I have mentioned my Grandma before, but today she needs to be brought up again. I'm pretty sure no one has ever referred to me as timid or soft spoken. My grandma was a nurse and ran the OR. She got things done and wasn't afraid to stand up to anyone. When I stand up for what I believe in and make some noise, my family comments on how much I'm like my Grandma. I'm pretty sure whatever DNA was passed to me from her has been very useful in this entire experience. Today was no different, I didn't make any new friends though.
I'll regress a little....
I left the hospital yesterday on pass without seeing GI. The nurse called and found out they were very busy and weren't going to make it up to see me. I returned at my usual time and was told by the nurse that Hope's PICC line had been cancelled and moved to Thursday. I was confused, it was scheduled for Thursday as far as I knew anyway.
Hope and I had a terrible night. Her food was given to her straight from the fridge and it was too hard on her stomach being that cold. She began throwing up around 11pm and had to be bathed and changed in the night. Her feeds were stopped for awhile and then dropped back to 20ml an hour. We had been at 30ml previously.
I woke up to the day nurse doing her assessment and was still half asleep. Again I was told that Hope's PICC had been cancelled and would now be on Thursday. I said, "I thought it was on Thursday?" The nurse informed me that they had tried to move it and anesthesia had come to see me in the afternoon on Tuesday. I was out on a pass with Hope and as a result, her new date was changed back to her original date. Very confusing, I know.
While still in bed, under the covers and half asleep the anesthetist walked in. He was pretty rude from the start and wanted to know why I hadn't been there the day before. He asked a bunch of valid questions about Hope, anesthetists have a very serious role in surgery and are quite thorough. I obviously appreciate this a great deal as a parent and will answer any question they ask! I suddenly remembered that the cardiologist had told me to make sure I requested a cardiac anesthetist for Hope. He felt that with her reaction in Calgary after the MRI and her heart condition, that this was necessary.
I committed a horrible offence, not knowing that I would offend. I simply said, "We were told to be sure we had a cardiac anesthetist for Hope's surgeries." This was apparently the most insulting thing this doctor had ever heard. He clearly felt that I had ripped out his heart and done some break dancing on top of it. I listened in shock as he rudely tore a strip off of me and informed me why he was amazing and told me to tell whoever felt otherwise to call him directly. Then he stormed out of Hope's room.
I called Shawn to tell him about this less than awesome experience and planned to address it with our cardiologist when I saw him. The nurse had already gone to the charge nurse to complain about the outburst and complete disrespect. She congratulated me on being so calm, but I had to ask her to hold those kind words because I wasn't done yet. The anesthetist went from our room to the cardiologist and tore a strip off him. The cardiologist came to see me right away and apologized for the fact that I had been caught up in the middle of so much drama. I made it very clear that this doctor who was clearly angry and egotistical, would not be touching Hope, EVER. I asked who qualified for a cardiac anesthetist if having 1/2 a heart didn't qualify?
Before you get bored with all the details, we will now have a cardiac anesthetist with Hope during her PICC line and hernia surgery. I was exhausted before the day had truly begun.
GI came to consult on Hope again this morning and is going to make some changes to her diuretics. They have also decided to give her the protein infusion for 3 days in a row. We're hoping this will have a powerful impact on the fluid in her abdomen and give the best chance at a quick recover from the hernia surgery. Cardiology is not convinced that these changes will have a large impact, but are willing to give it a shot. Please pray that this truly helps and we're in the best shape possible before the OR.
Hope has been running a bit of a low grade fever tonight. One dose of Tylenol has taken it down, but they'll watch her closely tonight to be sure she's safe to go under anesthetic. They'll stop Hope's feeds at 2am tomorrow morning and begin running clear fluid until 4am. The amazing doctor that has gotten an IV on Hope in the past, is going to come at 7am to start one before the surgery. I believe this is for the anesthetist to use while putting her to sleep. She will be put under a general anesthetic for the PICC line procedure. Please pray that the IV start will be a success and that the PICC line will be uneventful.
Hope is going to be intubated for this procedure as well. They have an ICU bed ready for her, just in case she has any complications. Everyone involved in her care is taking full precautions with her and we are truly thankful for that.
I think our days of passes have officially come to an end. It was a blessing while we had them and we were thankful for that time as a family. We'll be back to full days in the hospital with no clear end in sight. Some days that's easier, I don't get my hopes up and I think about home less. Having a pass is a much nicer way to visit with family. We had Shawn's parents up on the weekend and were able to spend time with them at the RMH instead of in our cramped hospital room. My sister stopped in for a day on her way back to BC, and some friends have popped in when in the area. We are truly blessed by our friends and could not do this without the support of others.
Thank you for covering our family in prayer and specifically Hope. Tomorrow she will go in for a minor procedure, but central lines have caused clots in the past. Intubations have turned out poorly in the past for her. ICU beds that are reserved as a precaution have been used in the past. Hope has taught us to never believe something will be simple, and to put 100% of our trust in a God that is capable of handling complicated.