One Night at the Bissell's
Legislative Breakfast, 2000
This is a speech that my husband gave at a legislative breakfast. The idea was to help legislators understand what families deal with on a daily basis. I'm sure many of you can relate!
My name is Rich Bissell and I am the father of twin six-year old boys who have disabilities.
In July of 1993, my wife Cindy gave birth to identical twin sons who were born 3-1/2 months too soon. Both boys had many of the problems common among premature infants. Eric's most significant problem is spastic quadriplegic cerebral palsy. Aaron's problems are mostly respiratory, he has bronchopulmonary dysplasia and subglottic stenosis. Aaron's airway was damaged from the ventilator tube when he was in the Neonatal Intensive Care Unit (NICU). The ventilator certainly saved his life, but no medical procedure is done without the possibility of complications. Aaron had his tracheotomy surgery at one month of age. His condition was complicated by bronchopulmunary dysplasia and he was oxygen dependent for several years. After three months in the Neonatal ICU, the boys finally came home.
When I was thinking about what I was going to say today I looked back at my journal to see what life was like during those first few hectic years. I would like to share with you a small part of that journal. This is pretty much word for word the original journal entry made back in 1994.
February 10th 1994
1:00 AM - The perching alarm has been sounding for about a full minute before I am able to pull myself out of a dreamless sleep. I know it has been ringing because my wife has already managed to make her way to Aaron's bedside and is in the process of checking his lead wires before I am even out of the bed. It is my turn to do the night shift and I have failed miserably in allowing her to get some much-needed sleep. "Sorry Hon," is all I can manage as she is already making her way back to bed. The alarm is no longer ringing and Aaron is sleeping comfortably. One of his monitor lead wires had come loose and the apnea monitor was no longer getting a signal telling it that Aaron was breathing.
2:15 AM - I wake up to the incessant alarm of Aaron's saturation monitor. I wipe the sleep groggily from my eyes and check the time. All of Grafton is in restful sleep and I am envious. It was only a few months ago that we brought our twin boys home from the hospital and neither Cindy nor I have gotten a full-nights sleep since. I quickly suction Aaron turn him on his side and go back to sleep.
3:25 AM - It feels like I have just gotten back to sleep when I hear Aaron's "Darth Vader" like respirations. Whenever his secretions build up in his airway, his breathing gets noisier and noisier until he is suctioned, making him sound like a miniature replication of the Dark Knight from the popular Star Wars movies. I check his oxygen saturation; it's 92 and falling. If I do not suction him soon the low saturation alarm will inevitably sound. I turn on the small night light next to his crib and look at this tiny miracle. He has put on a lot of weight over the last few months and is now up to a whopping 8 pounds. The heavy drone of the suction machine is a familiar sound and he does not stir. I clear the tube with normal saline and then suction just deep enough to clear his trach tube. He barely even stirs, having learned from birth that he would have lots of interruptions during the night. His sats crawl back up to 97; his color is good, his heart rate and respirations, normal. All is well.
I take a moment to check on his brother Eric. Eric is sleeping restlessly and looks like he will soon be up. It's been four hours since we last fed him, or was it Aaron who ate last. They look identical in every way when they sleep. I take a moment to write down the time and saturation level in Aaron's log and then crawl back into bed.
4:30 AM - Eric is fussing and hungry. I hurry to him, before Aaron is woken by his cries. I quickly make my way to the kitchen and pop a previously prepared bottle into the microwave. As Eric eats, the constant beat of Aaron's heart rate monitor reassures me that he is fine.
Tomorrow will soon begin the continuing routine of medical equipment, therapies, medical bills, and a constant parade of therapists, nurses, and case managers, as well as the administration of medications, treatments, and feedings that fill our days from dawn till dusk. That, coupled with the many nights of broken and nonexistent sleep, and working full-time jobs, make for cranky coffee filled mornings at the Bissell house.
But for now, Eric's belly is full and he asleep. The constant hums and beeps of Aaron's machines lull me back to sleep. My last thoughts are not of medical equipment, sleepless nights, or surgeries. The thoughts that send me to dream land are of two beautiful miracles that are sleeping in those cribs next to our bed. In the morning, when Eric and Aaron are looking up at me, my heart will fill with joy and pride. On the scale of life this joy easily tips the weight of all the sleepless nights and all the worry that I could ever imagine.
Even after six years of sleepless nights I still feel that way.
A few months ago my wife and I received a call from a family living in Springfield who had just brought home their three-month old daughter with a tracheostomy. Since their child has come home, they have had many sleepless nights, medical equipment problems, insurance difficulties, and cranky coffee filled mornings.
I would like to be able to tell them that things are much better than they were six years ago and that there is a lot more support out there. But it is really not so. Many nursing agencies are short staffed and they are forced to either cut back or go out of business. A family who needs 8 - 16 hours a day of skilled nursing are lucky to get any.
For families who need a PCA or personal care attendant the situation is even worse. Nursing agencies are forced to compete with McDonalds for staff that have the responsibility of caring for our children.
Most of us would agree that children belong at home with their parents. A parent of a medically involved or disabled child has the same love for that child as the parent of a typical child does.
In order to live at home many of these children require a certain level of specialized care. It is my hope that we can work toward a goal of allowing all children to have the best possible support in their own homes.
I want to thank all of you for coming out today and hearing our stories.