Saturday, August 28, 2010
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.
Sunday, August 22, 2010
The next 24hour wait is very much a blur in my mind. I know I ate, because my dad and his wife came and brought food to us. I know I walked around the hospital, because I remember feeling great resentment about how cheery they had made the environment (I wanted my surroundings to be just as black as I felt). I know my husband was at my side the entire time, because I remember holding his hand almost constantly. What I don't remember is talking, or thinking, or acknowledging anything. Both my husband and I were living in a fog.
For as much as we, as parents, were being drawn through the 'valley of death', our little Duck was having a hard time, too. In some ways it was harder for her because she was not at the hospital with us. She was seperated from her entire family and had little information other than her new baby brother was very sick. We were trying to protect her from the worst, but she is far more intelligent than we were giving her credit for being - she already had started praying for a miracle.
We finally reached the next evening and the neonatologist returned to our room, bringing the social worker and the duty nurse with him. This, to me, was a sign that he wanted extra support for the negative news he was about to deliver. He drew a picture of a brain to show us what had been discovered from the tests. Our son had suffered a brain bleed in the left ventricle of his brain. The blood that had collected in the ventricle had caused the seizures and some brain damage could be seen on the wall of the ventricle.
He raised his head to look at us and said, "this is far better news than a diagnosis of stroke".
What? This is good news?
The doctor continued to explain that the bleed had stopped on it's own and the blood would also reabsorb on it's own - our bodies are made to work that way. The damage was a small area on the wall of the ventricle that may affect our boy's right sided motor skills and his vision (they know this because the brain is mapped out very well). However, because he is just newborn, there may not be any noticeable affect. As he grows and learns to grab and walk and use his right side, he may simply adapt to any weaknesses and develop normally.
Yes...this was much better news than a stroke, which would have damaged a much larger portion of his brain. The doctor smiled at us and said, "I'm glad my initial assessment was wrong."
At this point, my nurse brain snapped back on - I started asking about care plans, future therapy, reductions in medications, etc. It didn't take me long to move past the dark world that I had been living in and move to a place of hope again.
It took a little longer to reconcile my feelings toward the Lord. The prayer of thanks was immediate, but I didn't have the answer to my 'why?' question. In the end, I have concluded that we are 'vessels of clay' and He will 'have mercy on whom He will have mercy.' I serve a soveriegn God and although I don't understand the purpose in this event, I simply accept that He had a purpose - and I may never know what it was.
For my thoughts are not your thoughts, neither are your ways my ways, saith the Lord. For as the heavens are higher than the earth, so are my ways higher than your ways, and my thoughts than you thoughts. Isaiah 55:8&9
To make the final part of the story short, our little man spent three weeks in SickKids before being transferred back to the first NICU where his seizures started. He stayed in that hospital for another two weeks and then CAME HOME! He came home with a feeding tube in place, but he was bright eyed and active. That activity has shown that his right arm and leg are strong and moving just as much as his left side!
I will praise thee; for I am fearfully and wonderfully made: marvellous are thy works; and that my soul knoweth right well. Psalm 139:14
I will expound on some of the details that I've skipped over here (including a commentary about why I still don't support socialized medicine). However, with a newborn boy keeping me busy at home - the posts may be slow in getting out.
And the best babysitter I could ever have:
Thursday, August 12, 2010
I woke up at 1:30 a.m. in labour and woke the rest of my family by 2:30 a.m. to get ready to go to the hospital. After phoning the OB nurse at that same time, my water broke and we quickly headed out the door. Only a short labour period past and my son was born at 3:57 a.m. - that's only 2 1/2 hours from beginning to end. Some women with long labours may be impressed, even jealous at this expediency. Don't be, it was not a good thing.
Our handsome boy weighed in at 9lbs and 6 1/2 oz, 22 inches long. He was very bruised about his head because of the speed he came through the birth canal. Immediately, the medical staff noted that his blood sugar was too low and started the process to raise it. Their efforts did not improve the situation and within 5 hours of delivery we were transferred from our small town hospital to a more technologically advanced Neonatal Intensive Care Unit about an hour south of us. Little did we know the events that were to come.
Because my boy was in the care of a NICU with 24hour monitors and high ratio of staff to patient it was noted that he started to have seizures. In fact, the seizures became continuous to the point that he would stop breathing and require resuscitation. This is only day two of his life. Before this day was over, my son was intubated onto a full time respirator and we were being transferred to The Hospital for Sick Children in Toronto with no idea why the seizures were happening or if they could get them under control. More seriously, would our son ever breath on his own again. We had only held him for a short time after his birth and I had not been able to nurse him yet.
When we arrived at SickKids hospital, we were presented with the some of the initial test results and physical assessments. They did not know why the seizures were occurring. They did not know why this baby boy would not breath on his own. They only knew that we should be prepared for the possibility of having to say 'goodbye' to our boy after only saying 'hello' a few short hours before.
This isn't how it is supposed to happen. Not only did I start sending desperate cries to God, I had so many questions as to 'why' He would allow this to happen to my family. While I am questioning Him, I'm also trying to answer my 10 year old daughter's questions that are the same as mine. 'Why, Lord, why?' I didn't have an answer for her. All we could do was cry together as a family...and wait.
I was drawn to the book of Job - here was a man who had suffered much and maintained his faith: