So, some time has passed since my last post and many of you are wondering what has happened and how Rex is doing. This week marks the twelfth week we have been in Tucson! The good news is that Rex is doing very well. So well that we will most likely be home sometime next week! Recovery since discharge has been slow going. This time around was much harder both physically and emotionally. Physically, Rex's body took quite a beating from the infection making it hard for him to stand much less walk. Physical therapy worked with him while we were in the hospital and since discharge he has been going to cardiac rehab three times a week. He is now up to the same level of intensity and duration as he was just prior to the infection and continuing to improve daily. Emotionally speaking this has been a ride for us both. Rex was sedated for most of the hospital stay and he has had many questions and is still working on digesting all the information. While we know that the particular infection he contracted was rare, he is still fearful of getting sick again. Being immunosuppressed is a scary place to be, especially with the flu season rearing it's ugly head everywhere we turn. We are praying that this is the only obstacle we will need to face post transplant.
So far all the tests results look good. The infection appears to be beaten and all of Rex's biopsies have come back negative. He does appear to have some blood clots in his lungs which they are treating with Warfarin, a very strong blood thinner. Other than that all is looking really good. Once we are home Rex will need to return to Tucson monthly for biopsies, but all other tests and clinic appointments can take place in Phoenix.
My ongoing prayer has been that Rex would stay healthy and continue to grow stronger each day. Also, that Rex would release his fears and instead focus that energy onto this faith.
"For God gave us not a spirit of fearfulness; but of power and love and discipline." 2 Timothy 1:7
-Janelle
Saturday, November 7, 2009
Tuesday, October 13, 2009
Tuesday, October 13
Today was a day of waiting. Rex was told earlier this morning that he would be discharged later today. For many hours he waited expectantly for his discharge. Unfortunately, his biopsy results did not arrive today and he needs to stay one more night. Since his transplant, all of his biopsy results have been great and we are not concerned about these results. Rex is doing awesome and continues to grow stronger each day. He was his very chipper and chatty self today, cracking jokes and sharing stories with all the nurses, techs, and docs. He's anxious to get back to the apartment, but handled the news of needing to stay one more day very well. He should count this extra day as a blessing considering the docs dropped the heart healthy diet restrictions while he is there (meaning all food is available to him)so that he can regain his appetite after being tube fed so long. We all know that once he's home, he's mine and I don't mess around with his diet! Any who, all looks for great for him coming home tomorrow sometime.
Earlier today I was thinking over the last 12 days and marveling at how amazing God is. Sometimes, we are blessed enough to be used by Him, other times we get to see Him at work though others, and then there are those times when He uses no one and we get to stand in awe of His majesty! These last 12 days I saw God work through doctors and nurses and I was able to see God perform a miracle in healing Rex all on his own. I consider it a privilege to be able to witness it all. I also know that should the outcome not have been what it is, God still would have been very much in control and would have been there to lead us all down that other path. I was reading Psalm 96 tonight and felt compelled to share a portion of it with you all.
"Sing to the Lord a new song; sing to the Lord, all the earth.
Sing to the Lord, praise his name; proclaim his salvation day after day.
Declare his glory among the nations, his marvelous deeds among all the peoples.
For great is the Lord and most worthy of praise"
Psalm 96: 1-4a
I do so praise God for the work he has done in Rex's physical healing. It is clearly His hands that have healed and I look forward to the continued great work he will do in Rex's life. Please join me in giving praise to our great God for his marvelous deeds!
Earlier today I was thinking over the last 12 days and marveling at how amazing God is. Sometimes, we are blessed enough to be used by Him, other times we get to see Him at work though others, and then there are those times when He uses no one and we get to stand in awe of His majesty! These last 12 days I saw God work through doctors and nurses and I was able to see God perform a miracle in healing Rex all on his own. I consider it a privilege to be able to witness it all. I also know that should the outcome not have been what it is, God still would have been very much in control and would have been there to lead us all down that other path. I was reading Psalm 96 tonight and felt compelled to share a portion of it with you all.
"Sing to the Lord a new song; sing to the Lord, all the earth.
Sing to the Lord, praise his name; proclaim his salvation day after day.
Declare his glory among the nations, his marvelous deeds among all the peoples.
For great is the Lord and most worthy of praise"
Psalm 96: 1-4a
I do so praise God for the work he has done in Rex's physical healing. It is clearly His hands that have healed and I look forward to the continued great work he will do in Rex's life. Please join me in giving praise to our great God for his marvelous deeds!
Monday, October 12, 2009
Monday, October 12
Rex was officially moved out of the ICU and put into a regular room this morning. His strength has improved dramatically over the weekend and he was able to walk laps around the unit several times today. His appetite appears to be getting better as well. The Infectious Disease people came by today and let Rex know that the antibiotics he is own intravenously are available in pill form which will allow him to leave the hospital. He had another heart biopsy today and so far all is looking great. If all continues to go smoothly Rex can be discharged as soon as tomorrow! His spirits are high and he looking forward to getting back to the apartment and beginning cardiac rehab again. No word yet on how this has impacted are return date to Tolleson. We were originally scheduled to be heading home this weekend, but with the infection and subsequent reopening of his chest to clean it all out I am not certain if that is still possible. I am just glad to see him doing so much better. Everyone at the hospital is amazed at his speedy recovery. Rex and I both know and acknowledge that God's fingerprints were all over this! I am looking forward to being able to blog about Rex's future discharge.
Goodnight and as always, thank you for your prayers!
Goodnight and as always, thank you for your prayers!
Saturday, October 10, 2009
Saturday, October 10
Things have improved drastically over the last couple of days. Rex was able to sit in a chair for a few hours and then stand assisted and take a few steps yesterday. The feeding tube was removed and he is able to eat on is own again. Physical therapy has stopped by the last two days to help him regain his strength and get him up and walking again.
Dr. Smith stopped by last night and told Rex that as soon as he can walk on his own, manage his pain with pills (as opposed to IV as currently done), and eats enough to provide his daily calories he will be discharged from the hospital. Looks like this could be happening in a few days!
The infectious disease people will let us know how long he will need to stay on the antibiotics to get rid of the infection, but so far all is looking really promising. That's all the update I have for now. Rex is very excited to begin the healing process and get back to where he was before all this craziness happened. Thank you all for prayers and encouragement!
Dr. Smith stopped by last night and told Rex that as soon as he can walk on his own, manage his pain with pills (as opposed to IV as currently done), and eats enough to provide his daily calories he will be discharged from the hospital. Looks like this could be happening in a few days!
The infectious disease people will let us know how long he will need to stay on the antibiotics to get rid of the infection, but so far all is looking really promising. That's all the update I have for now. Rex is very excited to begin the healing process and get back to where he was before all this craziness happened. Thank you all for prayers and encouragement!
Wednesday, October 7, 2009
Wednesday, October 7
Last night and this morning Rex made some great progress! Inn the wee hours of the morning the doctors removed the chest tubes, five in all. Luckily, he was a little sedated for that and doesn't remember it happening as it is apparently very painful. As of one this afternoon he is officially off of the vent and the tube was removed. The feeding tube will stay in place a day or two longer or until his throat is healed and he can eat and take medicine again orally. He has an oxygen mask on to help keep his saturation levels up, but he is talking here and there. His voice in dull and scratchy sounding and this is normal after being intubated, especially for as long as he was.
Rex is still very sick and will be recovering for a while. How long? I don't know. The outlook has been and continues to be to take it one day and at a time. The goal is to continue to fight off the infection, do the best they can to keep him from developing another, and get his body strong and recovered. It seems like we are moving at a snails pace, but we are moving forward and it is great to see him awake, alert and off of the ventilator.
Many thanks to all who have been praying as this progress is clearly the work of the Lord.
-Janelle
Rex is still very sick and will be recovering for a while. How long? I don't know. The outlook has been and continues to be to take it one day and at a time. The goal is to continue to fight off the infection, do the best they can to keep him from developing another, and get his body strong and recovered. It seems like we are moving at a snails pace, but we are moving forward and it is great to see him awake, alert and off of the ventilator.
Many thanks to all who have been praying as this progress is clearly the work of the Lord.
-Janelle
Tuesday, October 6, 2009
Tuesday, October 6
Another rough day for Rex. Lots of pain and frustration that he cannot communicate because of the sedation and tubes in his mouth. The morning began with them once again attempting to extubate and failing. His pain has been excruciating and it is making it difficult to get good slow deep breaths. I was very frustrated with everything that has been going on these last two days. They would bring him out of sedation so they could extubate only to cause him incredible pain which makes it impossible to extubate and then resedate him and then all stand around complaining that they are unable to extubate. It just seems like there are too many cooks in the kitchen and I want a plan in place to help him and for them to stop messing around causing him pain until they have a plan. Yesterday, Dr. Smith had a plan and it hadn't been finished yet and all these other doctors come around in the evening and early morning trying to do their own thing. AAGH! Thankfully the social worker and transplant team made rounds this morning and I was able to express my concerns and I think everyone, including myself, have a better understanding of what needs to happen. It has been very hard to see Rex struggling so much these past few days and both of us feel very helpless and frustrated.
The good news is that the cultures they took yesterday came back negative (that makes 2 negative cultures this week) and by the end of the night they will remove the chest tubes. His temperature has been normal all day, the first time since we arrived last Sunday. The Infectious Disease team is very optimistic that Rex will be able to beat this infection. Great news considering the bleak report we got just one week ago. Dr. Smith just put in orders for Rex to be taken off of the sedative and they are going to give him pain meds that he can control with a button. I am praying this gives him some much needed relief. I always feel better after we have seen Dr. Smith. She really understands Rex and always comes up with a plan that addresses all the issues and get things done.
Please pray for Rex to be able to be extubated in the morning. It is not good to be intubated so long and it is very important they do this soon. Pray that his pain can be controlled and that the infection would continue to be destroyed by the antibiotics. I also ask that you pray for me. Today was an emotionally tough day for me. I know it doesn't even compare to what Rex is going through, but I am struggling to keep it together and I really need to be strong for him. All day I have been praying and meditating on Romans 12:12, "Be joyful in hope, patient in affliction, and faithful in prayer." Please pray that for us both.
Resting in Him,
Janelle
The good news is that the cultures they took yesterday came back negative (that makes 2 negative cultures this week) and by the end of the night they will remove the chest tubes. His temperature has been normal all day, the first time since we arrived last Sunday. The Infectious Disease team is very optimistic that Rex will be able to beat this infection. Great news considering the bleak report we got just one week ago. Dr. Smith just put in orders for Rex to be taken off of the sedative and they are going to give him pain meds that he can control with a button. I am praying this gives him some much needed relief. I always feel better after we have seen Dr. Smith. She really understands Rex and always comes up with a plan that addresses all the issues and get things done.
Please pray for Rex to be able to be extubated in the morning. It is not good to be intubated so long and it is very important they do this soon. Pray that his pain can be controlled and that the infection would continue to be destroyed by the antibiotics. I also ask that you pray for me. Today was an emotionally tough day for me. I know it doesn't even compare to what Rex is going through, but I am struggling to keep it together and I really need to be strong for him. All day I have been praying and meditating on Romans 12:12, "Be joyful in hope, patient in affliction, and faithful in prayer." Please pray that for us both.
Resting in Him,
Janelle
Monday, October 5, 2009
Monday, October 5
From midnight to around 8'ish Rex was able to breathe on his own. In the morning they started to take him off of the sedative to get him ready for extubation. Unfortunately, he was in so much pain that he was unable to sustain his breathing and they decided to sedate him again and try later. It is a very tricky balance between keeping his pain managed and knocking him out completely.
He started to have some trouble breathing and keeping his oxygen saturation levels up. They put him back on the ventilator and was given a blood transfusion to help bring his levels back up. They put him back on lasix to help remove excess fluids and the respiratory therapist is also given him breathing treatments and working to release some of the gunk stuck in his lungs.
Dr. Smith ordered a CT scan of his back to see if there is anything else causing this unbearable back pain. He has been experiencing much worse pain since last Sunday night, a few hours after we came to the hospital. A new air comfort mattress arrived and should be set up later this evening. This will hopefully alleviate some of the pain. The doctor also ordered a bunch of cultures to check for the possibility of additional infections. Lots going on today and thankfully Rex was sedated for almost all of it.
I won't know much more until after all of the results come in sometime tomorrow. I suspect they will also do heart biopsy tomorrow to check for rejection. Those are pretty routine and he hasn't had one in two weeks. I do feel so much better since Dr. Smith is back in town. She is very thorough and knows Rex well. Rex had an amazing nurse today. She was very busy tending to Rex's needs and still took the time to explain everything to me and was very tender with Rex. Nursing is a tough job and I so appreciate each one who has cared for Rex this last week. Please pray that the tests will reveal anything that could be a problem and that this pain would go away. Pray that he would have a peaceful nights rest.
Thank you,
Janelle
He started to have some trouble breathing and keeping his oxygen saturation levels up. They put him back on the ventilator and was given a blood transfusion to help bring his levels back up. They put him back on lasix to help remove excess fluids and the respiratory therapist is also given him breathing treatments and working to release some of the gunk stuck in his lungs.
Dr. Smith ordered a CT scan of his back to see if there is anything else causing this unbearable back pain. He has been experiencing much worse pain since last Sunday night, a few hours after we came to the hospital. A new air comfort mattress arrived and should be set up later this evening. This will hopefully alleviate some of the pain. The doctor also ordered a bunch of cultures to check for the possibility of additional infections. Lots going on today and thankfully Rex was sedated for almost all of it.
I won't know much more until after all of the results come in sometime tomorrow. I suspect they will also do heart biopsy tomorrow to check for rejection. Those are pretty routine and he hasn't had one in two weeks. I do feel so much better since Dr. Smith is back in town. She is very thorough and knows Rex well. Rex had an amazing nurse today. She was very busy tending to Rex's needs and still took the time to explain everything to me and was very tender with Rex. Nursing is a tough job and I so appreciate each one who has cared for Rex this last week. Please pray that the tests will reveal anything that could be a problem and that this pain would go away. Pray that he would have a peaceful nights rest.
Thank you,
Janelle
Sunday, October 4, 2009
Sunday, October 4
Hard to believe that today makes one week since I brought Rex to the ER. Today was a good day for Rex. He was able to breathe on his own from four this morning until five this evening. He remained sedated for the day. At five the doctors came in to check on him and decided to start some support again from the ventilator so that he could get a good rest tonight. Sometime tomorrow morning they will try to extubate.
The boys were here for a few hours today. It was a great relief for me to have them here and allowed me to run to the apartment to do laundry, shower and change. Before they headed home we gathered around Rex and prayed for him. During our prayer he woke up and was able to see the boys before they left. Rex Jr is headed back to California Tuesday and I was glad his dad was able to see him before he left town.
Dr. Smith will be back tomorrow and I am anxious to hear an update from her. So far it appears that the infection is still under control and Rex is holding his own. I do know from the cardiologist that his heart is still good and strong.
Until tomorrow,
Goodnight and much love,
Janelle
The boys were here for a few hours today. It was a great relief for me to have them here and allowed me to run to the apartment to do laundry, shower and change. Before they headed home we gathered around Rex and prayed for him. During our prayer he woke up and was able to see the boys before they left. Rex Jr is headed back to California Tuesday and I was glad his dad was able to see him before he left town.
Dr. Smith will be back tomorrow and I am anxious to hear an update from her. So far it appears that the infection is still under control and Rex is holding his own. I do know from the cardiologist that his heart is still good and strong.
Until tomorrow,
Goodnight and much love,
Janelle
Saturday, October 3, 2009
A little funny in the midst of it all
Okay, things have been tough these last few days. So, I was thinking that we could all use a good chuckle and decided to share a little something that happened here yesterday that caused me to laugh out loud.
They began feeding Rex thru a feeding tube the other day and the nurses needed more food (the liquid kind of course!). Later that day room service arrived knocking at the door. Upon entering I noticed in her hand a food tray with two bottles of liquid nutrition with, and get this, a napkin, fork, knife, and spoon! I couldn't resist and asked, "what, no garnish?"
See, even in the midst of some tough times we still need to laugh. I can't help but think how funny Rex would have found it all!
They began feeding Rex thru a feeding tube the other day and the nurses needed more food (the liquid kind of course!). Later that day room service arrived knocking at the door. Upon entering I noticed in her hand a food tray with two bottles of liquid nutrition with, and get this, a napkin, fork, knife, and spoon! I couldn't resist and asked, "what, no garnish?"
See, even in the midst of some tough times we still need to laugh. I can't help but think how funny Rex would have found it all!
Saturday, October 3
Last night was a little rough going. They were trying to get Rex to a point where he could breathe on his own, but he just wasn't ready. Later this morning he was struggling for air and they needed to bag him to get his saturation levels up again. After a tense few minutes they were able to get him back on the ventilator and all has been well since. They suspect there was probably a small mucus plug blocking the airway. Apparently, this is not uncommon and it is gone now. A culture has been done on the fluid that has been running through the infected areas and we should get results tomorrow. Those will help the doctors to determine the next course of action. As I mentioned earlier this week, we are moving in baby steps.
Rex's family was here until just after noon . They were hoping to be able to see Rex more awake as was the plan yesterday, but he just wasn't ready for that yet. Many other friends came today to show their love and support. Thank you so much!
The docs did back off of the sedation little in the afternoon and as a result Rex was able to be more alert in the evening. This time around he was calm upon awakening. He opened his eyes and was able to communicate a little with hand signals. It has been four days since I have been able to talk with him and get a response and it was great to be able to do so. The boys were also able to see their dad and him see them as well. He has also been taking more breaths on his own for a few hours now while still receiving some assistance from the machine.
We are settling in for the night now. Rex is more sedated for the night so he can get some rest. Please continue to pray for Rex as he heals, our kids as they cope with their dad's condition, and my mom as she takes care of them in our absence. Please also pray for Rex's favorite doctor, Christie Smith as she travels backs to Arizona tomorrow. Thank you all again for your continued support. Hugs to you all!
Goodnight,
Janelle
Rex's family was here until just after noon . They were hoping to be able to see Rex more awake as was the plan yesterday, but he just wasn't ready for that yet. Many other friends came today to show their love and support. Thank you so much!
The docs did back off of the sedation little in the afternoon and as a result Rex was able to be more alert in the evening. This time around he was calm upon awakening. He opened his eyes and was able to communicate a little with hand signals. It has been four days since I have been able to talk with him and get a response and it was great to be able to do so. The boys were also able to see their dad and him see them as well. He has also been taking more breaths on his own for a few hours now while still receiving some assistance from the machine.
We are settling in for the night now. Rex is more sedated for the night so he can get some rest. Please continue to pray for Rex as he heals, our kids as they cope with their dad's condition, and my mom as she takes care of them in our absence. Please also pray for Rex's favorite doctor, Christie Smith as she travels backs to Arizona tomorrow. Thank you all again for your continued support. Hugs to you all!
Goodnight,
Janelle
Friday, October 2, 2009
Friday, October 2
Today has been a good day. Last night they switched sedatives which brought about a much more peaceful rest for Rex. When he would awaken a little it was with less anxiety than the day before. The doctors have started to wean him from the sedatives and the ventilator and are planning to extubate him tomorrow. They also feel that they now have control of the infection. We still have a long road ahead of us as they continue to treat the infection, Rex heals from surgery, and they work to keep him from getting another infection due to his suppressed immune system.
Rex's family visited again today and are hoping to be able to see Rex awake tomorrow. My mom headed back to the Phoenix area to get the kiddos while Mike and Rex Jr. arrived earlier this evening and the three of us are relaxing in Rex's room.
Thank you all for your continued prayers. Our entire family is feeling the comfort and grace that comes only from God.
Good night!
Janelle
Rex's family visited again today and are hoping to be able to see Rex awake tomorrow. My mom headed back to the Phoenix area to get the kiddos while Mike and Rex Jr. arrived earlier this evening and the three of us are relaxing in Rex's room.
Thank you all for your continued prayers. Our entire family is feeling the comfort and grace that comes only from God.
Good night!
Janelle
Thursday, October 1, 2009
Thursday, October 1
The doctor came in this morning to check on Rex and convey Dr. Smith's (she's out of town until Sunday) plan. He will remain sedated and intubated at least through the weekend. To help battle the infection they are flushing his chest cavity with an iodine solution and are pushing antibiotics through his IV. The infectious diseases team came in today to better access the infection and see if there are other better courses of action to take. The doctor reiterated that we are working in baby steps. The good news is his vitals are continuing to look good. The nurses that are caring for him are phenomenal! I can't sing their praises enough. They are not only taking exceptionally great care of him, but they are constantly checking on me and informing me of everything they are doing along the way.
Rex's mom, brothers, sister and nephew drove in from Northern California today. I know it was tough for them to see Rex in the state he is in and even though Rex is unable to communicate with them I am certain he was comforted by their presence. My mom came up yesterday to stay with me, she even stayed the night in the hospital with me (what a trooper!). I am so grateful to her for her love and support. God is so good in sending so many people to support our family during this time. Thank you all for your many prayers and words of encouragement. I am looking forward to the day I can share this all with Rex.
Please pray that Rex would be able to get the rest he needs. There are times he begins to come out of the sedation and wake-up a little. This is never a good thing as he tends to fight against the breathing tube and is very agitated until the sedative does its work again. Pray that the antibiotics would do their job and zap this nasty infection. Please pray for the kids Rex Jr, Mike, Haley and Zach as they work through the different emotions they are dealing with as their dad is ill.
In closing I am left with this one thought - God is BIG!
Rex's mom, brothers, sister and nephew drove in from Northern California today. I know it was tough for them to see Rex in the state he is in and even though Rex is unable to communicate with them I am certain he was comforted by their presence. My mom came up yesterday to stay with me, she even stayed the night in the hospital with me (what a trooper!). I am so grateful to her for her love and support. God is so good in sending so many people to support our family during this time. Thank you all for your many prayers and words of encouragement. I am looking forward to the day I can share this all with Rex.
Please pray that Rex would be able to get the rest he needs. There are times he begins to come out of the sedation and wake-up a little. This is never a good thing as he tends to fight against the breathing tube and is very agitated until the sedative does its work again. Pray that the antibiotics would do their job and zap this nasty infection. Please pray for the kids Rex Jr, Mike, Haley and Zach as they work through the different emotions they are dealing with as their dad is ill.
In closing I am left with this one thought - God is BIG!
Wednesday, September 30, 2009
Wednesday, September 30
Hello all, Janelle here. I have brought the computer with me to the hospital so I can better keep you informed with Rex's progress. As you know, yesterday the doctors needed to reopen his chest and clean out all the infection and treat with antibiotics. The surgery went well and Rex's heart looks great. Since yesterday his vitals have also been great. They are keeping him heavily sedated and intebated and will continue to do so for the next few days until they get a handle on the infection. While the infection is bad it is not the end. There is hope that he can overcome this and that is what we are praying. The doctors are not giving up and neither are we.
After receiving the news following his surgery yesterday I was sitting in the room struggling with all of my emotions. I vacillated between having much hope that Rex would be healed and then becoming fearful that this infection could take him from me. I was tired of crying, I felt that I was giving into fear and began asking God to help me. In His ever perfect timing God placed the following verse on my heart; "Jesus wept." John 11:35. You see our Lord cried and he created us in His image - to have emotion. It is not a sign of wavering faith, but rather a sign of love. We love much therefore we feel much.So, dear family and friends it is okay to cry. Trust in the Lord with all your heart and lean not on your own understanding. Our Father in heaven is very much in control of everything.
Please pray that this infection would leave Rex's body. Pray that he would have peace in the midst of this storm. Pray for the doctors to have wisdom and talent beyond all understanding to best treat Rex. Pray and then trust! Thank you for all of your words of encouragement and for your many prayers. I will try to update often.
Continually trusting our Lord and Savior,
Janelle
After receiving the news following his surgery yesterday I was sitting in the room struggling with all of my emotions. I vacillated between having much hope that Rex would be healed and then becoming fearful that this infection could take him from me. I was tired of crying, I felt that I was giving into fear and began asking God to help me. In His ever perfect timing God placed the following verse on my heart; "Jesus wept." John 11:35. You see our Lord cried and he created us in His image - to have emotion. It is not a sign of wavering faith, but rather a sign of love. We love much therefore we feel much.So, dear family and friends it is okay to cry. Trust in the Lord with all your heart and lean not on your own understanding. Our Father in heaven is very much in control of everything.
Please pray that this infection would leave Rex's body. Pray that he would have peace in the midst of this storm. Pray for the doctors to have wisdom and talent beyond all understanding to best treat Rex. Pray and then trust! Thank you for all of your words of encouragement and for your many prayers. I will try to update often.
Continually trusting our Lord and Savior,
Janelle
Tuesday, September 29, 2009
Update on Rex
Hi everyone,
This is Natalie. I am updating you for Janelle as she is in the ICU with Rex. Rex underwent another surgery today. This time they had to reopen his chest to gain access to his heart. After receiving test results from the fluids drained from his heart they discovered there was a lot more infection that they thought. Within an hour of seeing an x-ray, Dr. Smith who did the actual transplant, found his heart to be inflamed and a massive infection surrounding it. They removed as much of the infection as they could and have him on heavy antibiotics. Dr. Smith stated she was not going to sugar coat the situation. He is in very critical condition and the doctor was not sure if Rex's body would be able to pull through this. The doctors have done everything they could, but it doesn't look good. The infection is in his heart and his blood.
My mom is still with the kids and Carmen is there by her side. The kids know daddy had surgery today and that he is very sick. Please direct your phone calls to me or view the blog for updates. Janelle can not answer all the calls and she is trying to be strong for Rex.
Please pray for this infection to leave his body. Pray for peace and comfort over Rex and the family. Pray for a miracle, because we know God is capable of a divine intervention with this prognosis. Pray that His will be done!!!
In His name,
Natalie
This is Natalie. I am updating you for Janelle as she is in the ICU with Rex. Rex underwent another surgery today. This time they had to reopen his chest to gain access to his heart. After receiving test results from the fluids drained from his heart they discovered there was a lot more infection that they thought. Within an hour of seeing an x-ray, Dr. Smith who did the actual transplant, found his heart to be inflamed and a massive infection surrounding it. They removed as much of the infection as they could and have him on heavy antibiotics. Dr. Smith stated she was not going to sugar coat the situation. He is in very critical condition and the doctor was not sure if Rex's body would be able to pull through this. The doctors have done everything they could, but it doesn't look good. The infection is in his heart and his blood.
My mom is still with the kids and Carmen is there by her side. The kids know daddy had surgery today and that he is very sick. Please direct your phone calls to me or view the blog for updates. Janelle can not answer all the calls and she is trying to be strong for Rex.
Please pray for this infection to leave his body. Pray for peace and comfort over Rex and the family. Pray for a miracle, because we know God is capable of a divine intervention with this prognosis. Pray that His will be done!!!
In His name,
Natalie
Back in the hospital
Last Wednesday evening Rex developed a low grade fever of 99.8 that went away on it's own later that night. We went to clinic later the next day as we do every week and told the doc about it. They weren't too concerned, is incision was looking good and just cautioned us to call if his temp ever reached 100 degrees. The next three nights were the same, he would develop a low grade fever (under 100) and it would return to normal late into the night. He was also having a hard time breathing. Sunday morning Rex woke up and took his temp, it was 100.3 degrees. He took it again 30 minutes later, it was 101.8. We called the coordinator and she told us to head to the ER.
Long story short, Rex has been hospitalized and is currently in the ICU. Sunday night they discovered he had pericardial effusion or excess fluid around the heart. This sometimes happens after heart surgery. That evening he had an operation to remove the excess fluid they also left a bulb type syringe in to continue removing fluid. They also discovered that he had developed an infection in his blood, the cause of the fever. He is on antibiotics for that. Right before surgery Rex began to have very sever pains in his abdomen and now is back. They are doing everything they can to help relieve, but it has been really tough on him.
Please pray that the infection and excess fluid and pain would both go away. Also, pray for wisdom for the doctors and renewed energy. Dr. Smith was with him Sunday evening and has been receiving updates on him at all hours. She and all the other team members are doing an amazing job and I don't know how they do it with so little sleep.
Rex is holding up really well considering all he has been through these last few days. Please pray that God would continue to give him peace in the midst of this storm. I am only home to change and then I am heading back to the hospital. I will update you all when I can.
Thank you for your prayers,
Janelle
Long story short, Rex has been hospitalized and is currently in the ICU. Sunday night they discovered he had pericardial effusion or excess fluid around the heart. This sometimes happens after heart surgery. That evening he had an operation to remove the excess fluid they also left a bulb type syringe in to continue removing fluid. They also discovered that he had developed an infection in his blood, the cause of the fever. He is on antibiotics for that. Right before surgery Rex began to have very sever pains in his abdomen and now is back. They are doing everything they can to help relieve, but it has been really tough on him.
Please pray that the infection and excess fluid and pain would both go away. Also, pray for wisdom for the doctors and renewed energy. Dr. Smith was with him Sunday evening and has been receiving updates on him at all hours. She and all the other team members are doing an amazing job and I don't know how they do it with so little sleep.
Rex is holding up really well considering all he has been through these last few days. Please pray that God would continue to give him peace in the midst of this storm. I am only home to change and then I am heading back to the hospital. I will update you all when I can.
Thank you for your prayers,
Janelle
Saturday, September 12, 2009
Well, it has been a while since my last post and a lot has happened since then. I will try my best to update you all. Last weekend we were blessed to have many visitors. Friday, our good friend Hugo stopped by for the afternoon. Rex and Hugo stayed in the apartment and visited while I was able to run a few errands and get out of the apartment for a while. Later that evening Mike came by and stayed overnight. We played games, watched a really bad movie and just enjoyed spending time with our son. We are so proud of the man he is becoming and he has been a great help to my mom in our absence. He left the next morning and our good friends Matt, Susan and their sons came all the way from San Jose for a visit. It was wonderful spending time with them. It has been ages since I have seen them and with the exception of how much the boys have grown it felt as though no time had passed. Susan and I left for the store a few times to pick up food for dinner while the guys hung out at the apartment. After dinner we played a few games while their boys played video games and watched movies. We all had a great time and we were sad to see them go. Thank you for a wonderful time guys, we love you!
Monday was a holiday so we had a day of rest. No appointments, no visitors, just relaxing. Tuesday kicked off our first official week of appointments. We started the day with a biopsy followed by an x-ray and then cardiac rehabilitation. There we scheduled Rex for cardiac rehab 3 days a week and I found out that I was able to use the hospital's gym during his 90 minute sessions. Wednesday we only had cardiac rehab and Thursday we had blood work and cardiac rehab and clinic. Rex is doing amazing! Each day he uses the treadmill and recumbent bike longer and is using heavier weights or increasing the number of reps! I about killed myself on the elliptical Thursday thinking I was some kind of fitness pro! Eh, what doesn't kill me makes me stronger, right? So far, no rejection episodes and Rex healing like a champ.
My mom brought the kids (Haley and Zach) down for a visit this weekend. We were only expecting Zach so seeing Haley was a wonderful surprise! We had a fabulous weekend just being with each other. My mom and I traveled down memory lane, literally. We purchased a map and searched out the house we lived in over 27 years ago. We couldn't remember a street name or anything and almost gave up a hundred times, but between the two of us we were able to find the street, house and even the school my sister and I attended! The next day mom had scissors in hand and cut both mine and Rex's hair. We are both so grateful for fresh new looks! Later the "girls" headed out to the mall for some serious window shopping therapy while the boys stayed at the apartment for some video game therapy. That evening we all played phase 10 and then said good-bye as the kids needed to get back for school the next day. While Rex and I have enjoyed our time alone it always hard to say good-bye to the kids and I can't wait for the day we get to head back home.
I have to say that Tucson is lovely! Everyone here is friendly and the scenery is gorgeous. Plus, it is a good five degrees cooler than back home! However, it is not home and we miss you all very much. Many thanks to all who are supporting our family in some many ways! Have a wonderful week. More updates to come later....
Monday was a holiday so we had a day of rest. No appointments, no visitors, just relaxing. Tuesday kicked off our first official week of appointments. We started the day with a biopsy followed by an x-ray and then cardiac rehabilitation. There we scheduled Rex for cardiac rehab 3 days a week and I found out that I was able to use the hospital's gym during his 90 minute sessions. Wednesday we only had cardiac rehab and Thursday we had blood work and cardiac rehab and clinic. Rex is doing amazing! Each day he uses the treadmill and recumbent bike longer and is using heavier weights or increasing the number of reps! I about killed myself on the elliptical Thursday thinking I was some kind of fitness pro! Eh, what doesn't kill me makes me stronger, right? So far, no rejection episodes and Rex healing like a champ.
My mom brought the kids (Haley and Zach) down for a visit this weekend. We were only expecting Zach so seeing Haley was a wonderful surprise! We had a fabulous weekend just being with each other. My mom and I traveled down memory lane, literally. We purchased a map and searched out the house we lived in over 27 years ago. We couldn't remember a street name or anything and almost gave up a hundred times, but between the two of us we were able to find the street, house and even the school my sister and I attended! The next day mom had scissors in hand and cut both mine and Rex's hair. We are both so grateful for fresh new looks! Later the "girls" headed out to the mall for some serious window shopping therapy while the boys stayed at the apartment for some video game therapy. That evening we all played phase 10 and then said good-bye as the kids needed to get back for school the next day. While Rex and I have enjoyed our time alone it always hard to say good-bye to the kids and I can't wait for the day we get to head back home.
I have to say that Tucson is lovely! Everyone here is friendly and the scenery is gorgeous. Plus, it is a good five degrees cooler than back home! However, it is not home and we miss you all very much. Many thanks to all who are supporting our family in some many ways! Have a wonderful week. More updates to come later....
Thursday, September 3, 2009
Rex's is home! (At the apartment)
Late Tuesday evening Rex was discharged from the hospital! He was officially released at about 5:30pm, but I had to go and get some of his prescriptions filled prior to picking him up and that took about two hours. We arrived at the apartment pretty late and went to sleep shortly after.
Earlier that same day the nurse came into Rex's room and told him she knew why he had to stay that extra day(Monday)-that God had a purpose for it. Their was a patient who just received news that he would need a heart transplant. Apparently, the patient was shell shocked and had decided he did not want to even consider transplant and was refusing to speak with anyone about it,even his family. The nurse asked the gentleman is he would be willing to speak with someone who had just received a new heart. He agreed. The nurse then asked Rex if he would want to speak with the patient. Rex considered it a privilege and headed towards the patient's room. When he arrived he noticed the same empty stare in the gentleman's eyes that Rex had felt upon receiving similar news three and a half years before. Rex shared that he had received a transplant just two weeks ago. The man asked many questions about the process and pain involved. Rex encouraged him to choose the transplant. He reminded him that he had a wife and child that wanted him around and needed him. He also shared the in and outs of the transplant evaluation process and the importance of doing everything the coordinator required. He then felt lead to pray for the man. He prayed that the gentleman would come to know Christ as his personal savior and for his healing. All of this was done through a translator as the gentleman spoke very little English. He then encouraged the man to stop by is room if he had any other questions or just needed to talk. After, Rex went back to his room to with the intention to pray for the man, particularly for his salvation. Shortly after beginning to pray Rex felt very broken for the Lord. He gave all praise and glory to the Lord. He knew that this conversation was God ordained and directed. Since, the transplant Rex has said several times that he is looking forward to what God's plan is for him. He knows that he was saved for a purpose and he is eager to find what that is. He feels that this was brief glimpse into the plans the Lord has for him and considers it a privilege to serve Him in this capacity. My friends, this is an answer to prayer! Just the night before I had asked you all to pray that Rex would set his heart on things above where Christ is seated at the right hand of God. God is good!
Thank you for your prayers!
Janelle
"In him we were also chosen, having been predestined according to the plan of him who works out everything in conformity with the purpose of his will , in order that we, who were the first to hope in Christ, might be for the praise of his glory." Ephesians 1:11-12
Earlier that same day the nurse came into Rex's room and told him she knew why he had to stay that extra day(Monday)-that God had a purpose for it. Their was a patient who just received news that he would need a heart transplant. Apparently, the patient was shell shocked and had decided he did not want to even consider transplant and was refusing to speak with anyone about it,even his family. The nurse asked the gentleman is he would be willing to speak with someone who had just received a new heart. He agreed. The nurse then asked Rex if he would want to speak with the patient. Rex considered it a privilege and headed towards the patient's room. When he arrived he noticed the same empty stare in the gentleman's eyes that Rex had felt upon receiving similar news three and a half years before. Rex shared that he had received a transplant just two weeks ago. The man asked many questions about the process and pain involved. Rex encouraged him to choose the transplant. He reminded him that he had a wife and child that wanted him around and needed him. He also shared the in and outs of the transplant evaluation process and the importance of doing everything the coordinator required. He then felt lead to pray for the man. He prayed that the gentleman would come to know Christ as his personal savior and for his healing. All of this was done through a translator as the gentleman spoke very little English. He then encouraged the man to stop by is room if he had any other questions or just needed to talk. After, Rex went back to his room to with the intention to pray for the man, particularly for his salvation. Shortly after beginning to pray Rex felt very broken for the Lord. He gave all praise and glory to the Lord. He knew that this conversation was God ordained and directed. Since, the transplant Rex has said several times that he is looking forward to what God's plan is for him. He knows that he was saved for a purpose and he is eager to find what that is. He feels that this was brief glimpse into the plans the Lord has for him and considers it a privilege to serve Him in this capacity. My friends, this is an answer to prayer! Just the night before I had asked you all to pray that Rex would set his heart on things above where Christ is seated at the right hand of God. God is good!
Thank you for your prayers!
Janelle
"In him we were also chosen, having been predestined according to the plan of him who works out everything in conformity with the purpose of his will , in order that we, who were the first to hope in Christ, might be for the praise of his glory." Ephesians 1:11-12
Monday, August 31, 2009
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
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, 2009
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
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
Tuesday, August 25, 2009
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
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 24, 2009
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
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, August 20, 2009
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
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
Wednesday, August 19, 2009
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!
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.
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.
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