Living in an institution can really bring the characteristics of a society to light. While Hoss was in different hospitals during his first 6 weeks of life, I was living in and around those hospitals, too. As both Hoss and I started to come out of our respective comas (his drug induced, mine emotionally induced), I started questioning different events that were directly affecting our situation - much to the chagrin of some of the medical staff.
The first incident involved the use of morphine on my little guy. Yes, I understand he would have a heck of a headache from the brain hemorrhage, but morphine is not a drug that I have ever appreciated. I have seen it do some nasty things to people and had some loopy moments myself on the one occasion that it was prescribed to me. So I asked for the plan to reduce it in Hoss' medication regime. The standard answer, "that's up to the doctor."
Well then...let's get hold of the doctor. I patiently listened to the doctor's explanation as to why the drug was implemented. Then asked again..."what is the plan to reduce it?"
Slowly the staff realizes I am not going to nod my head up and down at their 'expert' opinion and then they actually set a plan to reduce, then remove the drug from the medications that Hoss is taking. Excellent decision.
Keep in mind that I truly see SickKids hospital as a place that does incredible work with some amazing success stories. The staff are gentle and kind to parents as well as the patients. However, even the staff can become institutionalized in the way they operate. That means they stop thinking in individualized cases and stick to policies and procedure (or protocol is another word they like to use). Where I ran into the most difficulty with this lack of common sense in favour of policy and procedure was at the second, smaller hospital after leaving SickKids.
When an infant is born in hospital and has never been discharged to home, that infant is always placed in the hospital nursery rather than a general paediatric unit. So it was for us when transferred out of SickKids. The second hospital booked us right into their nursery that was set up to hold 6 infants at one time. However, during our two week stay that nursery held up to 10 babies because of sudden admissions from OB. It was tight quarters!
As Hoss began to improve, I found the situation inappropriate for his needs. Because of the many parents, visitors and staff coming and going through the nursery it was difficult for Hoss to concentrate on learning to take a bottle (I had given up on breastfeeding earlier and started expressing the milk due to the lack of privacy). The high number of babies in the nursery also made it nearly impossible for the staff to work with Hoss on his bottle when I was not there. It was much easier for the nurses to just plug him into the machine on his feeding tube. Therefore, I would spend four days at 12 - 14 hours in the nursery in the hospital working with Hoss to improve his feeding skills only to leave for two days at home and he would not have any practice at all.
(BTW this same problem occurs for the elderly that I have generally worked with in my former career. Therapy of any kind simply does not happen with hospital staffing levels. It isn't the nurses to blame, they simply do not have the time to put into therapy exercises. If a senior has a hip replaced, the exercises and walking practice simply do not occur with hospital staff. Which leads to the adage 'people do not get better in the hospital' - at least not where the extra time is needed.)
This gave rise to my approaching the staff about Hoss being moved out of the nursery to a general paediatric room where parents are expected to stay 24hours to provide the extra care. Once again I ran into the policy and procedure wall.
Doctor, with patient look of condescension, "it isn't the general practice to move an infant out of the nursery when they have never been discharged to home before"
Me: "I understand that, however, for Hoss it would beneficial to improving his feeding skills - which is the only thing left to work on before his discharge"
Doctor: "well, general paeds is considered to be more infectious because of the people being admitted from home. Hoss would be vulnerable to several new viruses. Now, if he doesn't progress on his intake at the bottle we may look at sending him home with the feeding tube in place. But, that would be in the future and isn't generally done either."
Me, with patience and polite tone: "Are you telling me that the nursery is less likely to have viruses enter it? This nursery that has 4 babies more than it is supposed to have, therefore 4 families more sharing the room all together. Plus all the visitors that come into the open nursery to visit all 10 babies and, because of the extra babies, the nurses that are currently working on both general paeds and in the nursery - when Hoss would have a private room in general paeds with just his own family visiting. How is this a better set up?"
Doctor, with stunned look replacing look of condescension, "well, I guess that does sound unreasonable when looked at it in that way...but, policy and procedure have been set up this way."
Me, working really hard not to be condescending: "Tell me who to talk to about changing policy and procedure for Hoss' best interests. He needs his mom here around the clock in order to provide his direct care. Unless anyone can guarantee that his occupational therapy will be completed properly even when I am not here."
Doctor, with look of resignation, "I'll see what we can do."
One day later, Hoss was moved to general paediatrics. The room had a pull out bed for me and was private - no roommates. The nurse on duty that day looked at me with an amused smile, "I do not know how you managed this, but I know that alot of moms in the nursery have asked before and have been told it does not happen. After all,..."
I finished her sentence for her, "I know...policy and procedure."
Hoss and I were in the hospital for four more days. We did get discharged home with the feeding because I pulled out the secret weapon that the 'experts' find hard to ignore.
"I am a nurse, after all." Never mind that I am an experienced mom that is confident in the care I provide to my child. Never mind that no one cares more about my son's health than myself and my husband. That would not have convinced the 'experts' to discharge us with what is considered a complex medical concern. However, being a nurse hits the right button and everyone breaths a big sigh of understanding.
After all, as a nurse I totally understand policy and procedure.