MRP

As of today the biopsy results aren't back. The emotions are running high as this surgery has thrown us a huge curveball with the amount of pain Kourtney has been having. It came to a point last week when we had to start wrapping our heads around the idea that there may have to be another operation if this bewildering pain continued. Although the preliminary results of the biopsy showed no cancer, Dr. C. was still not convinced.  The results will determine the next phase. So many things are running through my brain. Finally, on Sunday our family doctor returned from vacation and took charge of the situation and became the MRP (Most Responsible Person - a medical term used in the hospital when a patient is admitted in hospital - usually a doctor who orders medications, procedures and consults.

It may seem like I am over involved; a micromanager or enabler. To be honest since we have had our funding increased I have done my best to back off. I haven't done a dressing change in months!  According to Kourtney I am not fast enough. Kourtney also doesn't like it when I get her dressed.  She often tells me, "How do you dress yourself when you can't dress me?"  To be honest it doesn't bother me. I am happy to back off. I think it's healthy and an important transition to being an adult. However, these last few months of arranging, organizing doctors, and figuring out the right pain meds it may not seem like I have backed off. Just to be clear I don't need to be needed. 

Last week we adjusted Kourtney's meds and did a dressing change with sedation.  I thought the pain was under control. I decided to work on Friday and my 12 hour shift went on swimmingly, without any word from Kourtney about her pain. I felt relieved. It turned out not all was well. Kourtney's pain wasn't settling AND I was told that Kourtney's pain medication was running low. So why was I just finding about this now? Friday night. When doctors aren't on call and turn off their pagers and cell phones for the weekend. (This medication can not be called in by a doctor. The physician has to hand write it out on a triplicate form, can't be faxed etc). After a gentle tongue lashing to her MRP of the day, Todd,  I could not dwell on it but moved to Plan B.

After several attempts at contacting doctors, I banked on the fact that Dr. C., being a workaholic, would still have his pager on.  Of course he was happy to help, however, it meant "TODD" had to drive all the way to Vancouver to pick up a prescription. Once again it just seemed so unfair.  That same day  I received a "kick to the stomach" that I didn't see coming. I can't and won't expand on the details however I have had to give it over to God. A difficult task as I have been wounded deeply. Although Todd dropped the ball the day before his redeeming qualities overshadowed a very minor situation. He has the ability to give me perspective, keep me grounded and loves me and our family unconditionally.  Despite our best efforts Kouryney's  pain continued.

By Sunday afternoon Kourtney was adamant she needed to go to the hospital to get some IV pain medication. I was in full agreement as I felt I was in over my head we were giving an insane amount of medication with no benefit. I felt helpless. In a last ditch effort I tried to get a hold of our family doctor on a Sunday afternoon. I don't take for granted that these doctors are so willing to help. But taking Kourtney into the hospital brings another set of problems. Doctors who don't know Kourtney's history have a difficult time wrapping their heads around EB nevertheless her 20 years of having it. Kourtneys  doctors don't want her admitted for because she is so complex. The long and the short was DR K became her MRP.  He acknowledged that this had been an erroneous weight on my shoulders and he would take over. He changed a bit of this and added a little it of that, called Dr C and voila the pain went away in an hour. No word of a lie. One little pill a strong antinflammatory changed her pain instantly.  It's been 48 hours and Kourtney is back to herself.

Now we wait......for the results. Thankfully Kourtney can leave the house and be more distracted.

So so thankful for the medical people in Kourtney's life. It certainly takes the pressure off not being her MRP but just her MOM.