With such extremely physically and mentally compromised children as my son, it is the attention to small details which gives us an important tool in building protocols that benefit their wellbeing.
A case in point was this morning. Struggling to get out of bed with aches and pains I made my way to the health clinic to find out where the authorization for the Bipap stands, as it is essential to start Segev on the device as soon as possible. Procurement and authorization are of course the sworn enemies of bureaucracy and just as I had predicted things were not going smoothly. So to see if I could get things running smoothly an early visit was in order before getting Segev from his mother's.
I had to also fill several prescriptions and hoped to get some shopping done, but then his mother called to say he was not breathing well and his oxygen level was stuck at 87%, despite constant supplemental oxygen and her working on him with PT.
Being primarily a bodywork therapist these last 23 years I'm always looking to adapt movement and ergonomics into specifically tailored techniques. Rarely do I go by the book and Segev and other children have taught me that you need to write the book, not read it. Chest compressions in such a situation can help, but because of Segev's massive kyphosis you must simultaneously give contra pressure on his back to effectively move the air out of his lungs, in the hopes of opening the blockage. The two sided pressure then lets his head tilt back more, which obstructs his airway necessitating holding his mouth closed. Another pair of hands are needed. I quickly called my daughter but had forgotten that Hanukah vacation was over and she was back in class.
Pressing on the area close to where the phrenic nerve, responsible for activating the diaphragm (paralyzed in Segev's case) descends into the body also can raise his oxygen level, through a poorly understood mechanism.
"Did you press on the phrenic nerve?" I asked her. "Yes, I did" she answered. This conversation is taking place while I am filling the prescription at the pharmacy. The pharmacist doesn't have all of the meds, but the owner, hearing this says she is willing to check if it's in stock. No, that won't be necessary I say. In the meantime the pharmacist has left me to do something in the back room and the owner is once again busy with her customer. "Can we finish up here?" I ask, feeling that distinct, muffling pressure at the back of my neck whenever a bad status report is given me concerning my son. I forget to tell his mother to use the ambu-bag to force air into his lungs. Another technique, like the compression and the pressure, there to add a small improvement to Segev's breathing.
"Give him the inhaled cannabis", I tell her, hearing in the background the labored breathing of my son and the alarm of the pulseoximeter. The cannabis, initially for pain, has proven effective in relaxing his breathing and even affecting certain of his smaller seizures.
When I arrive at his mother's house Segev is barely maintaining 90% while on four liters of oxygen. The oxygen condenser is huffing and puffing and Segev is completely non-responsive. I listen to his chest to determine if the left lung is open or not but this is not easily accomplished as he lies on his side on the couch and my neck is so stiff I can barely turn my head to the required angle.
"It's closed", I tell her and begin using the now-remembered ambu bag. It proves to be ineffective so I move on to pressing on the area between his shoulder and neck, which has the effect on the phrenic nerve. I can't shake a vague sense that something isn't right. The muscle, ever increasingly like a drum snare, stands out and I know from experience that my pressing is causing him severe pain, yet he doesn't react in any way. His breathing is not labored, he appears calm, yet his oxygen level won't rise. Concurrently thoughts of hospitalization as well as a tinge of despair sprint through my mind. 'Something isn't right', I think. His level rises slightly and I proudly proclaim to his mother, "you see, you have to keep at it!"
But then it drops off again, admittedly still one point higher than I started but, as she points out, "he already had a rise before you came."
Dejected and worried I start to think what else there is to do. My first thought is to increase the oxygen output, the thing I least like to do because then you are not actively doing anything to remedy the cause, being merely symptomatic in treatment. It's then that I notice what's wrong. The nasal cannula usually whooshes loudly as the oxygen rushes through: it was completely silent.
"He's not getting any oxygen!" I shout. I go to the machine and find that the water reservoir was not threaded in place properly and all of the air was escaping at the start point.
Fixing it in place I say, "now you'll see that he goes up to 98%" and so he did.
Being aware of the many components involved in containing even just one problem is a slow process of discovery and one that should never stop.
Checking and rechecking meds and equipment, never relying on the fact that you've already done each action a thousand times, just isn't good enough. We get tired or simply aren't aware. Distraction is also particularly dangerous and I've found that if there is someone else with me, especially if there is conversation involved, while I am taking care of Segev I can easily miss a step in keeping to his schedule. Conversely habit is also something to be wary of because you can get to the stage where you're sure you did something only to discover later that either you didn't or you have reason to believe that you didn't. This is why everything that goes on with Segev gets written down.
Most days these crises of breathing or seizures or pain require hours of effort, but find (at least temporary) resolution never the less. And then we get this as a reward: