Janary 21 thorugh 27, 1999 update

Well time flies when you aren't having fun....

Guess best way to cover the last week is just to go day by day...

Thursday...

She was really sharp today, recognized the Isle of Man TT racecourse from one short shot on the TV and recognized Mike Hailwood...I thought it was Dunlop at first. Team meeting went okay, no much got settled on the nursing end but they promised it will get better...

Friday

They finally cleared her from her collar, walked in and she wasn't wearing it and she looked great. She still has to wear it when up in the wheelchair because of weak neck muscles. Had Suze up in the stretcher/wheelchair today for about 1 hour before she got a bit tired and cranky. She is starting to get to the point mentally where she realizes where she is and why. She spent about an hour running her hand over her faces feeling for scars. Because of the continual problems with the nursing staff I have taken on most of her care when I am there. They were waking her up at 4 am to give her a bath then saying that she wasn't sleeping....well if you woke me up at 4 am I would be pissed also. So I give her a bath and get her ready for the night around 8 and get her all tucked in before I leave for the night. It gives us sometime together doing something.

Saturday...

What a screwed up mess. Get a call about 7 am to tell me that they need my permission to take Suze to the Operating Room because she pulled out her stomach tube last night around 10 am. I expressed my displeasure on the fact it took 9 hours for them to call me, on the fact that they allowed it to happen in the first place etc. Gave permission over the phone and told them I was driving in and would be there in about 1 hour and wanted answers when I got there. Got there and they still hadn't gotten her down for the tube replacement. Instead of the OR they took her down to radiology (since she already had the incision etc) around 1500. She was pretty much quiet the whole day. They couldn't answer the simple questions like, did she pull the whole thing out or are there parts still left inside (couldn't answer that one since the staff threw the old tube away before anyone who was really qualified to look at it did so). An order was supposed to have been written to have her wear an abdominal binder over the tube to prevent this from happening..that looks like it was never implemented. The regular doctors were off this weekend and the covering doctors couldn't be bothered to come by and talk to me. So I stayed the night and when they asked me why told them it was because I had absolutely zero faith in their ability to safely care for Suze. You could have heard a pin drop at the nurse's station when I said that but not one of them offered a rebuttal. So her nurses through the weekend were either the charge nurse or a qualified charge nurse. Pretty much a wasted day for Suze, she went for almost 24 hours with no medicine, no food and no water because of the tube problem, but we did get her up in her wheelchair for about 1 hour and then they sedated her for the replacement so she was out like a light.

Sunday...

She slept most of the day away. Read to her and watched a little TV but she was out of it pretty much. Told her that due to her pulling the tube she would have to wear an arm restraint but that I would talk to the doctor about getting that changed on Monday, she gave me a big thumbs up on that.

Monday...

Pretty cranky when I came in since they tied her arm down to prevent her from pulling on the tube, but of course in their typical half-assed fashion went I came in she had moved herself around so that she had the tube in her hands even with her hand in restraints. It really seems as if the nurses are incapable of foreseeing the end result of a probable chain of events when they do things. Thinking back that is how they allowed her to pull the catheter out twice. Discussed that I wanted her out of restraints and they went with her binder to cover the tube. All the restraints were doing was pissing her off. Got her dressed in sweats and took her outside for a bit of a stroll around the front of the hospital, the fresh air and sunlight tired her out but she loved it and did great. She hasn't been too responsive with her therapists in the morning but I think it has to do with the damn restraint and lack of sleep.

Tuesday...

Got her in her sweats and outside again today, for 20 minutes this time, love these warm sunny winter days we have been having. She was up in her chair for 1.5 hours and did real well the whole time, holding herself up straight. Should start her on the mat room fairly soon to work on her balance in prep for starting walking. When we transfer her to the chair she assumes most of her own weight and tries to walk. During bath time she washed her own face and tried to do the rest of her bath stuff like brushing her teeth etc. She has made some real progress in the last week or so.

TriCare moved into the 'malicious compliance' phase of the on-going battle. They now refuse to talk to me about her bills etc citing 'privacy concerns' and to top it off they have given me a deadline of the middle of next month to submit third party liability forms with either Suze's signature or a designated guardian/power of attorney signature or they will deny all claims and not cover her treatment. Just totally unbelievable. Been trying to get in touch with my case manager to try and get this sorted out but of course she isn't in.

Wednesday..

She was up in the chair for about 2 hours today early in the morning, they are planning on getting her up twice a day from know on, she is making that much progress. At this rate she should be able to transfer to the next facility fairly soon hopefully in a couple of weeks.

She was all smiles today when I came in. Then she got the giggles when I was talking to her and trying to make her laugh. Whomever said laughter was food for the soul sure pegged that right. Hearing her laugh was just what I needed. We decided on St Croix for her after accident vacation to celebrate her recovery....I can just see me burned to a big red crisp and Suze tanned to a turn.

Another team meeting tomorrow and I need to work on the pointed questions aspect of the agenda...

take care all

lawrence