So ready to go home....

I know this place (Kindred) has a very good reputation and is considered one of the best facilities in the area for ventilator weaning, I hope they live up to their reputation and get Jerry weaned quick. I'm not impressed so far and if I'm being honest, this place is a nightmare. From day one I have been uncomfortable leaving Jerry alone for even a few minutes. Upon arrival I got the impression the room hadn't been cleaned, two trash cans were heaping full in the room. Within an hour of being here Jerry's oxygen saturation dropped significantly and he needed to be bagged, there was no ambu bag in the room, someone had to run and get one elsewhere. It should be standard for every room to be equipped with an ambu bag, particularly in a room with a ventilator patient. A nurse plugged in a tube feed to Jerry's PEG tube, she didn't open the valve on the PEG, after several minutes the tubed popped off, fell on the floor  she was gonna reconnect it without even wiping it with alcohol, I stopped her saying "that's not sanitary, that was on the floor", then she wiped it. There is no PT, OT, ST after 5 or on weekends,  so to get Jerry out of bed and in his chair I had to rely on the nurse and nurses aid to help me. The nurses don't  know how to operate a Hoyer lift or at least didn't have any safety skills, I don't think they've been properly trained, I'm the one saying watch his feet, your smashing his head with the lift bar. They don't have monitors in the room they only have one at the nurses station which does not track oxygen levels. I requested a monitor for his room and they brought me an oximeter so I can watch his sats.  Jerry's sats began to drop rapidly and the oximeter started alarming, I thought someone would come running in immediately and nobody did. I went to the nurses station in which there was a doctor and the desk clerk, I informed them I needed help Jerry's sats were dropping rapidly. I went back to the room expecting there to be someone right behind me but there wasn't. I noticed that the oxygen T-piece had popped off the trach, I popped it back on and told him to take some deep breaths, within seconds his sats returned to normal. The respiratory therapist showed up about 3 minutes later. I was furious, what if I had not noticed the T-piece, how low would his oxygen level have gotten in 3 minutes, it was already at 79% when I put it back on? I asked at the nurses station why nobody came when the alarm went off and she said "they didn't hear the alarm", I asked "didn't it alarm on your monitor here at the nurses station?", she said "No, we don't monitor oxygen levels at the nurses station". How does a hospital that specializes in respiratory and ventilator weaning not monitor oxygen levels, its absurd. I'm not a complainer and generally choose not to rock the boat but when it comes to the safety of my child I won't hold my tongue any longer. I had a sit down pow-wow with management and gave them the laundry list of complaints. They were very thankful for the info, addressed the issues right away. As a result I lost my shower privilege, suddenly "The shower is for patient use only, it's not safe for me to use and would not be covered if I have an accident". It's just been one thing after the next of events that make me feel unsafe about leaving Jerry alone for more then a few minutes. Even Jerry said "Get me outta here", I explained we can't leave until your off the vent, his response was "I don't care, I can breath, lets go". I seriously considered loading him in his wheelchair grabbing an ambu bag and driving his butt to Valley Med, they can't refuse if show up in their ER. Don't worry, I came to my senses, I didn't kid nap him. Instead I called his doctor which was unavailable so I talked with his partner pleading to find another place and get us out of here. Unfortunately there are only a few facilities that do the vent weaning, Valley Med which won't take him, Kentfield in Marin which won't let me stay with him and Kindred, so for now we are stuck here.

OK so enough with the negative, on to the positive. Jerry got an eval from PT (physical therapy) and OT (occupational therapy) today. Each will be working with Jerry 3 days a week so between the 2 of them he should get 5 days a week. Jerry also had an eval with ST (speech therapist), she loves Jerry, she claims he is her most favorite patient....so cute. She was so wonderful, so many good exercises and suggestions on how to help Jerry communicate better with us. She also had a device called Intra-Oral Electrolarynx, you place the straw on his tongue and when he talks it gives him an electronic voice. It's gonna take some practice, he did well at first but then fatigued fairly quickly. The ST left the device here in the room, she'll come again tomorrow to work with him some more with it. I may have to sneak it out tonight to see if Jerry wants to play with it, practice a little. Jerry is doing well off the vent all day and then back on at night. Tonight when he goes back on the vent the settings will be very little assist, it will be like CPAP. Jerry has been spending 4 to 8 hours in his wheelchair which is remarkable, he hated the wheelchair before and refused to be in it unless he had someplace to go, now he is asking us to put him in, and when we ask if he's ready to get back in bed he says "No", he lets us know when he's ready. The doctor also gave the OK to try the talking valve again, so that may happen tomorrow as well.

That's all for now, thank you all for continued support and prayers.

Katie