Wednesday, June 22, 2011

"If there is no struggle, there is no progress."

I suppose this time comes in many hospital stays. At least it comes in most of ours. The point at which all forward movement appears to be stopped. The plan of action appears confusing, missing or blocked. It usually is accompanied by exhaustion as some events and tension have lead up to this turning point. It's the time that we becomes advocates, adversaries, or arbitrators depending on who is involved and what the issue is. WIthout effort or planning, Deana and I drop into our roles of good cop / bad cop. Delicately dancing and weaving the conversation and conflict toward a conclusion that wins for Max.

We reached the turning point yesterday. On the longest day of 2011, we hit the crucible with the medical teams and Max seemed to be at his worst.

Since surgery, Max has experienced continual high fever, elevated heart and respiration rate, and post surgical pain. Surgery common practices considers fever after abdominal surgery to be routine for the first 48 hours. Close attention was paid to several lab levels in his body to identify possible infection that might be occurring. While no alarms were set off from the lab results, Max's severe symptoms persisted.

Without naming names or specialties, it can be described that team #1 believed the causes of the problems may be related to issues team #2 covers. As Max's parents, we knew that was not accurate. Exerting firm, assertive pressure we made sure that both teams stayed involved and were on the same page. When people hear our medical stories, they are often surprised how much miscommunication and conflict can arise in the care of a patient. We learned long ago that all egos, ignorance, and timidity must be set aside when you are fighting for your patient. We are the best parents a doctor or nurse will encounter but we are also a force to be reckoned with when we must be.

In tandem with the escalating medical opinions and direction, Max was fighting his side of the battle. I made a promise to Max long ago that if he would fight with all of his might, we would do the same. He struggled with temperatures up to 104.6F (40.3C) for days on end. Terrible discomfort from being disemboweled (Deana's description of the surgery) by having nearly a foot of transverse colon removed. Pain that powerful drugs did not seem to be touching. Several sleepless nights and days, he wavered between lying in bed moaning to writhing in his small cell as he wrestled through his struggle. There are no words to describe watching your child writhe in pain when neither you nor a world class medical team is sure what to do about it.

After waging our side of the struggle with the teams yesterday, Max grit his teeth and dug in as well. The medicines began to work. He endured the discomfort of his bowels waking up. The fever finally loosed its grip. He found peace in the midst of restlessness, comfort instead of pain, rest instead of disquietude.

IMG_5912 - Version 2

Yesterday felt like the turning point. He slept through the night. Fever is broken. Bowels have awakened and are successfully moving.

What's next?

He needs to start eating. It will take time to ramp his food intake back to normal levels. His bowels need to continue moving successfully. He will need to transition to home medications. The fever needs to stay away. All this translates to some more days here but we are moving the right direction.

Thanks to all of you who stand in support, encouragement and love. Never assume we don't need you regardless of your distance from us. It takes an army to raise a special needs child.

"Your struggles develop your strengths. When you go through hardship and decide not to surrender, that is strength."

1 comment:

Junior said...

continuing to keep Max in our prayers, such a strong boy.