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
Tuesday, October 6, 2009
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!
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