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

Next doctor visit is May 28

It's time for Dan's next big doctor appointment on May 28. He had lots of lab tests the first week of May, and on May 28 will have another set of CT scans and then we see the doctor for Dan's current status. We also get to meet the pre-transplant coordinator, Lindsey, whom we have spoken to but have never met; I suspect Dan is very close to getting a liver now that we are meeting with her. The last time I looked at the hospital waiting list (on the United Network of Organ Sharing website) Dan was #1 or #2. I will be in Phoenix from May 24-31, and I can't wait to spend time with my best friend, Dan. Amy and Swen will be in Phoenix from May 21-26 or so, I can't wait to spend time with my wonderful daughter and grandson. Dan's mom and dad will be taking a well-deserved trip to visit relatives and friends in Wisconsin and Missouri.

"For God...made His light shine in our hearts" (2 Cor. 4:6 NIV),
Debbie and Dan