October 11, 2013

Well, following Brynn's birthday the nights got harder at home- we were hardly sleeping at all and her pain was getting harder to control. We were spending alot of time on the phone with Calgary and increasing the fentanyl that she was on continuously.  They decided we better come up on tuesday since she needed her port changed anyway and they would switch her from fentanyl to hydro morphine. They would do this for a couple of reasons. One is that there is a shortage of fentanyl right now and they were having a very hard time searching all of Calgary to find enough for us at home. We even had a pharmacist in Lethbridge that was kind enough to drive up Sunday night to Calgary and bring more back for us!  The other reason is that she could be getting resistant to the fentanyl and therefore requiring more and more to get on top the pain. We drove up with the whole family and had one extra bag of fentanyl left.  She was going through it pretty quick and I was prepared to change the IV bag on the way if we ran out but she was surprisingly pretty comfortable and we got to the hospital before her bag ran dry.  Usually changing her port is a pretty quick process but lately with the steroids she is on its getting harder and harder for them to access her.  They took her off her fentanyl and then it took quite a few attempts to access her so her pain was getting pretty bad. They switched her to the hydro morph and they were trying to figure out the dose she needed.  That was one of the hardest days we have ever had.  She was in so much pain the rest of the day and we were trying to catch up to it.  It literally feels like my heart is being ripped out of my chest when I have to watch her suffer and can do nothing but console as she endures.  We got literally no sleep that night and each day since then has slowly got a bit better pain wise but she is definitely not doing well.
It's probably a blessing that when we left on Tuesday to come up here that we assumed we would change meds and be back in a couple days for thanksgiving weekend. Yesterday as we talked with the doctors here at Rotary Flames house we asked about that possibility and was told that we were here to stay now.
Last week when Brynn was having a very hard time mentally I had her write one blessing down at the end of each day.  It was amazing to me how easy it was for her to come up with something even when she was having a hard time smiling.  I have to remind myself of that and follow her example as I'm trying to not be mad that we aren't home with our family for thanksgiving weekend and counting all our blessings together.  I know the Lord is blessing us with little miracles everyday.  The big miracles that I'm asking for may not be the ones I'm receiving but I know he is aware.  I feel very numb right now as we are in survival mode to get through each day.  Yesterday I felt guilty that I hadn't cried yet that day and then I realized that I'm so aware of giving Brynn everything she desires right now. She asks constantly for us to not shed any tears and somehow I'm being blessed to be able to do that for her- in front of her.  However this morning as I was in the shower I couldn't stop crying. It's the one place I can just uncontrollably sob- get it out and then try to get through another day.  I'm realizing how precious our time is and am so grateful to have our family all together up here- even when Reese is driving us crazy!  I feel her slipping away and it's impossible not to want to hold on as tight as I can- even though I know it's probably not the best thing for her.  Sometimes I'm selfish like that.....I just love her way too much<3