Adventures with IgG

One of the reasons that I ended up here rather than at one of the other facilities was my Igg infusions. No one had experience with giving the Igg. They couldn't accept my Igg that I got from home because there were policies preventing patients from bringing medication into the facility from home. Because of the cost, they couldn't get it through pharmacy. So, even though I had the medication, everything needed to give an infusion, and even an infusion nurse who could come and give it, it wasn't possible to get it there. Here, they arranged it so that I would go up to Baystate to get my infusions once a week. While it seems that this should be an easy thing, things are never easy, and never without drama.

My appointment was at Baystate for 10 o'clock. The ambulance came at 9, and we were there in plenty of time. I had to take an ambulance since I was a patient going from one facility to another. We got to Baystate and after getting the run-around of where we were actually supposed to go, we got me settled. We got to the first floor, and were told to go to the 8th floor, then when we got there, they directed us back to the first floor, ect, ect. It was quite an ordeal. They get me settled on the stretch, but the stretcher is not in a bay with wall o2. There is only a portable tank underneath. Well this is fine, but of course, portable tanks go quite quickly when you're on 6L. Finally, they found a bay with an o2 hook-up. Why it was so difficult to find a place that had wall o2, I don't know. It would seem obtaining o2 in a hospital shouldn't be difficult. But then nothing is ever as it should be.

My appointment was for 10, but in actuality, they didn't even give me my pre-meds until 1. For some unknown reason the infusion took forever. At home the longest it's taken is 5 hours. I didn't finish until 9:30 (8 1/2 hours after starting).The day nurses left at ~6:30. So they had me moved upstairs to the observation unit. This is the unit that houses the patients that don't necessarily need to be admitted, but they want to watch them overnight to see how they are and make sure they don't need to be admitted. This is fine. I finish my infusion and they call for an ambulance.

As the ambulance comes, I need to use the restroom. The problem - the bathroom in the room isn't handicap accessible. I can't get a wheelchair in there. Well, ok. I then ask the nurse if I could use a handicap access bathroom on the floor. For sure, they have a visitor's bathroom and typically, those have to be handicap accessible. Though what happens if they have a handicapped patient who needs to use a wheelchair, I don't know. Well I am told that there isn't a handicap bathroom on the floor. What? No handicap bathroom? This is a hospital is it not? They didn't figure they might need a bathroom that was handicap accessbile and able to fit a wheelchair? The nurse then asks me if I want to use a bedpan. No, I don't wnat to use a bedpan. I want to use the bathroom! There's no reason for me to have to use a bedpan. I decide that I really have no choice but to wait until we get back to Mount Siani.

In the ambulance, my trach gets clogged with a mucous plug. There is nothing to clean it with and I can't breathe with it clogged. This isn't an emergency because being smart, I brought my extra trach just in case. You should always have an extra in case the trach falls out or whatever. So I open the extra trach, put the clean inner cannula in, and take out the clogged one. I don't want to just put the clogged one in the box, so the EMT offers me a glove. I put it inside the glove and ask him to put it in the box. I can clean it when I get back. No problem. Well, he didn't put it back in the box, but rather, he threw it out. Yes, he threw it out. It's not like that was important or needed. It only was part of my trach.

The drama continued as the EMTs got lost in Hartford. They didn't know how to get to Mount Sinai. Today this shouldn't be too big of a problem. Plug in the address into the GPS and voila. Nope, no GPS. Perhaps they should've referred to a map, or called dispatch to get directions, but they did none of these things. Instead, they pulled over and asked a random person on the street for directions. So, here we are in Hartford, at night, and they were pulling over to ask random people how to get to Mount Sinai. I have to wonder if they didn't secretly have a death wish. Thank goodness all was okay. Eventually they found it. I got back at 10 pm, 13 hours after I left. An infusion, which we expected to take up most of the day, but to be back by dinner, took all day and then some. This was supposed to be my "day off" from therapy. Though it wasn't much of a day off.

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...

A Choice

People have asked me, if I made the right choice. They ask, if I had to do it over again, would I still choose the trach. To answer if I would do this again, would I still choose the trach, I don't know... I would hate to say no, because to say no is to accept death. And this is exactly what I was told. Had I refused the trach, they weren't sure exactly how much time I'd have, but any time I would have would be limited. However, if this is life with a trach, I'm not sure I want it. You can't just go by length of life, but by quality. Am I or will I be able to do the things I want to do? During the time from the initial trach and going to rehab, I wished I hadn't done this, that instead I had accepted death and gone on. I was basically confined to my room because I needed to be there to be on humidified o2. I couldn't really go anywhere or do much of anything. It was torture. That was not how I wanted to live my life. But now, being in rehab and learning how to "live" with a trach, live being the key word, I don't know. I think things have more of a possibility of returning to life.

When people ask me about my "choice", I get angry. This wasn't really a choice per se. A choice is choosing hot dogs versus hamburgers, choosing to go to the beach instead of the mountains, choosing a necklace over earrings. Before, I never considered a trach. Trachs have always been a no-no for me. We all have things that we are willing to tolerate in regards to medical procedures, and there are things that we say "no way." A trach has been that for me. I knew that some day I'd be forced to consider getting a trach, but it has always been a "no." I didn't want a trach. I didn't want to live like that. To me it symbolized the beginning of the end. I felt it would change my quality of life and I didn't want that. So long as I could think and do all the things I do now, then it was ok; however, the moment that I became compromised and had to have a tube to breathe, I didn't want it. We are all going to die some day. There is a point at which we have to accept that and stop fighting it. I didn't want to be alive just to be alive. I wanted to have a life. I wasn't and am not afraid of dying.

Back in March, the pulmonologist suggested a tracheostomy to help me breathe. I was adamantly against it. No way, no how. I would not even consider it. When he mentioned it, I said no. He tried to open discussion with me, but I adamantly refused, telling him I'd rather die first. The second time was similar to the first, except I didn't even give him the courtesy of saying no. I just changed the topic. Wouldn't discuss it at all. This time, it wasn't just the pulmonologist, but also his PA. The reason I actually began to consider considering it, at least I let her begin talking to me about it, was my circumstances had changed. I was on bi-pap and having to wear it 24/7. Though they had attempted to wean me off of it, they had had no success. I was only able to come off to go to the bathroom. So I was able to move only as far as the bi-pap tubing would allow. I knew I couldn't go home on 24/7 bi-pap. The mask itself was causing the skin around it on my face to be irritated and start to disintegrate. I knew that I couldn't stay in the hospital indefinitely, nor would I want to. I knew that they were right and that if I wanted to live, I would have to get a trach. I could refuse to let them do it, but to do so would mean that I was willing to die, and I wasn't ready to die. So although it went against all I had believed in before, and though I had always said the one thing I'd never do was get a trach, I knew that really it was my only option. It wasn't a choice in terms of choose this or that. It was agree to allow them to do this procedure in hopes of prolonging my life and giving me a quality of life versus accepting death. So did I make the right "choice", well in terms of did I choose to live versus the other option, which is dying. No, this is not easy. It isn't exactly the way they said it would be, but I am alive. I will be able to go home and hopefully I can pretty much return to my life. No, I wouldn't have chosen this if there had been any other option, but had there been any other option, my pulmonologist wouldn't have suggested it. They don't just put trachs in people who don't absolutely need them. Even with the trach, they were leery because they didn't know if it would work or help. There had been no precedent for a patient in my situation receiving a trach. I do know that this was their last chance at giving me somewhat of a life. So to answer, "did I make the right choice". Yes, I chose life, and that is the right choice for me for now.

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.

Rehab

After the third trach surgery, I woke up tremendously weak. It was as if my body had decided that enough is enough. I could not even get to the commode placed next to my bed without help. The original plan had been that I'd be in ICU to be monitored. I was kept for the weekend, and supposed to be discharged on Monday. When Monday came, I knew I wasn't ready to be discharged. I still needed extreme help with even simple tasks such as standing or getting to the commode next to the bed. The week before the second surgery, where the trach was downsized, was the worst. I was sent home though I shouldn't have been. I was weak and unprepared. The proper oxygen hadn't been set up. I didn't have trach supplies. I was basically confined to my room. This is not the life I had planned nor wanted. They promised that with a trach, my quality of life would improve. I would do the same things I did before the trach. Nothing could be further from the truth. Really I needed rehab to get stronger and learn how to live with a trach. When you first get oxygen, you have to learn how to live with it. You learn how to breathe. You get used to the tubing and carrying it with you. You learn about the machines that take over your house and how to fill portable bottles. You learn how to manage the oxygen when you go out. Well, it's similar when you get a trach. You must learn how to live with it.

It was said that I needed rehab. The problem is that once you leave the hospital, it is much harder to get in. When Monday came I told the discharge coordinator about my struggles to get into rehab. She was hopeful that she could get me in with no problems. Of course, with me, nothing is that easy. They got the insurance worked out, but the infusions were a problem. It was too expensive for them to pay for my Igg. I offered the use of mine since I get Igg supplies and meds for home infusions each month; it wouldn't be a problem to bring them in. However, there was a policy not allowing patients to bring in meds from home. It went on for days, trying to make it work. If we couldn't get it to work, then what do we do? I wasn't able to go home in my weakened state. I'd be unable to get in the house, nor get around the house, as would be necessary.

Finally, they tried Mount Sinai, which is an acute rehab facility. What is the difference? The reason the social worker had first tried to get me into Fox Hill was because it had pulmonary rehab. Mount Sinai does not. Fox Hill, however, is a sub-acute rehab facility, and like most sub-acute rehab facilities, it is part of a nursing home. Therapy is less intensive. A lot of the clientele is older people needing to gain strength especially after a fall such as a broken hip, or stroke. Mount Sinai on the other hand, is an acute rehab facility and is associated with Saint Francis Hospital. It is a hospital in itself with medical type units. Hospital rooms with jacks for oxygen set-up and hospital beds. They are able to take more medically complicated patients. Mainly, they treat patients recovering from an accident or brain trauma. They are capable of dealing with trachs and IVs. Thus, they were better suited for the care that I need. Rather than 1-2 hours of therapy a few days a week, here I will have therapy from 9 AM - 2 PM with a break for lunch, every day, six days a week. Patients get a day off from therapy. For most patients this is one day on the weekend. For me, since my ivig is nearly an all-day event, the day of my ivig will be my day off. I will have therapy both days on the weekend to make up for this.

Back to my story... I met with the case manager from Mount Sinai, and things seemed to be very positive. She expected me to be able to be admitted if not that day, the next; however, once again, I knew this too good to be true. The problem was my Igg infusions, again. They couldn't order it from pharmacy because the pharmacy didn't carry it in their formulary. I told them that I could bring in the supplies and meds needed; however, their nurses weren't qualified to give it. I could have Kathy, my infusion nurse come out and administer it, but this was against their policy. They couldn't have a nurse who wasn't part of their staff administer it. So once again, we were in the same position as we had been with Fox Hill. Going home was not an option. I got to the point that I said that if absolutely necessary, I would give up my infusions for the time I was in rehab. I knew it would be a maximum of 30 days because insurance would only cover for 30 days of rehab treatment. Though obviously not an ideal solution, going to rehab was more important. Without going to rehab I was unable to be home and return to my life. I was too weak to get in the house by myself. Once in the house, I couldn't walk, so getting myself to the bathroom and around the house wouldn't be possible. After much thought, they suggested having me going to Manchester Hospital to the infusion suite to get my infusion there. This would get around all of this bureaucracy and red tape. I would go to the hospital and get my infusion, just as I would if going to a doctor's appointment. I would get my infusion and then be able to return to rehab after. This seemed like an ideal solution. It was days of uncertainty and frustration. Everything is run by bureaucratic rules and regulations, which truly do nothing but prevent patients from getting the care they need and deserve. You have to jump through hoops and find ways around them just to get what you need. Finally, they were able to arrange it so that I would go up to Baystate to get my infusions once a week. To me this seems ridiculous since they now pay for an ambulance ride to and from there; they pay for the infusion suite and nursing care; and they pay for the Igg and medications. While had they done it here, they would have no additional charges. But all that really matters is that I can go to rehab and I can get my Igg infusions while there.

Though it took so long to get me here, I am proud of myself for being persistent, not just letting them bully me into submission, and not letting them send me home before I was ready, as they had done before. This is a dedicated rehab facility. The other patients are around my age. The oldest patient I have seen is ~60ish. It is very intense. I have ~5-6 hours of therapy 6 days per week. I have speech therapy, occupational therapy, and of course, physical therapy. All my therapists are extremely knowledgeable and encouraging. God works in mysterious ways.

Learning how to stand with PT Laura

Rehab - Here I go

Finally got the news I have been desperately waiting for. I am going to Mount Sinai. They just came in and said that I will be going tonight. I am excited. Finally I will start the next phase in which I get stronger to be able to go home and return to my usual activities. As happy as I am to finally be going to rehab, it is also quite scary. RGH has almost become my home. I know the staff. I have a set routine. It is familiar. I have never been to rehab before. I don't even know what it will be like, what I will do. It's all very overwhelming. There isn't time to process it. The case manager came to say I would be going at lunch time. I left RGH for Mount Sinai at 7:00 PM. I pray that this will be good for me and with the help of rehab I will get stronger and able to return to my life.

The wheelchair van showed up at 7:00 PM to take me to Mount Sinai. I had the belongings I would need. Mom had packed clothes and things I may need while there. As I entered the van and waved to the nurses and aids, I mourned the loss of them, but realized it is not the last time I will see them. Logically I know that at some point in the future, I will get an infection or something and need the hospital. I know that I will form relationships with the new nurses. Yet, I am overwhelmed  by fear. Fear of leaving. Fear of change. I have a ball of fear sitting in my stomach.

As we drive over, I contemplate all the changes in my life. How many institutions have I gone to in this exact way? I remember the first time in which I was sent to Elmcrest. I had the same ball of anxiety and fear in my stomach, wanting to run and hide. I remember the door slamming shut and knowing that this was it.When we got here, we are directed to North 4. The unit is locked. They have to call and someone on the unit will allow them to come through the doors. A key card or combination code is required to get in or out. I freaked out a little bit. What have I gotten myself into? A locked unit? No one told me about this. This was not part of the plan. Why would they lock a unit for rehab patients? We can't walk even short distances. We need help going from bed to chair. Certainly no one is in a condition to be leaving the unit. Even though I am absolutely terrified, I am excited too. I am now settled into bed. A nurse came in and did the usual intake. Tomorrow I will meet all my therapists, have evaluations by speech therapy, occupational therapy, and physical therapy. I am most nervous about speech therapy. I can say a few words at a time by talking over the trach tube, but this is the limited extent of my ability to speak. I am anxious to begin working and learning how to speak again. I feel very blessed that I have been given the opportunity to come here and get stronger. This is what I fought and advocated for. I am proud of myself for not giving in. One day at a time. Slow and steady wins the race.

Just arrived at Mount Sinai

Trach Surgery. Time to throw away the plan...

Tuesday I had surgery to put in a smaller trach. Well, I had a lot of problems with bleeding and something that was obstructing my airway, so the doctor decided the best thing would be to do a bronchoscopy, to take a look and see what was going. on. For this, the plan was to put me to sleep, do the procedure, and fix whatever was going on. I was quite nervous as waking up from the previous surgery was a less than stellar experience. After surgery, according to the plan, I would go to the PACU and after I woke up, I'd go home. Things didn't go exactly as planned. Instead of waking in the PACU as was planned, I woke up in the ICU. I don't honestly know what went on, but my doctor decided that he wanted me to stay in the hospital for observation. I guess he did a lot of manipulation of the trach while in surgery. There was also a lot of bleeding. He cauterized the blood vessels that were bleeding, however, he said it doesn't seem like I heal properly. Every time he went to cauterize the blood vessel, if he then touched it, it would start bleeding again. He is not exactly sure why this is occurring, but this is what is causing the bleeding and preventing the site from healing properly. He thinks it may be because of the prednisone, but I don't believe this theory. I doubt it for a few reasons: one, I've been on long-term prednisone before and not had this type of effects; two, I'm on only 10mg of prednisne, which isn't a really high dose; three, I had this bleeding problem before I started the prednisone. Before surgery he had me go for blood work. He tested my  PTT, which tests the time it takes for your blood to clot, hemoglobin, and hematorcrit. Interestingly, my PTT was normal. My hemoglobin and hematocrit were low. Having my hemoglobin and hematocrit to be low, was not surprising since I have been bleeding for over 3 weeks; however it was surprising to have my PTT to be normal; it would be expected that all this bleeding would be because my blood was not clotting. If this were true, my PTT would be low. The doctor also said that the obstruction was caused by severe inflammation.

With all the bleeding and everything else that occurred, he wanted to keep me overnight where I could be closely monitored and observed. I had a LOT of pain, more than the original trach surgery, which wasn't expected since no incisions had been made. The doctor explained that this was due to the fact that he did a lot of manipulation. I also wasn't able to swallow because of all the swelling. The first day was extremely hard because I was in such extreme pain and quite out of it. Today the pain was manageable and I was able to eat normally. I had a lot of bleeding the first day, he had used a special type of gauze around the trach site, which causes blood to clot. It seems to be helping since I am not coughing up as much blood, and when I clean the trach there is less blood in it.

The original plan was to stay over the weekend and be discharged today (Monday), but as I said before plans often get thrown out the window. I mentioned to the nurse that we were trying to get me into rehab, but had not been successful because of insurance. The discharge coordinator said that she didn't see a problem. I will be going to Fox Hill, a rehab facility, either tomorrow or Wednesday, depending on when they have a bed. I will get my IVIg tomorrow. I am somewhat hopeful, but I'll believe it when I see it. We'll see...