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.

Adventures of the Passy-Muir Valve

When a person has a trach, nearly everything changes. They have to relearn many things that before the trach, just came naturally. One of these things is speech. With a trach, just by itself, it is extremely difficult to talk. This is because the trach tube is put in below the vocal chords. Since air no longer passes through the vocal chords, it is difficult to make sound or speak. Typically, as a person inhales, the vocal chords open, allowing air to flow past the vocal chords into the trachea, and into the lungs. When a person exhales, the vocal chords close. As air flows over them it is possible to make sound and speech. Since the trach tube is put into the trachea, below the vocal chords, air no longer passes through the vocal chords for speech. Air that is exhaled, goes out the trach tube, thus never reaching the vocal chords. This makes speaking very difficult. It can be done with a speaking valve, or if you occlude the trach with your finger, but without the aid of anything it is very difficult.

When the trach was initially put in, I was unable to speak at all. As much as I would try, I was unable to make sound. Part of this was due to the size of the trach put in. I was unable to use the speaking valve because the trach was too big. The trach was changed to a smaller size so that I could use the passy-muir speaking valve. The passy-muir valve is a small circular valve that is placed over the trach tube. The way that it's supposed to work is that you are able to breathe in through the trach, but when you exhale, instead of it coming out your trach, as it would if the valve wasn't on, it is exhaled either through the mouth or nose. Since it is exhaled through your mouth instead of the trach, the air passes through the vocal chords during exhalation. As air passes over the vocal chords, it is possible to make sound and thus speak. Finger occlusion works in a similar manner. In finger occlusion, you breathe in through the trach through, but as you go to talk, you cover the opening of the trach with your finger. This prevents air from going out the trach and forces it over the vocal chords to be exhaled out of the mouth, enabling speech.

Since the 3rd trach surgery, I have been able to speak without the use of anything. I speak around the trach. Somehow I force the air over my vocal chords instead of having it all be released through my trach. In fact, for awhile this was my only form of communicating. The problem - it took a lot of effort and was quite exhausting. I could only say a few words at a time. My voice was quiet and breathy and difficult to understand at times. However, I could speak and communicate effectively. I tried the occlusion technique and while it allowed me to say a few more words at a time and my voice was stronger, it took coordination. You have to time breathing in and speaking. You obviously can't inhale while your trach is occluded with your finger. So, you have to gauge the timing correctly. It is also quite annoying to carry on a lengthy conversation by occluding your trach. For me there was another element too. This is that no matter what, your hands cannot be perfectly clean. With a trach there is always added risk for infection. It is direct access to your lungs. Anyone with a trach has to be careful, but a person that is immunocompromised, such as I am, must be beyond careful. Other than the inconvenience finger occlusion presents, the infection risk is more of a concern in my opinion.

That leaves the passy-muir valve or PMV. For most people with trachs, the PMV is their life. With the PMV they are able to speak fairly normally. For some, it may take a short time to get used to it and adjust to it. For some reason I couldn't tolerate it. They'd put it on and I'd feel like I was suffocating. I couldn't get air in. My sats would drop and my heart rate would shoot up. I just couldn't tolerate it. Everyone here couldn't understand it. Why couldn't I tolerate it? They'd never had someone who truly couldn't tolerate it. On one particular session where I was having difficulty and telling the speech therapist again that I feel like I'm suffocating and can't get air in. She told me this wasn'tt possible because the PMV is made as a flap. It is secure at the middle, but not around the edges. As you breathe in, the flap opens to let air in. When we looked at my PMV, the flap was secure all the way around; it didn't open. Well, this would explain why I felt like I was suffocating - because I was. Give it to me to get a defective PMV. Really?... What are the odds? Well of course we switched PMVs, and lo and behold, it was okay. I could use it without difficulty. It still took time to get used to it but I didn't have the problems I had been having.

Reality is much different

When they first brought up the issue of getting a trach, I obviously had many concerns. One of the reasons why I had always been so adamant about not getting a trach was that I felt it would severely decrease my quality of life. I thought trached meant being vent-dependent in which I 'd be tied to tubes in a hospital with no real life. I'd just be existing, and to me, that was the equivalent to hell. I didn't want to exist. In my opinion, that wasn't a life. It certainly wasn't a quality of life. Yet, there I was sitting in the hospital on bi-pap 24/7. I was essentially tied to the machine. I could only go as far as the tube would allow. I was able to go to the bathroom, but that was about it. I couldn't be discharged in that condition, thus I was hospital-bound. This wasn't a quality of life. This was not how I wanted to live. Here I was existing and my greatest fear was being realized.

When I told the doctors that I would consider the idea of a trach, I considered that the life I was currently living without a trach was what I feared life would be. My doctors explained that they felt that this was my only option of having any type of quality of life. They did not know if a trach would help. A trach hadn't been used n this type of circumstances before, but they felt it was the best chance at a normal life. Many people live with trachs and live active, normal lives, they said. They go to work/school/whatever. They go shopping and live happy productive lives. Immediately after surgery I wouldn't be able to talk, but they'd give me a speaking valve and as soon as I was able to use the speaking valve, I'd be able to talk just as I had before the trach. Now I wasn't so naive to believe that things would be problem-free. I knew it wouldn't be a walk in the park, but there was the hope that I would have a good quality of life. My life would be at least as good as it had been before the trach, probably better. I'd breathe better, and thus be able to do more. I'd be able to do the things I loved.

While I appreciate the encouragement. I wish I had gotten a more realistic picture of how life with a trach would be. Part of it is that people don't understand. If they haven't had a trach and thus haven't experienced life with a trach, they can't truly understand. Even people who only have temporary trachs don't fully get it. That's because, yes, they are trached, but not for long. They may have the trach for a short time, either after an injury and the trach comes out when they recover., or people waiting for transplant and have it only until they get the transplant. It's much different when your trach is permanent and you will most likely have it for the rest of your life.

Learning to live with a trach is a process. It isn't as they said, you have surgery, you put on the valve, and voila you can talk again, just as you had before. They said that with the trach, I'd just go back to doing all the things I had done before the trach. The reality is that once you get a trach, you have to relearn everything. You have to relearned how to breathe. Breathing out of your neck is much different than your nose or mouth. When I first woke up from surgery, I panicked. I didn't know where I was. I was in extreme pain, and breathing was different. I kept trying to breathe out of my nose or mouth and couldn't get air in that way. It was weird to realize that now I would be breathing out of my neck. It was very strange to be able to breathe with my mouth and nose closed. You learn to breathe at rest and when standing or walking.

You have to relearn how to eat and drink. Chewing and swallowing is different. In normal people, the vocal chords help with eating and drinking. When you swallow the epiglottis closes to prevent food going into the lungs and prevents aspiration. It opens the esophagus so food can go down to you stomach. When you have a trach, this is different. There is no longer the flap that prevents food from going into the lungs. You have to learn how to swallow without having it go into your lungs. This can be a challenge.

Showering can be one of the most difficult things. My first shower, I nearly drowned myself. Of course I didn't sit facing the spray because then I was sure to get water in the trach. I didn't realize how careful you have to be, especially with washing your hair. If you wash you hair normally as you did before the trach, you get water in the trach. It seeps in under the trach collar and into the stoma and thus into your lungs. It takes special care to learn how to shower.

Talking is certainly not as they said. It isn't like you get the trach, pop on the passy-muir valve, and ta-da, back to talking like you did before. Talking for the most part comes completely naturally without effort to most people. We don't remember learning how to talk or a time when we couldn't talk. When I first woke up, I couldn't speak at all. Then they realized that the trach was too big to use the valve with. For two weeks between when I got the initial trach and the trach was downsized, I was unable to speak at all. Writing became my only method of communication. After the third trach surgery, I began to be able to talk even without any aid such as the pmv. It was amazing to hear my voice, but speaking took a lot of effort and was exhausting. I could only say 1-2 words. At first, I wasn't able to tolerate the pmv. Finally, about seven weeks since the trach was put in, I can use the pmv and my voice is clearer. However, in no way is my ability to speak like it was before the trach. Speaking is a conscious effort. My voice is different, and speaking takes a lot of effort.

Not only do I wish that I had had more information and a more realistic picture of what life with a trach is like and what to expect, I wish I had had more time to mourn the loss of my life. No one prepared me for the extreme coughing and what to do with the mucous plugs, or what to do when the trach gets clogged. I wish they'd told me about coughing up blood and trach care. I look back and I know my life will never be the same. My life will always be - before the trach, and - after the trach. I mourn the loss of my old life. I desperately miss being able to swim and go in water. But, I try to think about what I have gained. I am alive...

Rehab Day 1

First steps

 Today is the first day of rehab. I feel slightly disoriented and very overwhelmed. The therapists came in early this morning to introduce themselves and set up a time in which we could meet. It is a day of assessment and evaluation. For occupational therapy, I got washed up. It is a little embarrassing as my OT therapist is Chris, a man. It takes so much energy just to wash up, sapping my energy nearly completely. I am promised that tomorrow I can shower. Yay! :) This will be my first shower in nearly two weeks, since before going for surgery at Rockville Hospital.

Next I had speech therapy. My speech therapist, Nichole, is concerned about my swallowing and whether I am aspirating some food down into my lungs since sometimes what I am drinking comes out of the trach. Apparently this isn't supposed to happen, and not as cool as when it comes out your nose. lol. They are changing my diet to decrease the chances of this happening. Next week they will do a swallowing test. They will stick a camera up my nose and down my throat to see exactly what is happening when I eat. They have diagnosed me with vocal chord paralysis. If this is true and my vocal chords do not perform properly, this can cause aspiration. In healthy vocal chords, they close when you swallow, blocking the path of your trachea to your lungs and pushing food toward and down the esophagus. If my vocal chords aren't working correctly, they do not close when swallowing and thus food and drink can enter the lungs.

During speech therapy, we also evaluated where I am in regards to speaking. I speak rather well without any assitive aid. I talk around the trach. My voice is very breathy, but it is understandable. Speaking takes a lot of effort, and I am only able to speak for short periods of time before I am too tired. I can only speak 1-3 words at a time; however, I know with work and time this will improve. I am also able to occlude the trach with my finger to speak, but this is definitely not my preferred method. For one, it is a challenge to coordinate, when you inhale finger off and trach open, trach occluded to be able to speak. Another thing is this can be exhausting and I wouldn't want to carry on an entire conversation this way. In addition, there is the issue of infection. As clean as you can make your hands, there will always be some germs on them. By covering the trach with your finger, you are opening your body to numerous amounts of germs just wanting to attack your body.

Passy Muir Speaking Valve

The last mode of communication is using the passy muir valve, or speaking valve. This valve fits over the trach. It is small and round and has a screen. The way it's supposed to work is that it allows air to enter through the trach, but closes so that air goes over the vocal chords when you exhale, allowing for speech. Many people find this the gold standard. For me, it is not. I cannot tolerate the passy muir valve (pmv) at all. As I put it on, I feel as if my air has suddenly been cut off. When I attempt to make sound or talk, nothing comes out. Instead, I feel a great pressure building up behind the pmv and no way to  get it out. As it builds and builds, I feel as if I am suffocating. I feel like I can't breathe, causing my heart rate to go up and my o2 sats to drop. When I finally remove it, a whoosh of air comes out, releasing the pressure. If not careful, the pressure will cause the pmv to be ejected and flown across the room. For most trached patients, the pmv is their savior. Personally, I detest it. This doesn't mean that I will give up on it. I know that it is important to my life and my ability to communicate with others, but I really have a hard time with it. I can't ever imagine it being my favorite mode of communicating. Maybe it just takes time and practice to get used to it. I am able to talk without any aid, so maybe I'm not putting in as much effort as I should be. Yes, I can only say a few words at a time and it is exhausting, taking a lot of effort, but I am understandable. So in my opinion, the pmv is important, but it is not critical for me to be able to speak. Part of me wants to know if it is essential to use the pmv. If I work on breath control so that I can say more words at a time and for longer periods of time, building up my endurance, will I need to use the pmv or is it possible to speak effectively without it. If I practice various techniques that will help improve the sound of my voice and its volume, I think it might be. Right now my voice sounds hoarse and it is quiet.

Physical therapy is the area that I need to have the most progress. I have such weakness especially in my legs. I had experienced this a little bit in December when I had to get a cane to get around, but not to this extent. This is much more severe. I am unable to stand unassisted. Once in standing position, my legs begin to shake and the muscles eventually give up and I must sit. I am really unable to walk at all. This is extremely frustrating.

It still baffles my mind. How did I get this weak? Was it the accumulation of three major surgeries within two weeks, or two surgeries within four days? Was it the effect of bleeding constantly and being operated on for over two hours? Or is it something else. Could it be a virus? I have had friends who got a nervous system virus while in the hospital and were unable to walk for awhile when they got out. They had to do physical therapy and gain their strength back. Or is it another disease process. Is it Pompe or a Mitochondrial disorder? I was supposed to go for a muscle biopsy to check this out and determine if I had Pompe or a Mitochondrial disorder before the trach happened, but with all the drama of needing and getting a trach, I had to cancel the appointment. Guess it'll be something I have to reschedule when I get home and a bit more stable.

They had a team meeting about me. The average stay here is about two weeks, but it looks like I will have a slightly longer time. They estimate four weeks with a tentative date of Austust 31st. I have a long ways to go. I must be completely independent by the time that I am ready for discharge. Dad will not provide support, so I must be able to cook, care for myself, do laundry, walk, drive, ect. They expect that that is possible. By the time I am discharged, they expect that I will be able to be independent. I may need assistive aids such as a walker or cane, but I will be able to do everything myself.

All of the staff are good. They are extremely knowledgeable and I trust them to help me get back to where I was. There is a transitional apartment. This is an apartment that is on the unit. It is set up to be a true apartment. You spend the night there. This assures them that the patient is truly ready for discharge and capable of doing what they need to in the community and their own home. There is a pull cord that rings to the nurses station and a nurse can come if you need them. This makes me feel better because I know that I can be sure that I am ready to go home, but still have the support of the nurses if need be.

Trach Surgery

Tuesday I went in to have my trach downsized from an 8 to a 6. Supposed to be a simple thing, but I'm a true zebra and whatever is supposed to be simple is not. First of all, I now understand HoJo's anxiety when she had her bone marrow biopsy and she couldn't have her passy meir valve. With me since I can't yet use the passy meir valve, I have a writing board and pen. You write on the board (kind of like etch-a-scetch) and press a button and it erases it. Anyway this is my only means of communicating currently. I obviously couldn't have this in surgery and this made me very nervous because I had no way of communicating with anyone at all. At one time, just before they put me out, they had the trach mask on but it wasn't on right or something was blocking the trach, or something, but I couldn't breathe right. Well the problem was my arms and hands were all wrapped in for surgery so I didn't fall off the table and so I couldn't adjust it myself, and I couldn't get the nurses' attention or the anesthesiologist. I started freaking out and finally they figured out what was up and fixed it, but for a moment it was quite scary.

I never deal with anesthesia well, not even since birth. My first surgery was at 7 months. They gave me anesthesia then and they give it to me now and it never fails, I wake up crying every time. After the initial trach surgery I was extremely disoriented. I didn't know that surgery was over or had even begun. I was on the vent and because I was so disoriented I fought the machine terribly. I finally calmed down once I figured out where I was and what was going on. This time I asked the nurses to make sure they told me where I was and that surgery was over so that I wouldn't be disoriented after. This helped. But I was told that there wouldn't be any pain. Well I knew this meant I would have some pain, but nothing is pain free and doctors don't know what they are talking about. But oh, my God, I was in extreme pain. 2mg dilaudid, didn't touch it. Finally after another 2mg it was starting to be under control. He had to use a lot of stitches because apparently there was a lot of bleeding. So that is one source of pain. I also had a lot of swelling and so initially couldn't swallow even water. They gave me sips of water and I ended up choking. I also woke up with horrible coughing. I kept coughing and coughing, these horrible whole body coughs where you can't catch your breath at the end. You feel like you're coughing your insides out. This of course hurt like hell and I was coughing up massive amounts of blood - totally not cool. Every breath I took, I ended up having the horrible coughing fits. The only thing to avoid them was to not breathe, and that wasn't exactly a legitimate option. So, yeah, after surgery was not fun.

I had so much difficulty with my breathing and it was getting to be 5 o'clock, when the nurses want to go home. Supposedly they had no way to directly admit me so they sent me to the ER. Well the ER was packed, but thankfully I got right in, being a day surgery patient and all and having difficulty breathing. But once in the room, that was a different story. I had the same doctor I had last week when I had to go in with the bleeding. He is a real asshole. Thinks he knows everything, but in truth knows nothing. He's new and honestly that just makes everything worse. They didn't even call my pulmonologist. Gave me some pain medication and some ativan and that's it. Didn't listen to my breathing. Didn't pay attention to the fact that my sats were bouncing from 79% to 90%. Yes, the 90% is ok, but the 79% not so much. We found out I had a fever before surgery of 100.8. This is extremely high for me because 1) my normal temp is 96.5 2) I never run a fever even when sick, so if I do, it's quite alarming. Based on this, we knew something was amiss. After surgery my temp had gone up to 101.6. Definitely not good. The doctor didn't even draw blood. He did do a chest xray, which came back clean, but then a chest xray is only going to show pneumonia, not much else. He determined that this was just anxiety and I just should go home. So home I went. I didn't actually get home until midnight. It was a long day and they never resolved my difficulty breathing.

Things are Never Easy

I was discharged from the hospital a week after having the trach placed. So I was discharged on last Thursday. Since then, life has been a collasal horrible disaster. They basically discharged me without any proper discharge plan. They were supposed to downsize the trach to a 6 so that I could use the passy meir valve and talk. Remember this was supposed to make the quality of my life better. Well, the surgeon decided that the trach was too new and he did not want to downsize the trach for another week. Well we will skip ahead in time to today when we called and guess what.... the doctor is on vacation this week. So is my trach going to be downsized so that I can use the passy meir valve this week? That would be a giant no because the doctor is on vacation. Can I scream? Oh wait, I have no voice! I can't even do that. And while I was told that this was a simple office procedure, guess what I find out. It is day surgery at the very least. They will bring me in, change the trach and it may be a few hours or I may need to stay over. Let's count on me needing to stay over because that is how my life is. And honestly I just want to be sure I can use the passy meir valve and talk. Because this not being able to communicate sucks and is just not fair. Just sayin'

So back to the story. The company that previously handled all my o2 needs does not do trach care or anything with trachs. Ok, understandable. Trachs take special consideration and are more complicated than plain just o2 needs. So one would think before being discharged from the hospital they would set me up with the o2 needs and humidification that I need with a trach. Also, one would think they would provide me with what I need for trach care. For those who don't know about trachs, they obviously have to be cleaned and taken care of. Well, none of this was taken care of. I was sent home without any humidification for my o2. This caused me to get very dry and that caused other problems. Also, I was sent home with 2 trach cleaning care kits when discharged. Since PromptCare, my previous o2 company could not provide my needs, it was set up that Apria would take over. Well Apria never got the proper authorization, scripts with specific o2 needs, ect. and so they never set things up. Anyway.... VNA came out Friday and were appalled that I basically had nothing - o2 wasn't set up and had no trach care kits. It was also determined that I should've been sent to rehab not directly home since I have not learned how to live with a trach, nor care for myself with a trach, and after having the trach put in, I'm sufficiently weak and really can't do much. So, yes, I need rehab. We were told to go back to the hospital and they would admit me and arrange for rehab. Well I never actually made it into the ER. I sat in the waiting room for several hours while the charge nurse made some phone calls and tried to arrange for the o2 needs with Apria. We all know that it is near impossible to be admitted for rehab on a Friday afternoon at 2pm. So we were assured that Apria was going to come and by 7pm when they hadn't, we were back on the phone trying to get the humidification I needed to get through the weekend, since nothing was going to be done until Monday. In the end, we went to the ER and picked up some humidification bottles to attach to the liquid tanks. We rolled one liquid tank into my room and attached the humidification bottle attached to the trach mask. This gives me the ability to move about a foot and a half. Basically I'm stuck in my room. So much for making my life more mobile.

On to Saturday. The VNA nurse comes again. At this point I have used all the trach care kits given to me because my trach keeps getting clogged with huge blood clots that require me to take the trach tube out and clean it because I can't breath through these clots. The nurse calls the dr that put it in (yes the doctor that is currently on vacation) and he says to go to the ER. So off to the ER we go. Also decide to mention to the ER that despite 80mg of lasix my feet are so swollen with severe edema that I can't walk and nothing fits on my feet. Oh, but does the ER want to do anything? nope. They give us a few more supplies and tell us that after talking to Dr. Constantino (the dr that sent us to the ER) that coughing up blood is normal for a new trach. (then whey did he send us to the ER?) They did do a chest xray and that is all fine. So we left with one more trach kit, some ampules of saline to squirt in my trach, and a few more supplies  to get through the weekend. Apria still has not come with o2 or supplies.

So we get through Sunday. I sleep and watch tv because there isn't much else I can do. It is now Monday. We try to get me into rehab. The VNA and my pcp are trying to work together. There is a rehab facility in town that does pulmonary rehab that would be perfect. Guess what? Medicaid won't cover skilled nursing care. haha. Life is such a collasal joke. I can't get into rehab because it isn't covered by insurance. Did I mention that Apria still hasn't come. The pulmonologist is supposed to be signing and faxing over orders so they can deliver what I need, but yet it still hasn't been done. We have been making phone calls all day. My pcp's suggestion was to go back to the ER, to which we siad no because they aren't even going to treat me but rather they will just send me home again, so what is the point of sitting there for hours. Now it is 4 o'clock and despite countless calls made by my mom and VNA since I have no voice, still no change. VNA is trying to get the pulmo to direct admit me and finally do the job they should've done originally. Yes, some of my doctors suck. Some of them are great and are trying their best to move mountains and get things done. My VNA nurse is an angel and really couldn't do more than she is.