hawaii)

It's been an interesting week. You may have already heard, but just in case, we visited the doctor for Dan's regular appointment yesterday and the doctors immediately hospitalized him to run a number of tests. The ammonia level is pretty high and Dan is/was close to coma, very confused, sleeping all day, very jaundiced and weak. This has been going on for a month or so now and we did not know we should have taken him in to have this checked, we thought it was the natural progression of the liver disease. So, long story short:

* Dan will be in the hospital for a few more days (fyi, no flowers allowed on his floor).
* Dan coughed up some blood clots on Sunday. The doctors did an endoscopy and found no bleeding in the esophagus (another complication of liver disease). The pulmonary doctor is doing a chest CT scan now to see if it is from the lungs, they don't think so, they think it may be from sinus drainage since his nose bleeds most of the time (another complication of liver disease).
* Dan's labs showed a bacterial infection, they are trying to find the source and the proper medication. This may be the cause of the blood in his urine.
* His blood sugar is high right now, nor normal for him, they think it's from the stress of the last few days. Please pray that this goes down, we sure don't want to confront diabetes now. Once the blood sugar comes down a little more and the doctor says ok, he can finally eat and drink (the last meal he had was breakfast Wednesday).
* His red cell count was very low again, so they gave him 2 units of blood yesterday, and today's labs looked better, but they have to keep monitoring this since he has those weird antibodies that eat the red blood cells and cause the bilirubin count to go high making him more "the golden boy" (Dan's name for his jaundiced self). I call the antibodies "Pac-Man".

I may have forgotten some stuff, I'll update again probably tomorrow. I'm heading back to the hospital now and will stay overnight with Dan again. You should see the huge private room he has! He even has cable tv with a regular remote, and movies on demand! "Hotel Mayo" is a class act.

Still soaring, crying a little, and trusting God alot,
Debbie and Dan