We had our bi-annual trach and vent clinic on Monday, and a lot of unexpected and exciting decisions were made! They were both exciting and scary decisions, but it’s a “good scary”
Pulmonology and ENT Meeting with Dr. Ogborn & Dr. Powitzky
We’re keeping the ventilator equipment, but only as a precaution against any upper respiratory infections or possible emergencies. We’ve been fortunate to not need it since August of 2017 for apnea events or illness. It’s more of an as-needed item now.
He originally wanted us to work towards using the PMV (Speaking Valve) on all waking hours. After Jacqueline asked about our next steps to move towards a cap, then I asked about when should we push him vs. remove it. Dr. Ogborn said always try to challenge John, but we would know when he needs to back off because he will be breathing differently. Jacqueline has noticed over the past few months that there’s a type of “pressure release” sound when we remove the valve after an extended amount of time. Dr. Ogborn suggested we give him a few seconds then put it back on. If he really doesn’t tolerate it then we will know real quickly.
The Good News!
Dr. Ogborn said he would talk to Dr. Powitzky about downsizing his trach to start trying to cap. Capping is when a small plastic cap is attached to the end of his trach to force air through his nose and mouth. It’s the next step after the speaking valve as the speaking value only allows air in through the trach, but forces it out through his throat allowing him to speak and make sounds. At this point of the clinic meeting, Dr. Powitzky joined us, and both doctors started talking about eventually capping off John’s trach. Dr. Powitzky said John’s trach is actually on the smaller end for him. So they both agreed, we could start capping immediately.
This is great news since this means we are closer to the trach coming out.
Of course, Jacqueline is also nervous because this is all we have known with John so far. So it is a good kind of scary!
Svenja (Trach Specialist)
Svenja, John’s Trach Specialist, came in with a red cap and placed it on him.
One item we never really thought much about was how John’s sense of smell has been limited with his trach. You obviously need your nose to detect scents, but since not much air has been passing through he hasn’t experienced the same senses we have.
One of the first things we did after placing it on him was let him smell a coconut scented lip balm; because it’s all we had on us at the time.
He seemed to understand what was going on and had few words. He smiled after smelling the lip balm and when asked if he liked being able to smell he gave a nod.
John is to wear the cap at least one hour daily with increasing the duration as he tolerates.
We are so excited, and somewhat scared at the same time! Please continue to pray for us as we go through this change.