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
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