Getting what You Want and Fighting for It

                    I have been away emotionally the past couple of weeks. Now I am feeling better. While I have been very busy with workouts three times per week with a personal trainer, it does not come easy to carve out time for myself. This is going to be the year I vow to commit to myself to be in better health. I am fortunate I have this option because many do not, through no fault of their own.
                    My oldest son, for example, despite the muscular dystrophy he lives with day to day, is otherwise healthy in comparison to others we know who are affected with muscular dystrophy. Recently, he was with my other son and they were in NH when I received a call around dinnertime. My youngest son asked what medicines his brother took each day. Immediately, though he remained very calm, I realized something was wrong. He had called an ambulance for his brother because he was having difficulty breathing, This happened before and he passed out because neuromuscular patients cannot expel enough air from their lungs causing CO2 to remain in their lungs which makes them sleepy, enough to pass out. Both occurrences, my sons were together and my youngest son handled the situations with grace and courage. By the way, oxygen is like poison to these people as well because it causes the same phenomenon. My youngest son was very upset because the emergency room staff would not listen to him and use the inexsuffolater (cough assist machine) to retrieve mucus from his brother’s lungs and instead performed invasive treatment which was a ventilator (intubation). This does not allow the person to communicate. I went home and was planning to go to Portsmouth Regional Hospital, when the doctor called me to say my youngest son had requested transport to MMC for his brother. Immediately, I called his doctor here to explain the situation and replied that I wanted him off the ventilator immediately knowing that neuromuscular patients can become forever dependent upon the ventilator. I called my mom and she joined me at the hospital for my son’s arrival a short time after midnight.
                     I spent the night there in the special care waiting room and told the nurse to let him know I was there. My son was angry he had been ventilated. There was fire shooting from his eyes. With his eye movements, my husband & I figured he wanted the bed sitting higher and wanted to have spit suctioned from his mouth caused from intubation. He was on intravenous, antibiotics and was catheterized. I brought my cough assist machine from home at the doctor’s advice in the event there was a shortage of that type of equipment. The respiratory therapist was able to get a machine for his room allowing me to take mine home. I fixed the settings like ours from home as I talked with the respiratory therapist. My family is all trained on the use of the machine.
                      The following morning, my son was taken off the ventilator and there was talk of getting him a Bipap machine for evening use to facilitate with breathing. We knew it was time from the results of his last sleep study but ultimately it would be his decision when to get the equipment. Because of this incident, the choice was made for him. It is always bittersweet when a new piece of equipment comes home because something is lost… and something is gained. As soon as tubes were taken from his throat, we used his cough assist machine a few times to clear his lungs. That evening my husband would stay the night.
                     I arrived the next morning around 10:30AM to see oxygen tubes in my son’s nose and he did not look good. My husband wasn’t aware of oxygen danger but I was because of a friend whose son nearly died from being given oxygen. I realized I had not shared that info with my husband. The nurse came in and I asked about it. She said his oxygen saturation levels were falling. My son could not keep his eyes open. I told her that the oxygen tubes would be coming out and she advised me to consult with the doctor. As soon as she left the room, I took them out of his nose and started with his cough assist machine. I took out a lot of mucus and he seemed to be responding. The machine on the wall  kept beeping because the oxygen levels were low but I kept working with the cough assist. I put ithe oxygen tube back in fhis nostrils for a short while and then repeated the procedure. After almost two hours of using the cough assist machine, he was alert, and responded by having his oxygen saturations at 100 percent. He then maintained those oxygen levels. The nurses were astounded, but it did not take a rocket scientist. From what I have researched, most medical personnel are not trained on the non invasive approach to pulmonary care, much less even aware of how it works. There are some medical personnel who know. There is also no protocol for the standard of care for these patients.         
                    Achieving optimum health can even be as simple as which masks the patient uses. For my son, we chose to use nasal pillows for his Bipap, as using a full face mask can also cause complications with weight loss due to distension of the stomach as it receives too much air. There is so much to learn beginning with me and also the medical personnel. I have learned two things over the years. Whatever ‘sentence’ the doctors give you… take it lightly as everyone responds differently and most importantly LIVE your life. They only know from some of their experiences and most likely schooling. We are the ones who live with our loved one’s diagnoses. We have learned to achieve emotional health as well. Don’t let them take away any hope you have to keep you going. The next most important thing I have learned is that I will not accept NO for an answer in my care or anyone else’s care in my family. Many times, you will be butting heads with medical personnel, but remember, you don’t have to take those folks back home with you. I must say that I was most impressed with the people at the hospital, especially the Special Care Unit.

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