Monday, October 18, 2010

Course 2, day 3---long day...should we continue

Lisa's various reactions to the meds and the treatment she is receiving kept me up last night as I researched and questioned whether we are doing the right thing.  She is in so much discomfort and basically living her days in a sedated world that I'm having a hard time reconciling this with giving her a good quality of life.  I had made up my mind to ask doc today if they could cut antibody dose back this morning because perhaps it is just too toxic for Lisa.

Why I toyed with how to phrase the question, one of the docs came in this morning a proposed a more structured way to administer the pain drugs with the hope of keeping Lisa more comfortable thru the day.  I agreed as my mind did the tug of war of the benefits of continuing vs giving up.  If we can control her pain then giving her the antibody makes sense because it could give her a longer life, on the flip side, her quality of life is being compromised and so far she has already given up 6 weeks of life to this study.  Also, the effectiveness of the antibody is not known yet.  I have gotten different statistics from different people re: how much time this buys kids.  One person reported his daughter did well with this antibody over one year ago, another person reported that she knew that 6 of the first 12 patients in this study passed away within 18 mos of completing it.

I agreed with the doctor to continue and give it one more shot with the hopes Lisa would sail thru the day.  In my mind I told myself I would not allow them to give her the antibody until she was not sedated and sleeping. We began premeds at 9:30.  After giving her tylenol, 2 antihistamines, anti-anxiety and morphine, Lisa was still wide eyed and agitated.  The nurse honored my decision not to continue with the antibody until we had Lisa sleeping.  We gave her a second dose of morphine...still nothing...except she got a bit more agitated and insisted she wanted to get out of bed and eat.  She tried getting out of bed but could barely stand up with all the meds in her...somehow she managed to grab her box of cocoa puffs from the table next to her bed and start eating.  Really?  The girl is supposed hopped up on pain meds and she wants to eat?  After she finished with this distraction she kept asking for an owl I promised to get her from the gift shop once she went to sleep.  She would close her eyes for 5 minutes and then open them and tell me she had gone to sleep and wanted her owl.  We continued this game until about 1:00 when her regular doctor came to check on her.  We discussed our options and she decided the next best thing to do would be to change Lisa's pain med, to see if we could get a better response than with the morphine.  Lisa was highly agitated at this time and the doctor and I agreed that we before starting up again, we should take a little break and give the drugs a chance to wear off.  I took Lisa her for a walk outside in her wheelchair and we went to the gift shop to get the owl.  I was certain the fresh air and sunshine would  knock her out.  Hahahahahahahahahahahahahahaha.  Oh, she closed her eyes once or twice, but this girl is stubborn.  Even after she got the owl, she still wasn't going to sleep.

Once we returned to the room it was close to 2:00.  Had I let them start the antibody on time today we would be finishing up at this point.   I wonder what I had gained with the approach I took....for all the agitation and frustration we went thru we could have just put her on the antibody and dealt with the same amount of screaming and been done with the treatment!  How was I to know that Lisa was going to be so sleep resistant??

We had to start all the drugs over.  We were certain with all the screaming she had done and another round of drugs, Lisa would just collapse in exhaustion.  We got all the drugs going again and at 3:00 when we were ready to run the antibody, Lisa was still awake.  Admitting defeat I told the nurse to just go ahead and run it, at this point could it get any worse?  Sooner or later Lisa would have to tire out, Lord knows I was exhausted.  It took the drugs, a bit of force, and a bit of being the "No" mom repeating over and over again "No, you can't get out of bed" "No, you can't take your tubes out" "No, you can't go to McDonald", "No, you can't go for a walk"  before Lisa finally fell asleep at 4:15.  Her body was already so agitated and tired from the rest of the morning that when the antibody started running her stats barely changed and we didn't notice a big change in attitude, cause really how much more cranky can one get?

She slept until about 7:00, but every time a nurse came in to take her vitals she fussed and screamed.  She has been resting most of the evening but is easily agitated.  We have one more day to get her thru this course and then hopefully we will be cleared to come home this Friday.  I hate wishing days to go by quickly especially knowing our days are numbered, but I honestly cannot wait for tomorrow night to be over.

I pray and pray that tomorrow will be an easy day and that once all the pain meds where off Lisa feels good and can go back to walking and eating and smiling and not have to rebuild up her strength like after course 1.

1 comment:

Anonymous said...

I wish I was there to give you both a big hug!!! Hoping that the rest of the evening was more peaceful.

The Kreagers