Progress

One of the most amazing things of being here is seeing the progress people make. It is truly miraculous. When I first came here, the woman in the room across from me had a severe brain injury. She must have had a trach, which they removed, because she had a bandage over her throat. She was unable to feed herself. She could barely sit in the wheelchair. She couldn't follow commands, and she didn't speak. Her outlook looked grim. I could not see how she would ever be prepared for anything more than a nursing facility. Today, as I was doing pt, I noticed the physical therapist working with her on one of the mats. She was sitting on the edge without the aid of anything. She wasn't being held or supported by anything to keep her upright. This in itself was amazing, but then she got up and stood using the walker! I was absolutely blown away. I couldn't believe it. Had I not seen it with my own eyes, I wouldn't have believed it, knowing how she had been initially. I felt like crying tears of joy.

Later today, I saw another miracle. One of the guys that had been admitted last week for brain trauma was in the pt room. When I first saw him it was obvious that he had a tbi (traumatic brain injury). He was hooked up to oxygen through a trach mask. He had a neck and back brace. He was strapped into the wheelchair to keep him upright since he wasn't capable of holding himself upright himself. Today, not only was he no longer hooked up tho the oxygen, thus must be going through the process of capping or has been decannulated, but he wasn't strapped into the wheelchair. He still wore the neck brace, but not the back brace, and most miraculous was he was not just standing, but walking, walking without the aid of anything. He was just walking around the gym, with his physical therapist only holding onto his gait belt as a precaution. He didn't seem to need a lot of assistance. He walked one time completely around the room. I feel so blessed to have the opportunity to have seen this, to watch the progress of other patients.

While it is easy to see the progress and incredible improvement others make, it is much harder to acknowledging my own progress. I do recognize that I have made a lot of progress while here. I have worked incredibly hard, and it shows. The goals set for me when I came here were to be completely independent with the use of aids by the time of my discharge. I had to be able to be completely independent because at home I really don't have any help. There isn't anyone at home to help me with daily activities. I live with my dad, but he doesn't provide any care for me. Though I could be independent with the use of aids such as walker, wheelchair, or cane, I must be able to complete my daily activities without the assistance of another person in order to be ready for discharge. When I was first told this, I thought this would be easy. I couldn't imagine needing any aids by the time I was discharged. I expected that I'd have full functional ability - able to walk unassisted. I thought that I might need a cane for longer distances, as I had before, but never imagined that I'd need a wheelchair of walker. Granted, I hadn't really acknowledged the extent or severity of my issues. I thought it was just weakness, in which case I'd do exercises and get stronger. I remember the first day when they put me up to the parallel bars. It was expected that with the use of the bars, I could stand unassisted. This wasn't true. I couldn't even pull myself up. Looking back, I do recognize that I have made a lot of progress. No, I am not where I'd like to be. I am not back to normal, but I am greatly improved. As my goals had stated, I am able to care for myself independently with the use of aids. I am able to walk short distances and stand for short periods of time using the walker. I am able to get around using a wheelchair.

I have made progress in other areas as well, not just walking. When I first came here, I wasn't able to bathe myself. Showering was an extreme challenge with my trach. The first shower I took, took over an hour. I needed help dressing myself. I could barely stand long enough to pull up my pants. I would stand, hold onto the walker, and the aid would help me pull my pants up. I had to take frequent rests. Now, I am able to basically shower and dress in ~1/2 hour. Before, I'd need a nap after showering because it was so physically exhausting that I needed to rest. Now, I bathe and dress pretty much without help. I am able to stand for longer periods of time and can do so without being completely exhausted after. Don't get me wrong, showering and dressing is still rather tiring. Though my legs were the area of greatest weakness, I have also been able to work on the strength in my arms. When I first came here, I needed to be pushed in the wheelchair because I was too weak to push myself. Now I am able to push myself in the wheelchair and able to get myself around.

The area that I have seen the most improvement, however, is my speech. I came here unable to speak at all. I was beginning to be able to talk over the trach, but I could only say a few words. I still had to write most of what I wanted to say. Talking was exhausting and at times unpredictable. I could never be sure that when I went to speak, I would have a voice and sound would come out. Often I would go to speak, but no sound would come out. I had little control over when I was able to speak or not, which was very frustrating. I was not able to tolerate the pmv at all. Once we discovered the problem with using the pmv and got me one that worked properly, I made huge progress with my speech. I am so proud of my voice. I enjoy showing it off. I worked very hard to talk normally, and now, for the most part, just by listening to me speak, you wouldn't know I have a trach. My speech is pretty much completely normal. Occasionally, I can be hard to hear. Sometimes I have difficulty speaking, but for the most part, my speech is normal. Not only have I met all of my speech therapy goals, but I no longer need speech therapy.

It's funny what you come to see as an accomplishment and progress. Before the trach, I never thought about the things I did every day. Most people don't think about their ability to speak or do other things such as shower and dress themselves, but having to relearn everything is a challenge. Even the little things in life become accomplishments. The important thing to remember is that it is progress. You need to take baby steps and be proud of your progress. Be patient and kind to yourself, knowing that it is one step at a time, one day at a time.

Zebras - a rare breed

When doctors go to medical school, they are taught, when you hear hoof beets, think horses, not zebras. In other words, think the most common cause of illness, not the most obscure. This has become a problem in medicine because seldom do doctors think outside the box. They try to fit everyone into that round hole. But patients don't always fit in that round hole. When a patient doesn't fit, the doctor keeps trying to make them, which is a lesson in futility. It leaves both the patient and the doctor frustrated. When the patient continues to not fit, the doctor just throws them out. Not in the literal sense, but similar to if you think back to being a child and how if the peg didn't fit, you first tried to make it, and when you still couldn't make it fit, you tossed it to the side, putting your attention to the ones that did fit, and ignoring the one that didn't. For some kids, this is the end of the game. For others, they continue to search for the hole it does fit in, though, this is much harder to do. It is very rare to find the doctor that doesn't throw you to the side and ignore you, but rather continues to try to find which hole you fit in. The doctor  that thinks zebras, not horses is this type of doctor.

Even here, in rehab, I am a zebra. I am not a "normal" trach patient. Most patients that they see here that are trached, have temporary trachs. They have been in some sort of accident or trauma. For them, the trach is temporary. They had it put in because they had to be vented for an extended period of time while they recovered from the accident. As soon as they get here, they cap them. The trach is then removed as soon as possible. For me, circumstances are different. The trach is not temporary. I was not in an accident, nor did I have any type of injury to cause me to need a trach. The trach was put in due to a disease process and the fact that I am in respiratory failure. The trach has given me a chance at life. Without it, I would not be alive. It is not a temporary thing, and for the doctors here, this is a different concept, something that in some ways is difficult for them to wrap their mind around. Rather than focusing on getting the trach removed, I need to focus on learning how to live with it.

I know that I am not the typical trach patient. I understand that this can be a challenging concept for doctors. They are not used to seeing a person so young with a permanent  trach. The first thing they discuss with me is when we can start capping and weening me off the trach. They can't comprehend that this is permanent, well at least as long as I want to be alive, since it it the trach that is keeping me alive. People tell me that nothing is for sure. That is true. Something could happen or they may discover something new that will help treat my lungs, so that I don't need the trach, but this is not a guarantee. It can't be counted on, and in all likelihood, I will have the trach for as long as I live. The trach has allowed me to breathe. Without it, I'd be back in the hospital, on bi-pap or worse, fighting for every breath, knowing that my body could go on this way for short period of time before it gave out.

I am very protective of the trach. Patients with trachs have to be to some extent. It is your airway, and how you breathe. It is also direct access to your lungs. Thus, you must be vigilant to prevent infection. I am a little more protective than some because of all the challenges I faced and hurdles I have had to jump to get here. In addition, I am very protective because of the complications and bleeding that I experienced with the trach.

When Dr. Miller first came in and wanted to talk about capping, I automatically said no. Obviously, he had not read my chart and the purpose of the trach. I informed him that this was not a temporary trach, it was permanent, and it would be staying exactly where it was. I explained further that as long as I wanted to breathe and stay alive, I had to have the trach. Then, he tried to suggest taking out my current trach and putting in one that could use disposable cannulas. While it would be much more convenient to be able to take out the inner cannula, throw it out, and replace it with a new one, one that didn't require cleaning; it would mean taking out the entire trach out to clean it, and this I would not like. I would be afraid of something happening when I took it out, or not being able to put the clean one back in. The other suggestion was to take this one out and replace it with a non-cuffed trach. The thinking behind this was that because I am not vented, I don't need the cuffed trach. This is true currently, however, it would defeat one of the purposes of the trach. In addition to allowing me to breathe better, the trach allows them to easily put me on a vent without the need for intubation. I have been intubated a lot and the trach allows them to do this without causing the trauma and damage that occurs with intubation. With everything that I went through with this one, I have a "don't touch the trach" policy. Anything else is okay, but don't touch the trach. The only person allowed to touch the trach is Dr. Constantino. So though the doctor means well, he has to realize that this is a permanent thing. I am not going to be weened off or capped, but rather I have to learn how to live with it, manage my everyday life, and be able to handle challenges that may come up.

It is a bit frustrating. While I understand that this isn't the norm for the majority of their patients, it doesn't matter. It is the reality for me. I had asked for the oxygen adapter for the pmv. The pmv has an adapter that fits on it and allows you to connect o2 tubing from the canister itself directly to the pmv without the need for a trach mask and venti regulator. Dr. Miller would not order it because they didn't have experience with such things. Besides, I think he still has the idea in his mind that I will be capped and off o2 sometime in the future. Again, while this may be true of most patients, it is not true for me. I have been on o2 for 4 years. While it would be wonderful to not need o2, this isn't realistic. Unless my lungs get better, my o2 requirements will not change. I will not be coming off the o2. The o2 adapter would allow me to be much more independent and have more freedom. He referred me to Dr. Constantino; however, Dr. Constantino is the surgeon and doesn't make decisions regarding o2 requirement. Therefore, it will probably be up to my pulmonologist to order it. The frustrating thing is that as a patient, I can't just order the o2 adapter for my pmv myself. It has to be prescribed by a doctor. I thought that if I had my appointment with Dr. Constantino and he said that it was okay, giving Dr. Miller permission to order it, that I could get it and try it out while here. My appointment with Dr. Constantino had to be changed. I voiced my concerns of not being able to have Dr. Miller order it without Dr. Constantino's approval, and thus not getting it while here. Dr. Constantino may not feel comfortable ordering it either because he is the surgeon and doesn't make decisions regarding my o2 requirements. He just takes care of the actual trach itself. He could give permission, saying that the o2 adapter isn't contraindicated with the trach and my condition. I had wanted to get it while in rehab because obtaining it while here is much easier than at home. Here, the doctor orders it, they place the order, and then it comes. There are no hoops to jump through, no red tape to cut through. At home, there will be many obstacles and it may take a couple months to get something that could be obtained here in a few days. For instance, I have been trying to get a wheelchair since December. Here, they put in the order request and it is here a couple of days later. Everything is streamlined, making it easier and more efficient. I don't see the problem with ordering it since no harm can come by ordering it and trying it while here.

Though it can be special to be a zebra, it is often quite frustrating. Nothing about a zebra's medical care is typical, and often this can be extremely frustrating. If only medical personnel would listen to us. We do know our bodies best.