Thursday, September 5, 2013

Navigating

Last week was very different than we anticipated.

Monday was a tough day for managing pain, but we received the TENS unit that had been ordered and tried it out that afternoon.  The difference it made was amazing.  Trent felt good, and he even went to church that night.  He was just starting to feel some pain when we were coming home that evening.  I gave him his meds, and I thought he'd be able to get a nice night's sleep.  That was not the case. 

Shortly after he took the medications, he told me that he felt 'blah' and that his legs felt a little crampy.  He told me to go on to bed and said he'd join me in just a little while after he took a bath to ease his legs.  What actually happened is that he fought all night long with horrible pain, and he didn't wake me.  I heard him around 5 a.m. and got up to see what was happening.  He was literally beside himself with pain.  I asked him a few questions and watched him for a short time.  I decided we needed help, and I told him that I was taking him to the ER -- the 2nd trip in just a couple of days.

Even after they gave him medications there, it still took his body a while to settle down.  I prepared myself for the doctor to say that the pain had settled and they were sending him home -- I was ready to protest that.  Fortunately, I did not have to do that.  This doctor was very careful in his handling of the matter and took the initiative to contact both the oncologist's office and the palliative care doctor's office.  His decision was to keep Trent to make sure we did not have a repeat episode once we left the hospital.  I was thankful for that.

Trent's palliative doctor, Dr. Illig, was in his room within an hour of him being admitted.  She has been so concerned and compassionate.  I feel incredibly blessed by the doctors that we have been assigned.   Dr. Illig suggested that Trent was experiencing an opoid toxicity from his pain medicine and / or he reacted badly to the steriod that he had been on.  Without those two meds, he was feeling much better.  It was suggested to us that we talk with the department in oncology that provides the home-care nurses.  This department of nurses is licensed to provide 24-hour accessibility and they can call the doctors directly as well as bring medications to our home instead of us having to made middle-of-the-night ER visits because the pain is uncontrolled.  As much as I hope we don't have any more incidences of uncontrolled pain, I know it is a possibility.  It is something to consider.

We were in the hospital until Thursday morning -- we got out just in time to make his appointment with his oncologist.  This was the appointment to get his latest scan results.  The scan showed that there had been some additional growth -- nothing alarming, but growth nonetheless.   Trent is not making any changes at this point.  Dr. Kubiak discussed again the fact that there is a 'window of opportunity' for choosing chemo and that, once that window closes, it does not open again.  She shared with us her thoughts on that 'window'.  We meet with her again in 2 more weeks.  At that same time, we will meet with Dr. Illig again, and the social worker wants to visit with us again, as well.

We are still struggling with pain control.  Things continue the way they have been -- every time we think we have a plan, things change.  I continue to pray for wisdom as I help Trent make decisions and try to find solutions.  Yesterday was a rough day with pain again, but we were eventually able to get it under control.  However, last night, Trent was able to sleep 6 hours un-interrupted -- Truly a blessing beyond what words can express!

We have been offered the opportunity to place the kids in the Christian school this year.  Trent has decided that is what we are doing.  Big changes for everyone.  Two of the three are excited.  The third one wants to be excited, but he's not sure about the changes.  He'll come around.  The kids started school today, and I am eager to hear about their days.

Right now, I'm going to take a few minutes to just be.  No pressures for the moment.  I think I'll make a cup of coffee and have my quiet time and relish the moments of quiet.

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