Monday, February 1, 2010

One week - still here, but better

Mike is still in the hospital but what a difference a week can make. He is sitting in a chair looking out the window as I typed this. One week ago, he couldn't sit up without breathing hard. He had absolutely no energy. I think I have some blame in this hospital stay this time. I knew that Mike wasn't getting enough nutrition after that last round of chemo, but things seemed to be manageable. Then all of a sudden things just picked up steam like a ball rolling down a hill. Mike was also a little stubborn in this situation, but I am so thankful that we got here.

Mike is up to 60 ml per hour on the food pump. They want him to be at 70, so we are almost there. It is just taking Mike's stomach awhile to get used to eating 24 hours a day. We are also having some issues with the digestive tract and some fluid retention. His blood work is also slowly creeping down. We need to keep an eye on that as well, but THIS day is a good day.

Elizabeth and I continue to bounce between hospital and school. It got hard this weekend when she needed to be at home working on a huge project that is due in two weeks and I wanted to be here. (She needed help learning how to scan and incorporate graphics into her project). But for the most part, I think we did ok. Dad helped by spending time up here with Mike. I hate leaving him alone because you never know when the doctors are going to pop by and come up with something. For instance, on Friday I was up at school when the doctor came by. They had concerns about Mike not tolerating the increase of food. So the GI doctor (remember the one that said Mike should be on hospice back in September), the admitting doctor, and then another doctor felt Mike should get a GJtube. Basically, it is extending the feeding tube that Mike has into his lower intestines. Mike told the doctor that he wants to give the pump feeding more time. Next thing we know, nurses are here ready to wheel Mike down for the procedure. We told them no after a discussion. I think everyone wanted to get something done before the weekend if truth be told. The best thing is that it looks like at this point that was the right decision. Mike has managed to increase from 35 ml per hour to 60 ml per hour.
It is funny how much we have learned on this journey. For us, we are learning how to pray, listen and wait. Sometimes people/doctors want us to make these snap decisions, but we have learned to say wait, no, or we are still trying to decide our options. We have learned that our medical information is OUR information. That means that I can say let me see that blood work. I want a copy of that report. What leads you to make that decision. I have read about this treatment, is this an option for us? Why? I have also learned that you gain tons of information from other resources like nurses, techs, patients. It is a good thing to engage people in elevators, waiting rooms, etc. You never know what you will learn that might be helpful.
I will post as soon as we know if we are going home today. I don't want to be sent home without addressing a few issues like the fluid retention. But we have everything ready to go as far as Home Health for the feeding pump. I am hopeful...
Prayer needs:
Mike to gain weight and strength
Mike's back pain
The fluid retention and the digestive tract issue
Time management - there is so much going on this week with Elizabeth and her activities
VA - of course, we get a letter that Mike needs to go to the VA in downtown Dallas for an appointment this week. I called to let them know he is in the hospital but they won't discuss with me because we don't have a release of authorization on file. How we missed them, I don't know. Everyone else has it for us. I faxed one over, so hopefully I can get this settled. Minor issue in the scheme of things though!
Sleep for everyone
Praise:
Dad for spending time with Mike in the hospital so I could at home
Mom for doing laundry for me
Meals this weekend and Baskin Robbins Ice cream cake in the hospital YUM! (even Mike ate some)
Lisa Tuttle is on the way to the hospital to visit with us from Florida!
Thank you to Millers, Grays, Irwins, and Webbers

5 comments:

Anonymous said...

SO glad to hear about the increase in fluids!! As far as the intake...not the retention :):) Love, Gini

Anonymous said...

Thanks for the update. I totally agree that we as humans need to "Be still" ....You both are such an inspiration to us and so many. You ALL will be in our daily prayers! The Simmons

Anonymous said...

Glad to hear Mike is doing better! Hopefully you'll get to go home soon.

We all keep you all in our prayers!
God Bless,
Cynthia

lynn / kev said...

Good lessons learned and thank you for sharing them. You're so right about the doctors, they work for YOU, you are the patient, the "customer" and you have the right to say yes, no, or wait. God is leading and sometimes His schedule is different than ours or theirs! :) We're praying, as always. Love, Lynnette

Anonymous said...

I made it back to Florida. It was SO good to see you all. I miss you very much.

Still praying, still hoping, still believing...

-Lisa