Because I am a special education teacher, I find it easy to articulate Kelly’s needs and navigate the system. What about the parents or caregivers who don’t know how…….

Day #1 (July 2nd, 6PM)

Settling onto the plush leather couch, I asked Susan, my sister, to bring me a glass of chardonnay while I watched Channel 3 news. It had been a long day attending to my father's every need since it had been one of the "rougher days." A phone call from my husband, Carl came and I explained to him that I'd be home around 7:00PM. While talking, a phone beep came on alerting me to another call coming through from an unknown caller. The call came from Vancouver, Canada, as Aileen, Kelly's care home manager called me to discuss Kelly's infection that I had no prior knowledge of. She explained that her nurse had phoned and that Kelly would need to see a doctor the next day, wanting to know if I'd be in a position to take her. I agreed to pick her up that evening and take her to urgent care to get antibiotic treatment that night, so instead of relaxing, I was on a journey that would last exactly eight and a half days. Apparently the infection became visible when Kelly got home from her day program, "Family Affair Bridges" in Elk Grove. At 3:00PM the care providers noticed her left leg was swelling. On the way, I phoned Kelly's primary care physician, Dr. Fenton, and spoke with a doctor on call. She felt that urgent care would suffice for the infection that I described without seeing it yet. I was not prepared for what I saw when Myrna opened the front door as I was poised to ring the bell.

(6:45PM)

I saw my 24-year-old daughter crawling on the floor since she couldn't walk, trying to reach for me crying, "Mommy, the mommy" The sight of her left leg caused me to stifle a scream and gagging reaction. Her left shin area and foot were swollen three times their normal size and the infection looked like a third degree burn, with a cyst the size of a baseball coming out close to her ankle. I instantly thought of a golf official I'd seen at Ancil Hoffman Park with elephantitis. I knew immediately that this was no urgent care situation and headed immediately to the UC Davis Emergency Room, since her primary care physician was a UC Davis doctor. Caregivers helped Kelly to walk to my Avalon and I was grateful that I chose this roomy vehicle to transport Kelly. Thankfully, because I had my cell phone charged, Kelly's step-father met us in front of the ER Center with a wheelchair around 7:00PM. By-standers couldn't stop looking at the projection coming out of her ankle, so third-world looking, as we positioned her into the wheelchair.

(7:15PM)

We happened to get into a line for triage and were taken in early because the hospital staff needed her wheel chair. Gaining access into triage early because of the wheelchair, the nurse requested a bed for Kelly in the hallway, apparently recognizing the infection as very serious, possibly the flesh eating bacteria that can eat straight through flesh before affecting the bone. Unfortunately, my husband was asked to leave the area because only one adult could stay with Kelly. This would mean that I would not even have a bathroom break since I wouldn't be able to leave Kelly's side. Kelly was ignored for several hours until I suggested quite firmly that someone needed to take her temperature since she was shaking. Her temperature was 102 and climbing as we were rolled past the patients that were talking about their drug addictions and the prisoner from Folsom with his three armed guards. They were all just a blur to me. My focus was Kelly and what would happen to her and the leg which was changing by the minute. The baseball sized cyst was now the size of a cantaloupe.

(10:00PM)

I guess we were still in triage; but from the instant we made it into our own curtained-off space, a couple of surgical doctors came to view the leg. They mentioned something about a possible surgery and at this point I knew I needed my husband to hear all of this. I asked them to sit with Kelly while I summoned Carl from the ER waiting room. We had trouble getting back to Kelly; but finally persuaded the triage nurses to let us in. Thankfully, Kelly was partially delirious because of the fever and wasn't trying to climb off the bed. We were informed that Dr. Scherer was the surgeon that was available that night and that they would confer with her. I kept thinking to myself, 'this really can't be happening .... her life has already been too hard. Surely, surgery won't be necessary. '

Kelly's nurse placed her on three different antibiotics. I thanked God that he was able to find a vein easily without poking all around. Kelly has tiny veins that are difficult to find. So far Kelly was doing fine, allowing the staff to do their jobs. I knew it would be a long couple of days and asked Carl to get me something to eat and some water to drink. This time he got back in to Kelly's room easily. The triage worker knew him by now.

Day #2, July 3rd (1:00AM)

Kelly went in to surgery within a couple of hours. The surgical team promised that they'd take care of her and if anything needed to be discussed that we should wait in a certain area, especially for families of patients undergoing surgery. Before the surgery, though, I was asked to sign a form that had something scribbled about possible loss of limb. Numbly I questioned it and a quick reply like "very unlikely" was what I processed. I don't think I was able to deal with a possible leg loss at this point. Carl was still with me and encouraged me to go to the cafeteria for a bite to eat. Although I wasn't hungry, I forced myself to eat a yogurt and fruit salad. I knew I would need lots of energy for Kelly and myself. The guy at the register remarked that I was surrounded by angels since my charge was $4.44. This seemed perfectly natural to me since I had prayed that Kelly and I were surrounded by angels while driving to the hospital. Carl thought the whole thing curious, encouraging me to keep the receipt. We went back to the waiting room and within minutes the surgeon, Dr. Scherer came walking in to the waiting room with a smile on her face.

(1:10AM)

I encouraged Carl to leave and get some sleep and I walked into the dark room of recovery and met Kelly's nurse, Attilis Bertalan. I learned he was from Bulgaria and just receiving citizenship. He too, embraced Kelly and me remarking on how I was an inspiration to him. It felt good to be recognized for my many sacrifices; but I was especially thrilled with the fact that he seemed to care a great deal about Kelly and me. He wondered why the charge nurse on level eight was taking so long to give Kelly a bed. We must have been in recovery for at least two hours, long enough to hear that the other patient in recovery was not going to make it. I overheard, even though the nurses were whispering, that he'd had brain surgery. I said a silent prayer for him, again remembering to include Kelly. It all seemed so dream-like. Kelly's dark eyes were beginning to open and she focused on me right away. The nurse covered while I used the toilet, still having a bug from Mexico that I couldn't seem to shake off. Attilis called floor 8 several times more, checking on the status of Kelly's bed, making it clear that she would need a sitter and special care since she was retarded and autistic, not your typical admit on floor 8 East. I over-heard him say something like he'd deal with that nurse again, if need be. His co-worker, a woman, rolled her eyes and agreed it was taking an awful lot of time and that something needed to be done about the nurse’s lack of compassion and understanding. I met the head nurse soon enough and was very sorry that Attilis, our advocate, was on his break and didn't take us there himself.

(3:30AM)

Our first introduction to the wing was confrontational as Crystal informed me that Kelly would not be getting a sitter even though the surgeon and nurse requested it. This was the first thing she said to me, in front of Kelly, the recovery nurse and the person sitting at the nurse's desk.

"Sitters are reserved for our suicidal patients" was my introduction to floor eight, even before Kelly was taken to her bed.

"We'll use restraints on your daughter if we need to. You'd better line up relatives to help you."

This was particularly difficult to hear since I'd lost my mom to breast cancer and she had always been my main support. I knew that Kelly's biological father was out of the picture and thought about calling his parents, who are 80 years old.

"Are you telling me that suicides are more important than autistic and developmentally delayed adults?”

"This is our policy and yes, they receive support first.” "Who are you?" I inquired.

"The nurse in charge of this floor."

'Great' I thought to myself, as tears slid down, 'I'm going to have to fight. .. Why can't things just go smoothly?'

Regaining my composure, I added,

"Kelly is very low functioning and will need support so that she doesn't pull her IV out or get out of bed.

In a way that's a suicide. She won't understand why she's here. Right now she's quiet and on morphine, but this will not continue to be the case. I'm just trying to make things easier for everyone. Is there a quieter placement for her?" I inquired since they had her right across from the nurse's station and her room mate liked to have her lights on all night as well as her television on very loud.

"No”, replied Crystal, without any time to process my request. I had noticed some empty rooms.

'She didn't hear a thing I said,’ I thought, as I collapsed into a chair by Kelly's bed for the remainder of the early morning hours. I must add that before he left, the recovery nurse jotted down some phone numbers for me to call in the morning. 'I'm too tired for a battle,' I thought, as I snuck over to the other patient's bedside and turned off her television. She was sound asleep but still had the TV blaring. I watched as the summer sun rose through dirty curtains. It was going to be a scorcher in Sacramento.

(5:30AM)

I must have dozed when all of a sudden bright lights were turned on as the nurse checked Kelly's vitals. Kelly was shocked into her new day without as much as a good morning or how are we today? Within minutes, the new floor charge nurse, Kevin, informed me again that there would be no sitters for Kelly and did I understand that sitters were reserved for suicide attempts? I explained that Kelly had spent a long period of time 11 years prior in the same hospital in pediatrics, and that I didn't want 4-point restraints used again. He said he was sorry; but that was the hospital's policy. I asked about Kelly's rights and was basically told that she had none and that it would be helpful if I called family members to help. I told him about my father under hospice care and there was very little response. I asked about a quiet room and he said he'd look into it, confirming that the patient next door had the right to keep her lights and TV on all night long. I explained how difficult that would be for Kelly and he said he was sorry and he'd try to get me a sleeper and a private room. I again asked if Kelly had the right to sleep without lights and the television on during the night and he reaffirmed with a "No."

'Hmmmm,' I thought to myself, planning to call patient relations later in the morning.

(7:30 AM)

I got Sarah on the phone explaining in detail what had transpired. She wanted to know if I wanted to file a formal complaint against Crystal. I responded, "No”, because I didn't want any possible retribution against Kelly. I really just wanted Sarah to know that Kelly was supposed to have a sitter and that I couldn't possibly be expected to stay around the clock. I also told her I had diarrhea and a sore throat starting. I told her about Kelly's hospitalization 11 years prior and the 4 point restraint, which almost killed her. I was encouraged to call Social Services and that unfortunately they couldn't do anything for me unless I wanted to complain about Crystal. I told Sarah I was just trying to be pro-active and make things easier for everyone, especially Kelly. She added, "Good luck.”

(7:35AM)

A sitter showed up! I informed her about Kelly and told her I was going home for some much needed rest. Kelly slept most of the day. I went back to the hospital, prepared to stay the night, but there was another sitter who would stay with Kelly throughout the night! I stayed with Kelly until she fell asleep and went home to my husband. Kelly was still heavily sedated and was given morphine to relieve any perceived pain while her incision was cleaned out. I was feeling happy that sitters were being provided after all and Kelly was in good hands. Everything was going perfectly. Someone had listened.

Day #3, July 4th (10:00AM)

The idea of the KellyFile evolves...

I wrote all kinds of information about Kelly and decided to pin them to the bulletin boards so that doctors and nurses would know that Kelly was developmentally disabled and low functioning. I also requested that they were patient, talk quietly and keep bright lights off. I also wrote Kelly's mental age, name and that she liked stuffed animals and to not take her giraffe away from her no matter what. Carl and I came to visit Kelly and bring her some treats for the 4th. There was a sitter with her and we were promptly told that Kelly had misbehaved and pulled her IV out. Kelly had no sitter from 11PM until 7:00AM. Had I known this, I would have spent the night with her because nighttime is especially scary for Kelly, like most young children. It is especially frightening because she was awakened all night long by strangers. Crystal had been the one to inform me about the IV. I thought to myself, 'I told you this would happen,' not desiring to battle with her again.

(8PM)

It was a call from Crystal informing me that Kelly had become difficult, had pooped in her pull-ups and that she would be placing her in restraints unless I could come to the hospital and sit with her throughout the night. I called right back and said I was on my way. She added that Kelly had been combative, whatever that meant. I made it a point to breathe deeply, drive carefully, not fall apart, or feel guilty for not spending the entire day with her. 'Stay calm' was my mantra. I also prayed to God to help me handle this calmly and again surround Kelly with angels.

(9PM)

As I walk in to Kelly's room I see a young girl sitting at Kelly's bedside. She informs me that she is called in emergencies and that Kelly tried to remove her pull-ups, after she defecated in them. Who wouldn't want to remove soiled clothing? She had also pulled out her IV and they had had a very difficult time finding a vein. The sitter I thought was staying all night had left at 7PM and Kelly had been left alone when she pooped and pulled the IV. She had no one there to comfort her or change her. I was informed that she had been very agitated and no one knew what to do. Calmly and slowly, I informed Kelly's night nurse, Roberta, that I had explained all of Kelly's needs to Crystal and to Kevin. Apparently neither of these nurses shared any of Kelly's information with anyone else. I informed Roberta that Kelly was supposed to have a sitter every moment she was in the hospital, that she was really only 17 months old, mentally. I wondered, 'How many times will I have to repeat myself and to how many nurses and doctors?' Roberta had the sense to ask,

(10:00PM)

Kelly and I settle in for a long night. Doctors come in around 3AM, waking us to check Kelly's blood pressure. It is dangerously low. She is awakened when the antibiotics are changed and when her vitals are taken. Finally we fall asleep only to be awakened by an overzealous 3rd year resident checking on her status. This will be another long day for Kelly and me. One of the surgical doctors mentions that Kelly was given way too much morphine the night before and wants her to have it only when her dressing is changed.

Day #4, July 5th, (5:35AM)

Kelly is initially awakened calmly by the 3rd year resident who wants to take a look at Kelly's incision and at the same time a frenzied phlebotomist comes in and abruptly starts prodding for veins with 5 vials to fill. She becomes annoyed because she is in a hurry; she looks over at me because I haven't jumped up to help her. I tell her to "calm down," and she retorts, "Are you talking to me or her?" (Pointing at Kelly) I say I'm talking to you and ask her to leave the room with her attitude. I tell her that Kelly's blood will be taken after breakfast and her morning meds. She mumbles something about doctor's orders and I tell her I'll deal with the doctors and she didn't need to worry.

(7:30am)

I am wondering why Kelly hasn't been given any of her morning medications since she is agitated by the constant flow of people in and out of her room. Instead of breakfast a very kind nurse comes in to get the much needed blood. Again, the training staff comes in to take a look at Kelly's incision, which is 3" long and cut down to the bone. I remind them that she needs morphine before they change her dressing. I am stunningly aware of how important it is for me to be there every second to advocate for Kelly; I realize that I'm actually training the staff and I will be as long as we're in this hospital. When the group comes back to clean the wound, I tell them that they should have some kind of training with this population. They are very polite and listen to everything I say, seemingly evidencing their desire to learn at a teaching hospital. They show a great deal of respect, which I appreciate. Finally, I give Kelly her morning medications, which is fine with Pam, her new nurse.

(12:30PM)

Kelly's paternal grandparents come to visit while I'm feeding her. She is happy to see them, smiling and appreciating the toys that they bring. She likes the beanie frog the most. They stay for about a half hour, leaving when Kelly says she needs to go poopy. Grandma Marilyn and I understand her. They leave and I attempt to sit Kelly on the commode. She immediately says, "I hurty', desiring to get off. She continues to say, "hurty" and I call for the nurse who gives her vicadin. Thanks be to God that vicadin helps.

(1:00PM)

I ask Kelly's nurse, Pam, if we can get Kelly a VCR so that she can watch some movies like 'Homeward Bound' or 'Tarzan.' I am told that that pediatrics have more need because they are children. I point out to her that Kelly is a child even though she is 24. Pam apparently searched high and low for a VCR and wasn't successful. Pam was very kind to Kelly especially when she understood that she was mentally 17 months old. I appreciated her efforts.

(1:15PM)

I am feeling more and more ill by the minute. My sore throat is a killer and I am barely able to swallow. I still have diarrhea. I finally think of calling Alta Regional Center, and asking them for a sitter. I tell them flat out, apologizing ahead of time for my language, "I'm tired of di..... around with the hospital, sorry, but I can't think of any better way to explain my frustration adequately without using that word." I'm talking directly to Kevin Simpson, knowing I need to go directly to someone who can say, "Yes, I can help you." If I called Kelly's officer, Stephen Richardson, he would have to go to Kevin, and that would waste time. I needed help immediately and I was fading fast. He said he would do what he could, asking if Kelly had a doctor's order for a sitter and I replied affirmatively. It looks like help would be on the way! The hospital staff offer two student nurses to sit with Kelly so I can go home and get some sleep. They can see that I am sick, very sick. I go home and shortly after Aileen comes in with some of her staff to visit Kelly.

(1:25PM)

Aileen shows up with two other women from the home. Kelly thinks they are there to take her home and starts crying. Aileen leaves around an hour later and Kelly is very agitated, trying to climb out of her bed. Both student nurses are trying to hold Kelly down when my sister, Susan, Kelly's aunt arrives.

I suggest that the psychiatric team communicate with Kelly’s private psychiatrist.

(2:30PM)

Susan tries to help Kelly relax by giving her sips of Jamba Juice. Kelly says, "I hurty" and Susan calls for the nurse. Kelly is given vicadin and is comfortable within an hour. The psychiatric team comes in with note taking materials, wanting to interview Susan before Kelly settles down. They ask questions like, "Has Kelly ever had a psychiatric break like this before? If so, when?" Susan calmly answers their questions as best as she can recall from Kelly's lengthy medical history noting a list of medications that she is highly allergic to; haldal was once given three times even though Kelly had a severe reaction to this drug the first time, causing her to permanently shuffle when she walks and trazadone which she is allergic to as well. Susan states the need for something for Kelly's increasing agitation; it now takes my sister and the two aides to keep her in her bed. My sister understands that Kelly is saying, "I hurty" in her rapid, hard to understand voice. My sister can't remember Kelly's psychiatrist's name, but they thank her for all of her information and they leave. Shortly later, one of them gives me a call, waking me up. I suggest they talk with Kelly's psychiatrist, Dr. Arnette. She agrees to talk with them and they decide that when Kelly is agitated she would be given extra seroquel.

(7PM)

I come in, packed and ready to stay with Kelly as long as she's in the hospital. I ask if she's gotten her 5:00 medications and am told that she doesn't get 5:00 medications. I tell the nurse that she is wrong, showing her the bubble packaged meds that come from the group home and the times they are administered. The nurse agrees that there's a problem, but says she can't do anything without a doctor's orders. I simply say, "Then call a doctor." I tell her that Kelly has been agitated because she's not getting her psychiatric meds at the correct times! The nurses are afraid of the doctors. I'm not.

(9PM)

The night nurse (a new one) comes in to give Kelly her nighttime meds plus her 5:00 meds. Kelly has a very difficult time keeping all of them down. She starts to throw up and cry. I explain the problem with the medications to the night nurse. This one grasps the situation immediately and asserts that she will discuss the matter with a doctor as soon as possible. I ask her that Kelly not be interrupted for vitals during the night and post all kinds of signs on the outside door requesting no blood draws and that people enter quietly and respectfully. I add that she is autistic and had a very difficult day.

Day #5, July 6th

(1:00 AM)

I am awakened by what sounds like a party from the room next door. There is very loud laughter and talking that seems to go on forever. I am grateful that Kelly is oblivious to all of this. I am informed by night nurses that they have already asked them to quiet down and that they have the right to talk. It's the 3 armed guards watching over the inmate from Folsom Prison. Since they were showing no signs of letting up, I am forced to walk over in my pajamas and ask them to quiet down. I explained that my daughter is next door and having trouble sleeping. They were very sorry and quieted down immediately. The only intrusion for the rest of the night were the squeaky tennis shoes as the technician adjusted Kelly's IV. Did the nurses really ask them to be quiet?

(7:00 AM)

Kelly gets her morning medications around 8:30 with breakfast. This time she does not throw up.

(9:00 AM)

I get a call from Aileen stating that she will be in to sit with Kelly throughout the night. I am delighted because she knows Kelly so well. Besides me and my sister, she is the only human being who knows if Kelly hurts and can understand everything that she says. I allow myself to feel the exhaustion because I know I will be in my own bed that night. I still have the sore throat and am acutely aware of every swallow I take. I stay with Kelly throughout the day.

(2:00 PM)

I get a call from Kelly’s Alta Regional Center officer, Stephen Richardson, who tells me he is faxing something that I need to sign before I can get a sitter that they plan to hire from Maxim. It is a request for medical documents that I sign and Pam faxes back. The power goes out at the regional office and Pam needs to send it once more. She is very kind. Stephen receives it by the end of the workweek. I will have a sitter; but I am not told when. I am still feeling comforted that help is on the way. Pam was great and I tell her so.

(5:30 PM)

Kelly has not received her 5PM medications and I can't believe it. I give them to her myself with Jell-o. She calms down and is ready for dinner when it arrives at 7:00. When the nurse learns that I gave her meds she is aggravated because I'm not supposed to do that. I again tell her that Kelly gets her meds three times a day: morning, 5PM and 9PM. I inform her that Aileen is coming in and will explain it all again. Unfortunately, Aileen arrives at 10:00PM and a new nurse is on shift. I ask Aileen to clear the whole thing up and this time a doctor is there and understands the misunderstanding. He confirms that Kelly will get her psychiatric meds on time, starting tomorrow. I also tell him that Kelly is constipated and he orders a suppository for the morning. I thank him as I leave the hospital to go home. I am very dizzy and tired as I drive to Carmichael. My husband is asleep but wakes up. He is glad to see me and is clearly worried because I look so bad.

Day #6, July 7th (10:00)

I open my eyes at 10:00 AM not believing how late it is. I feel shaky and still have a sore throat when Carl brings me a cup of coffee. He worries about Aileen and drives over to the hospital to relieve her while I struggle to get dressed. I call Aileen after the shower and she informs me that a sitter from Maxim showed up at 7:30 and that she took some time to train her before calling her husband to pick her up. I was relieved because Aileen was certain this woman knew how to deal with the autistic and developmentally delayed population. I call Carl with this new information and crawl back in bed thanking God. Maybe I would feel better, later.

(6PM)

I pack my things for another over-night stay with Kelly. Kelly had pooped several times that day and apparently was feeling better. I pick up some special treats at Whole Foods. Carl drops me off this time and we carry in an ice chest full of food. I've realized by now that I've eaten very little while attending Kelly's every need and sleeping any chance she did. If I want to get well I will need to eat. I'm told that Kelly got her 5:00 meds and she is relaxed, watching cartoons when we arrive. Dinner comes at 7 and I help her eat and also give her some special treats. Carl leaves at 8, promising to be back at 9AM with a Starbucks for me and a Jamba Juice for Kelly, her favorite, an "Orange Dream Machine.”

It works.

(9PM)

Kelly gets her nighttime meds. The nurse helps me change the bed sheets and we put new diapers on her so she can be as comfortable as possible. I make certain that I have plenty of supplies before I turn in. Kelly's diapers needed to be changed every 2 hours because of the large amounts of fluids from the IV. Every other night of Kelly's hospitalization, I changed Kelly's diapers with no assistance. I thank the cops next-door for being so quiet the night before so they'll remember to be quiet again. It works.

Day #7 (7AM)

Miraculously, Kelly and I sleep very well. We are awakened by Kelly's sitter and the doctor team. The team wants to change her dressing. I remind them that she needs pain medication before any dressing changes. She no longer has an IV, so they give her a vicadin and promise to come back later. Kelly gets her morning meds and breakfast at the same time. It's a promising day. A phlebotomist comes in to take blood and I tell her it's not necessary. I had already checked with the team earlier that morning.

(8:30AM)

Carl arrives early to pick me up. The team comes back to change Kelly's dressing. Carl is shocked to see the incision. He hadn't realized that it went all the way to the bone. Kelly has the same sitter as yesterday so Carl and I feel confident leaving her after giving her further instructions. I go home to sleep still feeling sick.

(6PM)

I pack my things again, filling the ice chest up with more snacks and bottled water. Carl and I take our own vehicles because he has an early, job-related trip to Vancouver, Canada. He stays with us until 8 PM. Kelly enjoys a cookie as we settle in for another night after watching some television. I change her sheets, diapers and go through the same routine we've had for nights. Her night nurse is Marceilla, who I come to believe is an angel. She is so patient, kind and understanding, just like Lora, another outstanding nurse. Both of these women went out of their way to make sure Kelly and I were as comfortable as possible. These are examples of unsung heroes in our midst.

(9PM)

Kelly gets her meds and as she settles to sleep she looks at me through the hospital bed slats to make sure I am there. I only see one brown eye focused intently on me and I am reminded of how she used to look at me when she was a tiny baby in her crib. I say, "I'm here, honey. I love you," and then turn out the lights. Kelly falls right asleep and I hear the chains next door. The prisoner must be using the bathroom. My mind drifts as I wonder what he did that was so bad that he had to be hobbled in chains, even with three armed guards. I also think of the possibility of Kelly and I being held hostage. I also think to myself, 'How could the staff ever even think of leaving Kelly alone in a place like this?' I decide to do something to change the situation when Kelly can go home. I stay awake for hours thinking of how to proceed with this idea that I am quickly formulating.

Day # 8, July 9th (6:00AM)

I pretend to be asleep as someone peeks into our room. Whoever it is respects and follows the notes posted on the door. I don't feel up to talking this morning and am tired of the hospital life. Kelly is sound asleep. We are left alone for the first time.

(7AM)

Our sitter from the regional center shows up. I whisper for her to get a cup of coffee and let Kelly sleep. She leaves and I get dressed.

(7:30AM)

The doctor-group shows up, takes a peek at Kelly's wound and announces that she can go home today. I am thrilled; but want to

know if the discharge planner has talked any of this over with Aileen. They say they will check into it and bring this up with the discharge planner, Leslie. I decide to stay so that I can help plan the discharge.

(11:00AM)

I am shown show to change Kelly's dressing. I ask to do it on my own the next time since I learn best by a "hands on" approach. I also ask who is going to train Aileen since Kelly lives with her. No one knows and this seems curious to me. I do a fine job changing the dressing later in the day with Marcelia's excellent support.

(12:00AM)

I called Aileen to see if she had heard anything from Leslie, the discharge planner. She had not heard a thing and didn't think Kelly could come home without some careful planning that would include an Alta Regional representative, and an exam from a physical therapist. At this point Kelly could not walk and had been in bed throughout our ordeal. I had to request the physical therapist evaluation.

(1 PM)

Leslie came by to talk about Kelly being discharged and I explain that Kelly is an Alta client and that certain things would need to be in place before she could leave the hospital. I gave her Stephen's phone number and urged her to call Aileen as soon as possible.

(2PM)

A physical therapist comes in to evaluate Kelly. She didn't seem to have much knowledge about Kelly's injury and was asking her to walk when she hadn't walked in eight days. Kelly becomes very agitated and I tell her the evaluation is over and that it is clear that Kelly will require a wheelchair for mobility at least for the short-term. I called the nurse so that Kelly could get more vicadin.

(3PM)

Kerrie, the sitter, left at 3PM because of doctor's appointment. Actually, I was relieved because she never stopped talking.

(5PM)

It is clear by now that Kelly isn't leaving at all. Kelly is very sad because she thought she could go home. I hope that she can sleep. If the discharge planner had listened to me about Kelly's special circumstances, we would have both been home by now.

(9PM)

Kelly and I settle down for another hospital night. I wonder what the weather was like since I haven't been outside for days. The hospital is our new home and the nurses have become our friends and social life. Kelly and I sleep well.

Day #9, July 10th (9:00AM)

Doctors and nurses want to know why Kelly is still there. I explain and then get a call from Leslie, the discharge planner, that we're having an emergency meeting at 10:30 about where Kelly will be going. Her main point is that Kelly needs to leave. She encourages me to call Stephen and ask him to come to this meeting. I am freaked out because I thought all of the planning had been worked out. How could Kelly go anywhere but home? Leslie also suggests the possibility of a rehabilitation center for Kelly. I think, 'Yeah, right, considering her level of autism and adjustment inabilities.' Leslie's suggestion felt like a veiled threat and my anxiety level rose significantly. I get on the phone immediately and cannot get Stephen. Aileen would need 1:1 care for Kelly around the clock to ensure that she wouldn't take her bandages off. We had already spoken to Stephen about this and needed him at the meeting because his agency held the purse strings, and they would need to agree. Unfortunately and understandably, they couldn't make the meeting at this late notice. Why hadn't Leslie called a meeting yesterday, when she realized her mistake?

(9:15AM)

Marceila worries about me and tells me to get something to eat. She gives me a $6.00 voucher. It occurs to me that I haven't been in the cafeteria since July 2nd Marcelia is an angel, maybe the one that I had prayed for.

(10:15AM)

I tell the nurse, Marceilla, that we are having a meeting and I will need to have someone sit with Kelly because the noise and amount of people attending would agitate her. She agrees to have a student nurse sit with Kelly, understanding fully, Kelly's needs.

(10:35AM)

A nurse practitioner, the 3rd year surgical resident (1 can't recall her name but she was excellent), Aileen and her husband, Angel, Leslie and I are all in Kelly's room to discuss where Kelly will be going. I suggest that we meet elsewhere so that we minimize Kelly's growing agitation. Leslie is annoyed saying,

"This won't be a contentious meeting so what's wrong with meeting here?" I explain again that Kelly is autistic and already is disturbed. Leslie continues that there is no place to meet. I inform her that there is and explain that I've already arranged a room for us. She is quite taken aback as we go into a private room for our meeting. The plan is to take Kelly to my father's home in EI Dorado Hills, even though there is no nursing group in the area to look in and monitor her wound. Aileen and Angel are very sorry; but need to get a commitment from Alta that they will pay for 24-­hour help. They come in to kiss Kelly good-bye when Leslie gets a call from Stephen on her cell phone.

(11:30AM)

Kelly is to go home after all. Alta has agreed to pay for 24-hour support service for Kelly for at least one week. I am glad she can go to her own home and that I can get some rest. I walk with Aileen and Angel as they wheel Kelly to their car. I wave good-bye as they pull out. Kelly doesn't wave; instead she plays with her toys in the backseat.

(12:00AM)

I clear out Kelly's belongings and my suitcases. I go to the front desk and ask to speak with Marcella. She comes by and I tell her how wonderful she was to Kelly and me and how much I appreciated her and what she did. I feel like I have her pinned to the wall; but I want her to hear all I have to say. She becomes tearful and then I hug her good-bye. I have the feeling that nurses aren't thanked enough. I leave to go home and am almost held hostage by the parking attendant. I search and search for quarters, dimes, and loose dollars because they only take cash. My eight day pass had expired. A car honked as I madly searched while thinking it ironic that I had to pay even though I had worked non-stop while taking care of Kelly’s needs at the hospital. The driver behind me helps me to pay my bill. I’m still mostly surrounded by angels. I decide to pay it forward.

(1 PM)

I crawl into bed after phoning my sister telling her I'd be up to help with dad after I got some sleep. I called her at 7PM and was told that my father had suffered a fall, but this is another story altogether.