Monday, August 31

Well, today makes two weeks since Rex received his new heart. We were hoping that Rex would be discharged from the hospital today, but we need to wait another day or more. Over the weekend the heart monitor detected a-fib. Basically, the heart is quivering out of a "normal" sinus rhythm. This only lasts for short periods of time and was detected twice over the weekend so, he needs to stay at least one more day for evaluation. This morning the docs performed his weekly biopsy and x-ray. We haven't heard from the docs about the results which means all looks good.

This weekend I went home to get clothes for Rex and other items for the apartment. It was great to see the kids. It is hard being away from them and knowing that "normalcy" will not resume for a while. The kids are doing great and my mom is doing an amazing job. Grandma is buying all the "fun" food that mom doesn't.... as she should, she is the grandma! Mike came down to Tucson for the day with his girlfriend to visit Rex. Rex really enjoyed their visit and it made for a wonderful day for him. I was able to go to church Sunday and get a much needed dose of some amazing teaching and fellowship. Later the kids, my mom, and I headed east to Jim and Sue's for a great visit and some pretty tasty lasagna. My cousin, Trevor was visiting them and the kids all had a great time swimming and hanging out while my mom enjoyed the adult conversation. I headed back to Tucson and arrived pretty late to the hospital. Rex was pretty gloomy. It wasn't good for him to not have anyone visit all day. I felt terrible :-(

Today has been a tough day. As I mentioned earlier, Rex was really counting on being out of the hospital today and he just had a hard time dealing with having to stay another day. Steve and Marilyn Somnor stopped by the apartment a bit ago hoping to see Rex. They were both a great encouragement to me and covered me with much needed prayer. Many thanks! They then headed to the hospital to pay Rex a visit. I am hoping their visit will be as encouraging to him as it was me.

I best be going. I could ramble on all night, but I need to get back to the hospital. Please continue to pray for Rex as his body heals. Pray specifically for Rex's mind as he deals with all that has happened and all that is to come. Pray that he would set his heart on things above, where Christ is seated at the right hand of God.

Goodnight my dear friends!
Janelle

"Since, then, you have been raised with Christ, set your hearts on things above, where Christ is seated at the right hand of God." Colossians 3:1

Wednesday, August 26

Was awakened by the phone ringing this morning. It was someone from the hospital rattling off dates and times. I hadn't had any coffee yet, wasn't quit sure where I was, gathered myself and asked the lady on the other end to please give me a second to grab a pen. Well, I got off the phone and had scheduled for Rex an appointment every other Monday until the second week in October. The appointment has something to do with IV medicines and will last two and a half hours each time. Found out later from the Ahsleigh, our coordinator, that Rex tested negative for some virus (which 85% of adults test positive for) and because the donor did test positive he would need to receive these meds in orderkeep his body from getting sick which otherwise would happen because of all the immunosuppressant meds he is on.



Pain wise this was a tough day for Rex. He was a real trooper and tried everything he could to get through it. During my visit we reviewed the names and purposes of the many drugs he is taking. We even watched a few videos explaining the meds and many appointments he will have after he is discharged. Ashleigh also went over the various appointments, labs, clinics, etc. Plus, we reviewed the list of medications. There are over 12 different medications he takes and sometimes more than 2 of each and more than once a day. I consider some doses a small meal although, Rex assures me they are not tasty! As a matter of fact, he says some are quite smelly!



Early in the evening Dr. Smith came by and spoke with Rex about the pain and was able to suggest a better way to manage it. Rex was very relieved and has a more positive outlook since their conversation. The last two days were rough and he wasn't able to walk as many laps as before due to the pain. He just called and said he is shooting for 20 laps tomorrow!



He will most likely be discharged from the hospital early next week. Before he can be discharged he has to have a months worth of his medicines, know all the names, dosages and purposes of those medicines, have a blood pressure monitor, glucose monitor, and a really BIG pill box. Wow! Thank goodness Ashleigh ordered all these items for us. She has been a real life line for us both. Early on I wondered why we needed to remain in Tucson for two months. I now know. Almost every day Rex will have one or more appointments at the hospital for either clinic (basic appt with Dr. to check how all is going), labs, biopsies, IV meds, X-rays, rehabilitation, and I am certain I am forgetting something. Seems like a lot, but I am thankful for the watchful eye.



Rex is doing so well that sometimes I forget all that has happened to him and what his body must be going through with all the very strong medicines he's taking. He wants me to thank you all for your cards, prayers and blog comments (I do read them to him!). Until tomorrow, have a blessed evening!



Love and hugs,

Janelle



"My grace is sufficient for you, for my power is made perfect in weakness." 2Corinthians 12:9a

Today was a rough day for Rex. One of the surgeons decided to pull all pain medications except those Rex was already taking for back pain. Since this happened early this morning it is almost all Rex can focus on. The pain has pretty much wiped him out. He was able to walk 7 laps, but was pretty quiet and stayed still most of the day. Please pray that the pain would subside and Rex would be able to focus on more of the positive aspects of his recovery.

Ashleigh, his transplant coordinator came by today to drop off a ton of literature and some DVDs. All of this information is pertaining to his medications, rejection, infection, biopsies, rehab,............ and the list goes on. I was very overwhelmed by all of the information and I am certain Rex was as well. One of the things Rex is expected to do is memorize the names and purposes of all the medications he is taking. He's doing an incredible job so far.

The rehabilitation nurse also paid a visit. She gave us a ton of diet and exercise info and then took Rex's vitals before sitting, after standing standing, walking and then resting. Once Rex is discharged he will go to rehabilitation for ninety minutes three days a week. He will be using the treadmill, recumbent bike and light weights. Rex is going to be so fit before we get home! I better start working out myself before he puts me to shame!

Well, that's all I have for now. Please pray Rex is able to get peaceful sleep tonight. Many thanks and much love.- Janelle

Monday, August 24th

Okay, Mike has informed me that you all think I am a bad blogger for letting so much time pass since my last blog. Apologies to all.

The kids and my mom arrived Friday evening and stayed through Sunday. It was wonderful seeing them all and it was great medicine for Rex to see the kids. He has always referred to Zach as his Pro-Zach! The kids are doing great and most of that is thanks to my mom and the stability she brings to our home. My sister's birthday was yesterday and we all went to dinner Saturday to celebrate. Natalie had to fly home today. It was hard to let her go and I am going to miss her immensely. She has been an amazing help to me and am so blessed to call her my sister and best friend!

Rex is doing excellent. The docs are still very impressed with his recovery. Early this morning he had a little scare. The last IV meds he was on were there to help his heart work effectively. Late yesterday and into the morning he was experiencing racing heart beats and a very high pulse. At one point the staff was very concerned and even had the crash cart on hand. Fortunately, his heart regulated itself and they have since taken him off of these meds. Rex is still continuing to walk his laps every day. He was up to 15 this weekend and has a goal of 20 tomorrow. Every 17 laps equals one mile and Rex walks pretty fast! Pain management has been a struggle Rex has faced the last few days. Some of the nurses are on top of his care, but others aren't stay on top of his needs.

Today was the first of many heart biopsies. The doctor goes in through the neck and takes a small piece of his heart. The are able to check this piece for early signs of rejection and then treat accordingly. We haven't received the results yet, but are hopeful that all is well. Rex will have these biopsies weekly for about 4-6 weeks and the frequency will taper off from there.

I am so thankful to you all for your continued prayer for my family during this last week. The love and presence of the Lord has washed over Rex in an amazing way. There is no other explanation for his calm demeanor and hopeful attitude much less the amazing miracle of all that has transpired. Please continue to pray that this heart would feel very much at home in Rex's body and that his body would continue to welcome it. Pray that Rex would use this "down time" to soak in the Word of God and speak with Him in prayer. Please pray for my mom as she is still adjusting to a new schedule and responsibilities and for the kids as we are still away from them. Most importantly, please pray that the Lord would be glorified in all Rex and I say and do while we are in Tucson. Pray that many would come to know Jesus as their savior through our story.

Precious friends and family words cannot express how much you all mean to us. Thank you! I promise to try and update more frequently. Have a wonderful week and in the words of Rex, God Bless!

"But because of His great love for us, God, who is rich in mercy, made us alive with Christ even when we were dead in our transgressions-it is by grace you have been saved." Epshesians 2:4-5

Thursday

Last night Rex was able to walk 4 laps and get two of his IV lines removed. The doctors are very impressed with his progress. When I arrived today Rex's blood pressure was pretty high and I quickly found that he was having a very hard time with the pain around his incision. The doctors are trying to wean him off of the IV pain medicines and I think they just did too much too soon. The nurse and doctor worked quickly to get him something to help lessen the pain and his blood pressure resumed a safer reading shortly after. As a result of the unbearable pain, the magnitude of all that has transpired in a short period of time, and the side effects of the medicines, Rex is experiencing a roller coaster of emotions. He feels as though he is coming across as a whiner or complainer when he complains about the pain. Everyone (nurses, doctors, Natalie and I) have all told him what trooper he has been and that it is okay and expected that he may need more medicine at times. Please pray that Rex's pain would be managed and that he would not fall into a state of depression. This is a terrible side effect of many of the medicines he is taking, but that doesn't mean he needs to be affected by it.

On the upside, Rex has been doing so well that he has been transferred out of the ICU and into a regular room. He has his own room and is still under incredible care. He was down to only one bag of IV meds and has only two IVs remaining. He is taking all of his other medicines orally and will begin formal training on these meds with the nurses tomorrow. The dietitian dropped off his diet and sat a chatted a while. I must say Rex has made excellent food choices the last few days. As many of you have heard from me in the past, this is not always the case. I am very proud of his positive attitude. At every opportunity Rex is giving all glory to God for his heart change, both physical and spiritual.

My mom is taking care of the kids and doing an amazing job. So well in fact, that Zach didn't even want to talk with me on the phone today! My sister has been an amazing support to me. Just having her here is a comfort. We ran errands today getting the apartment stocked with toiletries and food. She has been struggling with sciatic pain all day (poor thing!). Please keep both my mother and sister lifted in prayer. They have taken over most of my responsibilities which as allowed me to focus all my time and energy on Rex.

Rex and I continue to thank all of you for your many words of encouragement and prayers. We know that God is in control and would not want it any other way. Much love to you all!

"but this happened so that the work of God might be displayed in his life." John 9:3b

Tuesday and Wednesday

Tuesday - Well, today at 3am Rex was breathing on his own so well that they were a able to extabate(remove breathing tube). This is a big deal. His vocal chords needed a little time to recover, but he was able to talk a little later. Today is the worst day for pain. Later this morning Rex was able to get out of bed and sit in a chair for just over an hour the first time and for another hour later in the day. Dr. Smith came by later in the day to remove the chest tubes and check-up on Rex. Rex asked about being able to make contact with the donor's family down the road. Dr. Smith encouraged Rex to view this heart as belonging to him and to grasp hold of this new life. She said that she believes with everything in her that there are no coincidences in life and that this heart was meant for him at this time. She said that God meant this heart for him. Amazing! God's fingerprints are visible everywhere! After much healing and a little further down the road we can anonymously send a letter of gratitude to the donor's family and go from there. Please continue to pray for that family. Pray that they would so tangibly feel the love and comfort of our amazing Lord.
The nurses here, well everyone here, has been incredible.

Wednesday - Today Rex walked two laps at 6am, then sat in a chair for an hour. He ate his first solid meal since Sunday night. He had oatmeal, fruit and a little nible of a cinnammon role. Just before noon he walked 3 laps and sat in the chair again. They were able to remove the folly just a while ago. Rex's spirits are high. The pain is becoming a little more manageable. He is doing incredible. I am very proud of him! He has come so far in just a few short days. Rex is giving all the glory to God. Please continue to pray that his body would not reject this new heart, that he would not develop any infections and that Rex would remain calm and peaceful in the midst of all the changes.

Rex wants to thank everyone for their prayers. He nows that God has orchestrated this entire miracle. He wants me to thank everyone at the men's bible study for their prayers!

Monday Morning

We were headed to Tucson and began praying over the coming events. It hit both of us that a family somewhere was dealing with a very real loss and Rex began to pray over that family. God's peace and comfort was very real to both of us during our two and a half hour car ride to Tucson. Just before 4 am we arrived at University Medical Center and were taken to ICU to wait. We were told that until one of the surgeons actually layed hands and eyes on the donor heart we were in stand by mode and that this could be a dry run and be sent home if there was anything wrong with the heart. At 7 we were moved to the operating room holding area where Rex was prepped for surgury. He had two IV lines ready to go and we were looking at possibly beginning the process in less than an hour. Shortly after we were told that the harvest team was just leaving and that they would arrive in San Jose in a few hours and we would know more than. San Jose! Did I hear that correctly? We couldn't believe our ears. For those of you that don't know we moved to Arizona from San Jose. We were then moved back upstairs to the ICU to wait for word. We prayed that the heart would be healty and waited. Finally, at 11 am we got word the heart looks great! We prayed for one more time and at about noon they took Rex to the OR. At 3 pm they called me to let me know they had Rex on bypass and the heart had arrived they were beginning the transplant. Just before 6pm Dr. Smith came out to the waiting room to tell me everything went great and that I would be able to see him in a short while. I was overjoyed and a little nervous to see him. I had been let known that there would be many tubes and such still connected. At 6:30 I was able to finally see Rex. His color looked amazing! He was still very sedated and had a breathing tube in, but he looked great. My amazing sister arrived later that night and was able to be a great support to me while I tried to be strong for Rex. He was in and out of consciousness most of the night. Rex developed a fever and experienced some tachycardia (irregular, fast heart beats) over the course of the night. I was assured these were expected. For me, this was the scarriest part of the whole process to date. God is good and has given us both an incredible sense of peace and calm.

The Calls!

Friday - After three and a half years of battling with Congestive Heart Failure and a very damaged heart and one year of working to get Rex listed on the heart transplant list we finally received the call - Rex was on the list! Sue, his transplant coordinator told Rex we would be getting a pack of info in the mail and that she didn't see him on the list much longer than a few months due to his rare blood type. We were overjoyed and a little frightened of what was to come. Rex was not feeling well that weekend and was resting while I cleaned the house like a mad woman for fear that I wouldn't be prepared for the time when we got "the call". We talked about all the things we needed to do to prepare the kids, our house, my work, etc. for the big day.

Sunday - Rex was still not feeling well and was resting. The kids and I headed to church for the morning and then back home. I continued to clean like a mad woman (yes, the house was that untidy!) Rex was feeling better so we all climbed in the car to take Haley to the movies with her friends and to take ourselves to church. Rex had an amazing night at men'e bible study and the men all layed hands on Rex and prayed for him. After, we all headed to Chili's for dinner to celebrate Rex being listed. It was a great evening. Shortly after we got home, the kids and I headed off to bed and Rex apparently went out into the garage to fix the a/c on his car. At 1:00am Rex came into the room to wake me, hand me the phone, and tell me they had a heart for him. As most know, Rex is a prankster and I was irritated he thought this was a funny joke. I picked up the phone and could not believe my ears! Ashleigh, one of he transplant coordinators was on the other end. She told me they had a donor heart that matched and we needed to make our way to Tucson. She told me more info about where to check in and that Rex could not eat or drink from this point on and some other things. I was in shock! I changed into clothes and went in search of Rex. I found him in the garage under the hood of his car! We grabbed a few things, woke Mike to tell him we were leaving and began our trip to Tucson. It all happened very fast and we were both riddled a variety of emotions.