Tuesday 09/22/09
Happy Fall!
After experiencing "blog withdrawal" here's the update on Mike:(these are from e-mails that Bette sent me)

Friday and Saturday "mom report":
Mike was pretty "with it" this AM. Tom had gotten TED hose for Mike's legs. The swelling looks much better. PT (physical therapy) has been here to work Mike's hands and fingers.. His left hand was pretty tender so he got a little more pain meds so they could be a little more aggressive. Tom also thought maybe the inner cannula on the trach tube may be a little long and, consequently, irritating the trachea and causing the terrible coughing spells. Dr. Cochran said she wold put a shorter one in. Also, they are going to use Presdex(sp?) to keep him relaxed after surgery.
The surgery to replace the grafts on his shoulders with auto-graft skin wnt well. There is only minimal dressings on them so it is imperative that he stay very still for 2-4 days. I hope we can keep himquiet for that long.
Saturday: Mike seems pretty calm. They have vaseline soaked gauze on his face to help debride some of the scabs and stuff from his face. Luke said he planned to keep it up most of the day to see if he can get his face cleaned up. They are using antibiotic ointment also.
more later, mom

PM report: Mike spent a pretty uneventful day. Has been on T-piece all day with O2 sats in the high 90's. He sometimes forgets to keep his hands still so Luke put loose restraints on them so he can't raise them too high. He's doing well today.


Sunday /9/20/09: (mom report)
Report is that Mike spent a very restless night. Maybe it's because he had such a long nap in the afternoon. He wasn't too bad when I got here a little after 9am. Kristy is his nurse. He trusts her and likes her, but she has a nurse intern with her and she agitates Mike. She couldn't make the feeding tube work when she went to give him some meds and she pulled on he tube. I don't think she was aware that she did it.. Anyway, that elicited a strong SOB!!! No mistaking that. After that, he got a wild look in his eyes every time she came near him. He wanted someone else to help him. I got Jesse to help a few times when Kristy was busy. One time he got so agitated he coughed the trach tube loose. His O2 sats went way down and he panicked even though he had 3 nurses right there.
He still gets frustrated when I can't read his lips. Sometimes he forgets where he is and what's going on. I plan to go to Idaho tonight to see if I can get a few things organized. I hope he gets someone he trusts to take care of him tomorrow.
He has been on the T-peice all day, and they were talking of getting him up in a chair this afternoon. I'm not happy about his eyes. At first, only the right eye (lower lid) was pulling down. Now, both lower eyelids have pulled down. Kristy said that usually the "pulldown" is one of the last things they worry about. They are still working to get his face cleared up. I guess it's the up and down thing. I wish there were some more ups. And that is non the UPS shipping I'm talking about.
It will be good to get a good medical report when JaCee gets back. I miss that!
take care,
Bette, AKA MOM

Tuesday:
And so, with "no pressure" to give a "good medical report", we go...
I talked with Karen early this morning for the night report on how Michael is doing. She said he's been on the T-piece for more than two days. The plan is to downsize the trach from an 8 to a 6 (the size of the radius of the tube) and then place a Passymuir valve there. That is a valve that can be covered up to allow Mike to breathe normally but still allow suction access and be there in case he gets in trouble and needs to have extra help breathing. The back up safety valve, as it were. The arterial line was discontinued last week sometime and they also discontinued the Central line to a Picc line. The translation for that is that a Picc line is more for long term venous access and is less likely to cause infection. It usually is inserted in one of the arms and there is a long tube that travels up and into the superior vena cava that goes into the heart and circulation system.
Karen said Mike was awake and interactive last night and she can generally get the "gist" of what he's saying. They are weaning his fentanyl (IV pain med) and using oxycodone every 3 to 3 1/2 hours with good results. He has been getting pretty good at repositioning himself. His labs look good. The white blood count is great at 7.4 and his sodium is finally not bad at 140. I was happy to hear his kidney function tests; BUN 13, creatinine 1.23. Much better than before.
The plan today is to get speech therapy to come in to do a swallow evaluation. Good swallowing equals weaning of the feeding tube and moving towards Mike's first drink of water and then food. It has been a very long time since he had a drink, and I am not talking Beer here! We can barely go a few hours without anything to drink, taking it for granted. Just think of how good it will feel for Mike to take his first sip of water. I am very excited to hear how it goes.

You may be wondering where I was that I couldn't blog on Mike. Randy and I took Willow (Mike's niece) to Mexico up in the mountains to be with the Indians there to pray and celebrate her graduation from a ceremony for children and the harvest/fall time. We went without food or water for what seemed eternity and it really reminded me of what Mike must be going through. At least we knew that, at the end of the ceremony, we could drink water and eat, but it was small compared to what Mike has endured. We prayed for Mike and the family there. We realize that we take so many things for granted here and it was a very humbling and life changing experience. Thank you all for your patience while we were away. It was one of the ways I know to help Mike, through prayer. It is good to be back where there is running water, showers, a bed to sleep in, showers, and a house that has a door on it and real windows...did I mention showers? We are thankful every day for our lives and that Mike is alive. (sorry for getting a bit sappy there)

We are now up to speed. Let the blogging continue!

More later,
and so we go
JaCee