When I arrive in my hospital room, it is the usual onslaught of hospital employees. The nursing assistant records my vitals, the respiratory therapist checks my ventilator and records the ventilator settings, the nurse asks an endless stream of questions as she registers me, etc. The night quickly turns into morning. As the early rays of the sun illuminate the eastern sky, my friends, Mr. and Mrs. Pulmonologists, enter my room.
The encounter proceeds much like the previous day. I am told over and over again I do not need to be on a ventilator. I am told I need to begin weaning from the ventilator. As much as I protest my need for the ventilator to breathe, the clinicians ignore my remarks. I am told a number of other specialists need to see me before I am to be discharged. I am happy to hear the word “discharge”, but I am aggravated that I have been admitted to the hospital if no treatment was going to be given for my respiratory infections. I am very grateful when the clinicians leave my room.
The day drags by. Only some of the medical team visits me. As I sit pondering my meeting with the pulmonology group, God suddenly reminds me of my dear, beloved pulmonologist. At an appointment earlier in the year, my pulmonologist randomly blurts out during our visit that I am going to be on a ventilator for the rest of my life. This news was not a new revelation. I have known since being started on BiPAP in December 2016 that my respiratory failure would one day lead me to need a ventilator to breathe. Since there is no cure for my diaphragm muscle weakness, once I started using a ventilator to breathe, I would need it for the rest of my life. However, the bluntness of my doctor’s remark threw me off balance. Her words had finality to them. Her words seemed as though they were a life sentence. I always have hoped that one day I would miraculously be healed from my health afflictions. But the harshness of my pulmonologist’s words quench the small flicker of hope which always seems to burn within me. As I recall this memory to mind, I suddenly am overcome with laughter. I instantly think, “Why am I worried about this hospital’s pulmonology team? Who am I going to trust, my amazing pulmonologist or these two random doctors?” My heart and mind are set at ease. The fear which had gripped my soul vanishes. I thank God for placing this memory in my head. I thank God for continuing to guide and lead me.
Soon, it is evening. The infectious disease team still has to visit me to clear me for discharge. My nurse calls the infectious disease team. It is decided I will be staying another night in the hospital. I am terribly bummed; however, I am absolutely exhausted from getting no sleep the night before. I know being discharged late at night would greatly exacerbate my Mitochondrial Disease. Moreover, it is Shabbat. I would much rather spend an additional night and day in the hospital if it means I can observe Shabbat by reading God's Word, watching Shabbat services online and praying. I settle in for the night.
Unable to sleep due to extreme fatigue, I start praying for my pulmonologists. I pray God will open their hearts and minds that I need my ventilator to breathe. I pray God gives them wisdom and leads them. I pray no patient will ever have to endure what I am enduring. I know I need a ventilator to breathe. However, someone else with less medical knowledge might actually heed the doctors’ advice, which will ultimately lead to complications and possibly death. I thank God for the medical knowledge I have. I thank God for His protection. As the last of my words leave my heart and mind, I drift off to sleep.
(Link to Part Four click here)
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