When your biggest fears become reality, you have two choices: One, go into complete shock and then denial and other spiraling phases of avoidance. Or, two, go into complete shock and then adjust as soon as possible so you can continue pressing on.
The day after Christmas could certainly warrant more feel-good types of stories, but that’s just not the reality today - at least at our home. While we thoroughly do enjoy the holidays, the care-giving never stops and this year has been especially challenging for my wife and me.
There is always one child who needs attending to, and since our oldest daughter, Gwen, is still in the hospital recovering from multiple surgeries, including a freshly inserted trach, the responsibilities are continually growing. We’ve been fearing a trach since our daughter was about three years old. That fear turned into reality just before Christmas.
Gwen was six months old when we first found out that her part of the brain in charge of the smooth muscles - the ones responsible for eating, swallowing, breathing and digestion - was not functioning as it should. At that time we made the choice for g-tube surgery that allowed us to not worry about the feeding-for-nourishment issue. And, we started to focus on the swallowing and managing of saliva, which also was very tough for our daughter to manage.
However further studies at age 2, led us to quit doing feeding therapy (no more tastes of garlic, strawberry jam and other such oddities) and to the removal of her tonsils and adenoids to prevent her from obstructing during breathing.
As we all pressed ahead, partially in the name of aspiration avoidance, the next procedure (another total nightmare) resulted in Gwen getting pseudomonas, not to mention that it didn’t do anything for reducing her saliva output (we tried the Botox injections).
Yet another attempt resulted in us trying a robinul patch to help with drying up her saliva output (the attempt warrants it‘s own post, I assure you).
Finally, we went ahead with a surgery to have her submandibular glands removed and parotid glands tied off so that her mouth would produce less saliva. This worked very well and we‘ve been managing her respiratory issues very well for the past several years.
In addition to the above, we had been meeting with an orthopedic surgeon for Gwen’s inadequate hip development and severe scoliosis. And prior to any surgery our main concern has always been Gwen’s airway - ranging from frequent suctioning to frequent respiratory distress.
And if there has been one procedure that we’ve been trying to avoid for the longest period of time, it has been the spinal fusion surgery. Not only were we waiting for growing to cease, but we were trying to find an ideal time from a respiratory standpoint.
We had finally found our window - two days before Thanksgiving - and scheduled it well over a year ago, way before our third child was born, and way before we knew that she would end up with a severe brain injury similar to our oldest daughter.
The spinal surgery went very well. Gwendolyn’s recovery was a complete success and we were well on our way to going home within the seven to 10 days that were planned, until pre-pneumonia starting setting in.
One doctor’s visit to our PICU room led to another specialist in the room to another person or that one, and eventually a sleep study was recommended by both the attending and a pulmonolgist. Although we were not happy with the length of our stay, we agreed to doing the study.
The results came back and we were told she was “obstructing” equally while she was awake as much as she was while she was asleep. The only solution: a tracheotomy.
Although depressed and saddened by this new reality, we quickly accepted the facts before us. We knew that this was in best interest of Gwen and that we had to do this surgery as soon as possible. In fact, this surgery also went very well.
But it was two days afterward that we learned of news that made us second guess our decision-making.
We found out that Gwen was receiving six times her regular dose of diazepam (valium), a heavy muscle relaxer, which obviously affected her breathing and the results of the sleep study.
While the facts of this story certainly digress away from the choices I mentioned earlier, the point is that my wife and I could have easily chosen to be stuck in shock and continued denial, especially given that we made our decision for our worst fear, a tracheotomy, based upon ‘not-so-solid ground.’
In fact, I’d say that would have been the easiest thing to do, to stay in an ever-so-bitter place of anger. However, since there is no changing reality, no going back, no second-guessing every single scenario, no quick-fix to the current situation, we knew that moving on was our best bet.
We knew that we made the best decision we could based upon the current information we had, so we are moving on and pressing forward. We have always done this.
Playing “Monday-morning quarterback” is very easy to do when you are a special needs parent because many of the choices we are faced with - whether they be in medicine or education or government or another important facet - are among the toughest of choices a parent makes in the world.
As all of us look back, look ahead and look around us, we are making a transition from the old year into the new one. However, even with all of the tough decisions we have made, are making right now and will be making, we must constantly move forward, knowing that our choices will carry our children forward, and that it is hopeful parenting at its best.
Tim Gort is a professional writer who writes about his personal challenges and triumphs of being a special needs father at the family’s bog: http://thegortfamily.blogspot.com