My Husband and Cholangiocarcinoma

Want a little bit of a chuckle? Before they would release Tom today, they were setting up home health care to have someone come in daily and flush the drain tube and change the bandage….now is a bit late to be concerned about that don’t ya think? Who do they think has been taking care of it for the past 10 months? Maybe a little elf or a munchkin?

His doc did not come in to see him this am cause they (the hospital?) was waiting on home health (so the nurses said) and when his doc came in at 12:30 his first words were “Please do not throw anything at me”! His doc does not know who ordered home health care because he did not.

Now they want him to come in every 2 weeks to get a sample of the bile and will watch for infection. If it comes back they will put in a PIC line so that he can get IV Antibotic’s at home rather than to have to be in the hospital for 5 days. FINALLY they are using their heads! And they are also going to get him on a schedule for tube exchanges, something like every 4 – 5 weeks and the tube exchanges will be automatic. This is something I suggested and finally they are listening to me! Go figure eh?

Well, on that note, I will just say once again, “THANK YOU ALL for all your support and prayers”. I can’t tell you how much this forum has helped me out in the past 10 months.

Go with God and KEEP KICKIN’ THAT cancer

Margaret and Tom

Tom will be released from the hospital today! He’s 110 percent better! And get this, his alk phosphate level is down to 500! YES, 500, it has not been that low in over 2 years! The ‘on call’ doc was so concerned about his alk phosphate level on Saturday and I asked her it it was 900 and she said ‘yes’ so I told her that 900 was actually GREAT for him since it had been over 1500. Then the blood work on Sunday was 500! So, don’t know why it went down but that is awesome news! His onc is going to be amazed. For whatever reason, Tom appears to be great at dodging those bullets!

He’s crashed no less than 5 times during his 4 days in the hospital…can’t figure out why they won’t listen to the patient and his main caregiver about how much insulin he really needs! After the 4th time of him crashing then they finally started listening to me. Before I left last night, my final words were “Please do NOT give him insulin tonight!”

He had a tube exchange yesterday at 5:30 pm because Dr. Dempsey was going to be gone today and that went well however Tom was not a happy camper at having to stay overnight, all he wants to do is come home and I can’t say that I blame him, however, to be on the safe side, they wanted him to have a few more rounds of the antibotic and I understand why they wanted him to stay.

And it’s amazing what 7 1/2 hours of sleep can do to renew this caregiver. (I stayed at the hospital with him and sleeping on a cot just didn’t cut it for me and not having my bipap with me didn’t help either)

Go with God and KEEP KICKIN’ THAT cancer.

Cyber Hugs and Thanks for your prayers!
Margaret