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