Sunday, August 31 updates

Recovery continues, though very slowly. Dan walked around the floor once today, I think he enjoyed being out of bed for once. He also sat in a chair several times today. His legs look almost back to normal in size now. However he has considerable swelling in his abdominal area so they continue giving him Lasix to flush it out.

Results of the swallow test were not good, probably because his muscle control is not yet back to normal and he is not 100% mentally coherent, so the feeding tube stays in a few more days and meds are given either by IV or pills dissolved in a little water and injected into the feeding tube. The only thing he gets orally is what I like to call a "water lollipop" - it's a small sponge on the end of a lollipop stick dipped in ice water and squeezed out a bit. It keeps his mouth moist and he gets a drop or two of water to swallow. They will repeat the swallow test in a few days.

They will also be repeating the echocardiogram in a few days, to be completely sure there are no clots or cardiovascular problems, the cardiologist will keep us updated. And they continue giving him Metoprolol to keep his heart rate and blood pressure controlled.

The other development today is a slight bacterial and fungal infection in his kidneys and they are treating these with 2 different antibiotics. These infections are very common after transplant since his immunity is suppressed.

Recovery seems to mean more than just "getting well again". For Dan, it involves every organ sort of relearning how to function again. The sick liver caused the other organs to have to work harder and they got weaker themselves. Now he has a young healthy liver "raring to go", but the other organs, tired and sick, have to catch up now. I keep thinking of the body of Christ. When one member of the Body doesn't use their gifts, the other members take up the slack and often get burned out. Then the joy of a new believer in the Body...their excitement and passion for Christ shocks the whole Body, injecting the long-time members with pure joy, a call to purity and passion, and the whole Body recovers and becomes healthy.

Guess I'm rambling, but God speaks to me through such everyday things, lessons I greatly desire to share with everyone. Until the next update, look around...God is always at work around you in your everyday things.

Debbie and Dan

Saturday, August 30 updates

What an awesome morning, Dan is much less confused today, he knows where he is and is able to carry on a conversation. He moved out of CCU today to the Intermediate Care pod on the 3rd floor. What a huge room! A corner room with a great view, the room has a love seat, 2 recliner chairs, a round table with 2 chairs (that's where I am now, with wireless internet hookup), closet, restroom, even a painting on the wall. And thanks to Amy, she brought a new framed photo of Swen for his bed table. And did I tell you Mayo has cable tv and free videos on demand? Talk about luxury recovery. The PT came by and Dan was able to walk down the hall for the first time, and sat up in a chair for about an hour. According to the cardiologist and nephrologist, his heart and kidneys are doing well, and his pancreas must be better as well since he didn't need an insulin injection this evening. We are waiting for the results from the 2nd echocardiogram and today's swallow study to determine if he is able to go from tube feedings to regular food and pills. Today is the first day Dan has said he is hungry and what did he ask for? A Baconator and soda from Wendys! Sadly for Dan, the first item on his menu will be pudding once the doctors determine he can tolerate it.

As you worship tomorrow at church, take a look around...if you know Christ as your Savior, you are part of the body of Christ...and just like Dan's liver function impacts his other organs, your life impacts other members of the body of Christ, just as their lives impact you. So encourage someone tomorrow, it will most definitely encourage you right back!

Debbie and Dan

Friday, August 29 updates

Today is day 5 in the hospital, really day 4 since they don't actually count Monday/surgery day. Dan's doctors are very pleased with his progress. His new liver is working very well, in fact it is working better than the rest of his organs, who would have thought that. Dan's had other surgeries, but this one is definitely the most trying on the rest of his body and will take the longest recovery. A new liver shocks the entire body. Wednesday night his heart had afib (atrial fibrillation) meaning an irregular heart rhythm. His heart rate raced to 225, so between the paddles and 2 different meds they got it back to normal (thank God I was asleep when this happened or I would have needed the paddles as well). The cardiologist is following closely and they just took a second echo cardiogram to take another look. The kidney doctor has been by several times, kidney function has been slow but improving. He's off the insulin IV and is getting injections now, hopefully his pancreas is also starting to stabilize. The doctors had told us all this might and probably would happen, so we are not devastated. He is getting more verbal and more awake, but also more delusional at times. Like today, he knew who I was and where he was and that he had surgery, and soon after was telling me about the clowns and pretty flowers in the room. We wish the encephalopathy would have cleared up right away, however the doctors say it will probably take awhile for him, considering how very sick he was and also the anti rejection meds and steroids can also cause this. Amy is in town now and has visited several times, and Dan lights up when he hears her voice.

Your emails, phone calls, blog comments are very welcome and bring us comfort and strength. We pray for you also, that God will be your great I AM (Exodus 3:14)...that He will be to you, today, all you need Him to be. Believe me, you can hang on to that heavenly thread, if it holds me, I know it will hold you too.

Debbie and Dan

TRANSPLANT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Yippee! Shout it from the rooftops! Dan has a new liver!

Monday, August 25
7:45am....I am still sleeping and Dan is reading when we get the call to be at the hospital within the hour, that a liver has been found.

7:47am...I am jumping up and down like a kid on Christmas morning, running out to the kitchen to tell Dan's parents, then we race to get ready and head for Mayo.

8:30am...We get to Mayo to register and begin the wait. For the next 9 hours, Dan gets checked into a room, has lots of labs and a chest xray, has to take a shower with this brownish betadine soap, and we wait. The surgeon met with us and explained the donor was in Tucson, a few hours south of Phoenix, and was 19 years old. When someone is an organ donor, after they are declared brain dead, their body is kept "functioning" by machines to keep the organs ready for transplanting. Our surgeons then flew to Tucson to "harvest" the liver and then flew back to Mayo, dodging a big monsoon storm on the way.

6:00pm...The surgeon arrives in the room, said the liver was a perfect match and healthy to give to Dan. Dan's parents and Dan's sister Debbie were there with me, and we all took a turn to say aloha to Dan, tearfully hoping he would make it through surgery. Throughout that long day, Dan was so peaceful and encouraging us, always asking for each hospital worker's first name so he could talk to them and thank them, even the young orderly that pushed him in the wheel chair. Dan's blood pressure and heart rate were normal, even lower - I was glad they didn't check mine! And in typical Dan fashion, on the operating table and before they put him out, he asked the team to gather around the table and he prayed for them.

Not sure of the exact times of the rest of the evening. The nurses came to the waiting room to give us progress reports, this was so appreciated, it made the wait shorter also. As we were freezing in the waiting room, we were blessed with a visit from Pastor Berry and his wife Nancy and Worship Leader Pastor Keith and his wife Kathy from First Southern Scottsdale, their warm fellowship came at just the right time.

Somewhere after 10pm...the surgeon comes out with the great news that the surgery was a success. The time was shorter than expected (3 hours instead of 4+ hours) and they only had to give him 2 units of blood instead of the expected 8-10 units.

Somewhere around 12midnight...we get to see Dan in CCU. I've never seen so many IVs, hoses, drains, airway, feeding tubes, you name it. Just a quick visit this time to see he was ok.

Tuesday and Wednesday...


Everything's kind of a blur, praise God for caffeine. The doctors are pleased with Dan's progress, his labs look good, the CT scan of the new liver looked normal. Because the new liver shocks the other organs with the fresh new flow of blood throughout the body, he will be diabetic for a while so he will be on insulin hopefully just a short while. And they started the anti-rejection meds. We learned that most transplant patients have at least one mild episode of rejection so if this happens they just change his anti-rejection meds to correct it. It's possible for him to have liver failure, but since the organ is young and healthy, I choose to believe this will not happen. They are also giving him some diuretics to help his kidneys get over the shock to them as well. It's amazing how all our body parts and organs work together and how a problem with one will affect all the others. Guess that's why Paul uses the body as a picture of the church in 1st Corinthians 12:12-31. And I am reminded from Psalm 139:14 that we are "fearfully and wonderfully made" - I got the part of being wonderfully made, now I get the part about being fearfully made.

I'll post some more in the next day or so. We are so grateful for everyone's prayers, they are what keeps us going.

Soaring,


Debbie and Dan

Update

Dan received 2 units of blood on Wednesday, then he had labs yesterday. The red cell count is better, I think they said 8.5, so they won't need to give him more. His ammonia was down to 74, that's so much better that it has been for a while, he's able to read again for short periods of time - yay! The sores on his legs still look nasty, but seem to be healing slowly. And God knew we were in need of some laughter, a few Netflix DVDs arrived yesterday, one of which is an all-time favorite, laugh-out-loud movie called "The Private Eyes" with Don Knotts and Tim Conway. If you've never seen it, run right out and borrow it - clean, silly, slapstick humor.

I received the video from last Sunday's worship service. Unfortunately, I won't be able to upload it to God Tube or this blog as it exceeds the maximum file size requirements. I will be asking the church if we can purchase additional copies for family and for our church in Mililani. Thanks for your understanding.

Hanging on by a thread from heaven.....

Debbie & Dan

Answered Prayer

Mahalo to everyone for praying for us. Want to hear some praises?

* Sunday's worship service went well. We were able to be there and share the final testimony live. They said a special prayer for us at the end of the service, and many came by to tell us they were blessed. Such a solid confirmation that our circumstances are not about us but for others. We were also thrilled to see a few surprise guests (Don and Lola Penfield and Calvin, Karen, and Kyle Slaan). Pastor Keith, the worship leader, graciously made a video of the service for us so when we get it, we will upload it to God Tube and link it to this blog for all to see. Pastor Derrick at Mililani said he'd like to show the video for a Sunday night service, we'd be honored!

* No infection! Dan's labs came back showing no infection, so he's still on the list. The doctor wants him to finish out the antibiotics though, and the sores have stopped draining finally so we can start airing them out in hopes of finally healing over, and they are painful to treat.

* A good friend asked me recently how we are doing financially. We want to praise God that He has been providing for us through LTD payments from our church and from the Hawaii Pacific Baptist Convention. Fellow pastors, this is a great blessing so if your church is not helping you with insurance support from Guidestone, talk to your finance committee. Hawaii pastors can also get more information from Jerry Sulliban at HPBC.

Another update:

* Dan's red cell count is down again, today it is 7.5 (normal is 13-15 I think). So he needs another transfusion, we go tomorrow morning, and it usually takes 3-4 hours for 1 unit, so if he needs more than that, we'll be there a while, hopefully not overnight. Then we go back Thursday morning for more labs.

Well, it's time for Dan and I to take our evening 10 minute walk around the house. Love and aloha to everyone,

Debbie and Dan

Prayer Request

We saw the doctor today, looks like Dan may have another leg infection. The front of his lower left leg looks sunburned and feels very hot, and he has more "weeping" blisters on both calves. The "sunburn"-looking area is a sign of possible infection, so the Dr. gave Dan 2 strong antibiotics. They are also testing the fluid from the blisters in case there is infection, we should get a call this weekend with the results.

We ask for your prayers again that if there is infection that it will go away very soon, so he won't have to go on Status 7 again, meaning he's off the transplant list until the infection is gone. The Dr. thinks there will be a significant improvement by Monday, if so they can put him right back on the transplant list.

We were pretty down about all this, but leave it to God to bring peace. We decided to go listen to the choir rehearsal this evening (preparing for Sunday's service with out testimonies). The worship leader said he added a song he thought about today which we didn't know about, I forget the title but the words said the Lord says Come, I will sing over you. Reminded us immediately of the scripture in Zephaniah 3:17 - The LORD your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing." The choir songs are very beautiful, haunting harmonies, delicate orchestrations, soloists with amazing voices, and we really felt quieted with God's love, and moved at the thought of God wanting to sing over us. So, we are still a little grumpy, but we are living and soaring in the Truth.

Aloha,
Debbie and Dan

A Long Week

It's been a very long week. After Tuesday morning labs, Mayo called us at dinner time saying Dan's red cell count was very low again and we needed to come in right away for another transfusion. We headed for ER around 7pm Tuesday evening and did not return to the house until Thursday evening 6pm. Because Dan has those antibodies in his blood, it would take 8+ hours to get the blood for transfusion, so he was admitted to a room back on the 3rd floor around 12:30am. The blood arrived and transfusion began around 6am Wednesday morning. He was given 2 more units throughout the day and they did an GI scope to check for bleeding, they found no bleeding but saw the many swollen vessels and veins in the abdomen area. The liver doctors and hemotologists conferred and determined that his sick liver is causing his blood to eat up his red cells, that's why the count dropped again. He was still weak so they kept us Wednesday night and gave him a 4th unit of blood Thursday morning. Labs showed the red cell count was better so they discharged Dan Thursday evening. Before we left, we were told that Mayo has requested 8-10 units of blood for Dan and has it saved in the blood bank "refrigerator" with his name on it, this is saved for the transplant surgery should he need transfusions at that time, which is very likely. And Dan is still #1 on the hospital waiting list.

Dan had IVs in both arms while in the hospital, and Friday morning we woke up to his right arm swollen and red at the IV site. Friday mornings are his regular labs, so it was back to Mayo. That afternoon his arm did not look any better, so we headed back to Mayo and went right back to the 3rd floor to look for one of his nurses or a doctor. Thankfully, we saw Kelly, one of the PAs. After looking at Dan's arm, she ordered antibiotics to ward off any infection that might be starting. She also said we needed to come in for more labs on Sunday morning to check the red cell count, in case it was low again and another transfusion might be needed, she said to have her paged when we got there and she'd check Dan's arm again. So we picked up the prescription and headed home.

We woke up Saturday morning to find a huge fluid filled blister on Dan's right calf. He's had other blisters we've treated but nothing like this, so you guessed it...we headed back to Mayo ER around 7am. The ER doctor drained it, took a sample of the fluid to test for infection, bandaged it up, and off we went. The ER doctor had contacted Kelly also.

The worship leader from the church we attend with Dan's folks, First Southern Baptist Church of Scottsdale, called us asking to meet with us so while Dan was resting Saturday afternoon, I met with Keith and his wife Kathy. Keith is planning a choir concert for next Sunday morning, Aug. 17, and after reading our blog he felt led to plan the theme of the concert around how God sustains us in the storms of life, and he asked us to share our testimony. Dan and I are blown away by this incredible honor. If all goes as planned, Keith and his techies from church will come to the house this Wednesday morning to videotape our testimony, broken down into five 3-minute videos that will be played in between the choir songs. Our hope is to be able to be at church Sunday morning and be able to give the last testimony live, if not, all will be shown by video. We are grateful that Keith offered to videotape the entire service and give us a copy, in case we can't be there. What a confirmation that our circumstances really aren't about us, but are for others, to lead all to worship the Lord Jesus Christ.

Anyway, we did do labs this morning (Sunday) and met briefly with Kelly who examined Dan's arm and leg and determined they look much better. We will be back at Mayo on Tuesday morning for his regular labs, then see Kelly again at 11am to follow on the red cell count.

After such a crazy week, and hoping we don't have to go back to Mayo on Monday, we hope to finally go out to see a movie, not sure which one, possibly Kung Fu Panda if it's still in the theatre.

To God be the Glory,
Debbie and Dan

August 4 updates

Can't believe it's August already. Dan's MELD is 29 and he's still #1 on the hospital waiting list. He's been weaker the past several days, walking and talking a little "hamajang" (not quite right) so Mayo will start checking his red cell count tomorrow, if it's low again he'll get another transfusion. He's also having more bouts of stomach pain after eating, complications from the cirrhosis. We're thankful his legs, still swollen, are not leaking anymore, though we continue to watch a few blisters developing. Per Mayo, on the days he sleeps most of the time (another complication of the encephalopathy from the high ammonia levels), he needs to walk at least 2 times a day for at least 10 minutes each. We've done this, walking laps in the house. Dan is pretty tired these days, so we only get out on Tuesdays and Fridays to Mayo for labs, then breakfast at the cafeteria. When Dan's folks are home, I can run out to Walmart or the mall for a few hours, and when Dan's sister Debbie and the kids come over to swim, I'm out there with them - love it! Praise God for Wally and Lorrie and our Mililani Baptist ohana that continue to love on my Mom in Hawaii.

I've been thinking about this long wait, how I don't get God's timing. God reminded me of an important verse describing an important part of His character: "But do not forget this one thing, dear friends: With the Lord a day is like a thousand years, and a thousand years are like a day. The Lord is not slow in keeping his promise, as some understand slowness. He is patient with you, not wanting anyone to perish, but everyone to come to repentance." 2 Peter 3:8-9 NIV. A good friend reminded us that God is surely continuing His work in and through us, these verses confirmed that. In fact, we've been praying for the donor and family to be Christians, these verses made me think that what seems like God's slowness may actually be His patience and plan to bring the donor and family to Himself before the transplant. At least I pray this is true. So we continue to wait, rejoicing in God's amazing grace and love and His perfect plan for our lives.

Aloha from the desert,
Debbie and Dan