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