Friday, November 30, 2007

Midnight PST

There is so much to write about...

Yesterday morning David did really well during PT/OT time in the gym. He walked 3 laps on the parallel bars, and was really determined to get out of his chair and go. Se, PT, told him to be patient, and count to 3 before he got up so they would be ready, and David kept counting really fast- determined to get up.

The respiratory therapist came to talk to David yesterday about his trache, and the anatomy of the throat- trying to alleviate the fears he has about suffocating and aspirating. The RT also gave an inservice to staff about traches, so that there would be no more incidences of not deflating the balloon before capping his trache.

Mom and I talked to the doctor yesterday about all her questions, specifically about rearranging his medicine schedule to give him more sleep at night. David's trache was capped in the morning and then at night, sleeping most of the afternoon. When he woke up, about 4 in the afternoon, we were told that he was pretty restless and agitated, hitting a nurse or two, and the nurses needed to sedate him to calm him down. He woke up from the sedation around 8 at night, and mom and I went to see him. He didn't talk to us much, but when mom dialed Kelli's number he started talking to her with the speaker phone on. Mom had to repeat some of what David said to her since his voice is still soft and whispery. He told her that she wouldn't believe the day he had, that "some crap" happened, and that he was hurt so much worse today. Of course our blood pressure was rising as we listened for the rest of the story. He said that a guy nurse grabbed his wrists and twisted them. Though we were fuming inside, we explained that sometimes the nurses worry that he's going to pull his trache or his peg tube out when really he just wants to scratch under the elastic band on his stomach that protects the peg tube, or rub his neck around his trache. But that's why they try to pull his arms away. David responded that he was so frustrated and that he tried to tell them... He didn't have his trache plugged, so we think that the way he would "tell them" would have been to keep trying to do what he needed- which would have worried the nurses even more. As furious and curious as we felt, we told David the part of the story that the doctors told us, about him hitting the nurses, and he felt really bad. He asked if they were okay, and we told him they were. We assured him that we would figure out what happened, and told him that he could have the nurses call us at anytime if he needed us. They're supposed to be calling us right when he wakes up from naps, but it seems like they wait until he gets settled into a wheelchair before they call us (which we're trying to change). David was pretty tired and started to fall asleep again, so we said a prayer and left him to sleep.

Today, we woke up and went to be with David while he got up and ready for the day-watched him shave and prep for Kelli's visit :o). The speech therapist, Bruce, had changed his appointment time from the afternoon to the morning to hopefully catch David awake, but for some reason David slept through most of the session. He woke up right after Bruce walked away, and we wonder if he's faking it... J/K, I know David likes Bruce. Then it was time for PT/OT, and David again did great standing and walking. He isn't a fan of them when they try to stretch and range his left arm, but when we tell him to push through it and remind him that's it's worth it, he lets them keep going. Kelli and Rose came during his session and were able to see David walking.

After a nap, Kelli went to hang out with David while mom and I had a meeting with the Neuropsychologist. Kelli showed David the video she made, and David watched intently and told a couple stories about the messages you all included. They took him outside and he got to hang out with his aunt, uncle, grandpa, Brea and the Mannings. During the meeting mom and I were in, we were able to problem solve a few problems about overstimulation, getting the nurses/therapists to be more attentive and patient when David talks in his soft voice- listening to what he needs and not filling in the blanks as he talks, trusting his movements a bit more when he seems to be aggitated or uncomfortable, watching some visual cues that he gives when he needs something, and to have them explain what they're doing and why so that David will understand their concerns and not just that they're "restraining" him. We talked to her (as well as the doctor earlier) about David's complaint yesterday about the nurse twisting his wrist, and she said that the nurse did have to hold his wrists down because David's movements were endangering others as well as himself. As hard as it was to hear that complaint from David, we also realize how David CAN and has hurt people when he gets frustrated. Hopefully our ideas that we brainstormed will help out in this area, informing the nurses of David's intentions and working with David's communication. It will only get easier when David is able to talk all day, so we need to be patient too. The neuropsychologist is sort of a liason between the doctors, staff, and us, and she was very open to our ideas and tried to explain some of the future issues we might have with David as he recovers more. When we finished the meeting and went to see David, he was ready to take another nap, so we let him.

At about 4 Kelli called (she was sitting with David for a bit) and said that the doctor wanted to meet with us, so mom, Annette and I went up. He tries to meet with us each day, and this time wanted to include David in the discussion. David had some things on his mind that he was trying to express by writing, but that was too hard. We asked him to be capped, and they allowed it. The nurse had problems doing it, this time in front of the doctor, and I was livid again! She didn't deflate the balloon, and she plugged the trache- so David couldn't breathe for a sec until another nurse took the cap off. When we told her to deflate it, she did and put the cap back on but David still had a hard time getting air, so the doctor asked her to check and make sure it was deflated all the way. Without checking she said yes, but the doctor told her to try again to get all the air out. She squeezed it with her fingers- while my brother's trying to breathe- and the doctor had to tell her to use the syringe and suck all the air out. She finally managed to get all the air out of the balloon and David could breathe easily again. The doctor addressed the situation again with the nurses at the station, and hopefully only the nurses or RTs who are trained with David's type of trache will be working with him. With David being able to talk, he asked the doctor about being able to swallow, and he wanted to talk to Bruce, the Speech guy. Luckily, Bruce was walking down the hallway and I flagged him down. He hadn't heard David talk, since David sleeps through his sessions, and was quite surprised and pleased. David asked what the swallow test was, and Bruce explained that its a 3 day test to see how well David swallows a certain drink. Bruce didn't know that the doctor had put in a request for it to start on Monday, and told mom that he didn't think that David would pass. But again, he hasn't seen David much outside of sleep, so hopefully David will pass with flying colors. Well, that just started the long night, as David was becoming more confused in his thoughts and expressions. He was pushing himself in the halls trying to find his "real" room and wasn't content in any place or area. It was really hard as I was walking next to him in his wheelchair, trying to explain where his room was and show him the pictures of his friends and family on his walls, but David was not content and seemed so frustrated. After an hour of that, mom and I both asked if they could give him some medicine to sedate him a bit. Never thought we'd ask that, but it had to be so hard on David to be in that state. David finally wanted to go to bed, and the nurses were able to feed him since he wasn't in one spot long enough to do that most of the evening. Once he was settled, we prayed again for him and we let him rest.

Thanks for the prayers and your patience as we skipped yesterday's blog! We know God is working miracles in David, and that each of David's new "states" is a step closer to full consciousness and healing. We ask that you continue to pray for David's healing, and for a peace and understanding that can only come from God. We also want to pray hard for his swallowing test, so that he can begin to enjoy food! That would be such a boost to his spirit!!!

-Laura
(I wasn't ready to go home, so I extended my trip 'til the 10th of December!)

P.S. I posted a few more pictures on David's recovery slideshow the other day, so check them out!