Sorry it has been so long since I last updated. Life has caught up with me so between being frustrated on what is happening here and family life at home it has been almost too much to sit and type something. Today I am feeling a little less stressed, enough to write something.
Emma has been having a hard time still sleeping at night and still more issues with pain. In the past 3 days, she slept a few hours 1 of the nights and that is because they gave her Gravol to sleep and help her nausea. The team of Doctors said Tuesday that they were under the impression that we wanted to leave ASAP and not wait for things to get done...not sure WHO gave them that idea because I don't want Emma leaving until they manage her pain and we know the abscess is going away and the meds are working. They then said, Yes we would prefer she not leave until she is better and we have a concrete plan with the treatment being successful. Ok...GOOD. However, her pain is still a 9 out of 10 without any meds and a 7 with meds so not enough relief in my opinion. This has been 3 weeks of pain and no long lasting relief. She had some success with IV pain medication but they are shying away from that again. If she is dependent on her IV for pain relief they will not let her go home. I can understand that. However the Toradol they are giving her that provides the most pain relief, she can't take home with her. And so that leaves Emma in pain still. Hence y BIG frustration! Up until last night the nurses have been really good. Last night and today her nurses are not giving her the medication she needs in the right amounts and at the right times. We have relayed the information to the doctor and they will be following up on that. They said she has standing orders to get medication at certain intervals and she should be getting them.
Emma is scheduled for her Ultrasound this afternoon. They will be comparing this one to the one done a week ago to see if there has been any changes. If there is significant evidence that it is getting smaller AND her pain relief is managed well, then they will discharge her most likely. She will continue on the IV antibiotics done by the Visiting Nurses once daily and have a follow up in another week. If it is bigger or the same and her pain is still high, they will have Nephrology (Kidney Doctors) come in to discuss options of surgery to completely remove it or putting a needle in to drain the infection.
This week has seen the Paediatric Floor she is on fill up so there is also a push to get the "less urgent" patients out. This doesn't sit well with me or other parents I have talked to on the floor. That is what we get when we have a Universal Healthcare system in Canada that is a bit broken and overcrowding in the hospitals is an everyday occurrence. It is typical for an adult to wait in the ER for 6-8 hours before being seen by a doctor. It is also typical for an adult to have to spend several days in the ER in a bed there before being sent up to a room because they don't have the admitting beds available in the hospital. So there is a trade off in care and payment. We don't have to pay for being here however we have lengthened time for certain procedures and things move much slower.
Emma's spirits have been quite low that past 2 days. The whole ordeal for her has become overwhelming. I think she is just "done" being here but can't leave because she is not better. We are praying for her recovery to be quick so she can get home to her own bed!
The doctors just came in as I was typing and they are not happy with what has been happening for her pain management and what happened overnight should not be happening, even on a busy floor. They are moving toward a resolution today we should have more information to make a good plan...FINGERS CROSSED! I will be monitoring her pain medications myself to ensure she is getting what they have ordered when they are supposed to do it. The doctor made it clear that he wants to see a major change in her abscess and her pain reduced before he allows her to go home, full floor or not.
I have been thinking a lot about being a mother, having a sick child and the trials we go through in our lives. A friend I talked to on Tuesday reminded me that we all have to learn the same lessons. We just experience them differently. This trial has helped to strengthen my relationship with Emma and has forced us to spend a huge amount of time together...not so bad! Still pondering the lessons and growth our family has had to go through in the past 2 years with my Mom and her Cancer, then my marriage, then my job loss and now Emma's health. Just a lot to deal with. However I know that through the last 2 years I have been supported and strengthened by those around me and I am a stronger woman going through this than I was before. I am a "Tough Broad"! LOL!! I wake up and get out of bed, putting one foot in front of the other...Keep Moving! (That is what My Mom would have said..."KEEP MOVING!")
I will update after we get the results from her test this afternoon. I am grateful for the continued support and love we have been shown!