Part II...Homecoming

After spending a little over 6 weeks in the sub acute facility, I was finally cleared to go home. Prior to their decision, my family as well as I had to demonstrate proper care for myself including a full trach change in the event of accidental decannulation. My poor mother was elected for the procedure, I have to admit that I was not too thrilled with this demonstration. I asked for and received anti anxiety medication prior to the dreaded trach change. It only helped slightly but something is better than nothing. My mother was just as nervous about the whole thing and was visibly shaking, which did not help matters any! She examined the supplies that were laid neatly on the table to make sure everything was there. A new #6 Shiley DCT, trach sponges, a new trach tie, the all important surgi lube to lubricate the trach so that it would slide in easier, gloves and a syringe. She must have checked them a half a dozen times before she let out a very prolonged sigh and I swear a gulp. Her uncertain hands slowly and carefully removed my old ties (unfortunately, some of my hair was entangled in it and was forcebly removed by the velcro) and sponges. I had a death grip on my still intact trach while she prepared the new trach, checking to make sure that there were no leaks and then finally lubricating it. She deflated my cuff and proceeded to remove my trach. It was an odd sensation...it felt odd to have the feel of air against my now bare neck and exposed stoma. Quickly, she replaced the old with the new and properly inflated the cuff. Out of habit, I immediately reached for the trach and held on to it with an iron grip until she fastened my new tie snuggly and replaced my sponge. Both of us visibly relaxed and even let out nervous laughter complete with "whews". She did an excellent job, I will say that. I have to give her huge kudos for what she had to go through in order to bring me home, to her home with my children. She had no knowledge of medical procedures let alone performing a complete trach change. It took great courage to go through the classes and then having to repeat what she had learned on me.

Coming home also involved redoing part of my mother's home so that I could safely live there. She had installed a chair lift as my muscles did not allow me to climb any length of stairs successfully so that I could get to the bathroom and my room. A hospital bed was donated and set up, the DME company had set up my ventilator and other necessary equipment. A makeshift ramp was constructed so that I could be transported into and out of my home. It was very crude but it served its purpose. I will never forget the day I went home, it was just prior to Christmas, it was the greatest gift I could ever receive, time to spend with my family. My husband had left the picture at the time I was trached and vented, he could not handle the responsibilities necessary for my safety and health so I told him to move on and I would do the same. He now lives in Florida with his mother and is barely in contact with his own children. Very sad I know.

It took some time to get accustomed to my new lifestyle. It was difficult, I cannot think of any other word that accurately describes this new journey. Difficult and frustrating as I prided myself in earning my wings, my independence in the world. I had after all worked insane hours supporting my family while getting my nursing degree. I was superwoman, but even superwoman has her kryptonite. This was a very humbling experience for me, I had to rely on others for my survival, even for my hygiene. I took for granted the simple act of privacy while showering...I think everyone does. You just don't think that something would happen in your life that would require someone to actually help you in this most intimate way. It was odd having my own mother in the shower room with me, so odd that I decided that I was going to figure out a way to shower myself with this trach and ambu bag. I had to make sure that I did not get any water into my trach, easier said than done if you don't know what to do. With one abberant flick of the wrist, water could easily get into the stoma and wind up in the lungs, choking me. So I had to be extremely careful with my actions. I finally figured out a safe way to shower. First I washed my hair with my head down being careful not to direct any water into my trach. I towel my hair fairly dry and then I step into the shower holding the hand held device. I direct the stream directly to my back and then gradually to my front while washing up. I "bag" myself intermittently as I am able to come off of my vent for short periods of time. As soon as I feel fatigued, I give myself a few bursts of air via the ambu bag to ventilate me. This works well for me much to the surprise and amazement to non family members (they are simply used to my antics by now).

Being that the existing ramp was only to be used on a temporary basis until a new one could be built, we had to find a way to raise funds to build a new one which was very expensive we found. I was totally tapped out financially as was my mother as she invested much of her money to buy a handicapped van that would transport me as well as for making adjustments to her home to accomodate me. It was an urgent matter to build the ramp due the deteriorating condition of the porch. The porch was unsafe with sagging areas that crinkled ominously under a person's feet as they stepped on the rotted areas. I envisioned someone falling through the decayed wood in my dreams. Morbid yes, but I was really worried that someone would eventually fulfill this prophetic dream if that porch wasn't repaired and soon.

Thankfully, our community came to the rescue. They decided to help raise funds for the material. They accomplished this by making subs and selling them through our church. Everything needed to make them was either very discounted or donated by generous businesses. I was very touched. This event was highly publicized, with adds in the paper and on the radio. In all, the community through sub purchases and private donations raised over $10,000 for my cause. My heart swelled and continues to do so, with pride, love and admiration for my fellow neighbors. Many of these people have known me ever since I was a young girl, literally watching me grow up through the years. The time came to build the ramp and porch, the local hardware store gave us a discounted price on the materials. My community also rallied to form a group of veteran contractors to build on a volunteer basis. Again, I was overwhelmed by their generosity. It was an amazing site to watch all of these men work together building that ramp and porch. It wasn't just a ramp to me, it was a bridge to regaining some of my independence. I could finally leave the house in my electric wheelchair without assistance. It was an awesome feeling...

Stayed tuned for part III :)