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