Thursday, December 1, 2011

Progress and Making Waves

Derek started in the Matc this week.  The work out is difficult and challenging, just what he loves.  He has been made to get himself out of the chair onto the table and back again.  But you know what?  Even though he doubted he could do it and tried to give up a couple of times, he persevered and has now done it every day this week!  He even sat up by himself for a long time today.  I am so proud of him.

The best part of the Matc is the other guys.  On Monday, Derek's first day, a marine, a triple amputee with a high above the knee on his left and a hip disarticulation on his right came over to talk to Derek.  He showed Derek how to swing himself around to that he could move and get himself sitting up.  Derek was given hope by watching Matt swing himself around and sit up.

Today, we watched Joe, another hip disartic, walking around the track on his prosthetics.  And of course Chaz and Will were there working out and came to chat with Derek and give him encouragement. 

And only in a place like this can you hear the phrase, "I'm going to go locate my legs," and it not cause heads to turn.

Derek was cleared for limited weight bearing on his right arm so he was able to start the arm bike.  He wants to compete in the Army Ten Miler next year with Chaz.  He will probably not be up on his legs by then, but he can complete with a hand bike, and he is planning it even now.  Nothing will hold him back when he sets his mind on something.

Derek is a fighter.  He is working hard to get himself better.  He even stood up to the doctor today and discussed his pain medication instead of leaving the fight to me.  Derek was told that there was a meeting to discuss weaning down all pain meds, not just Derek's.  Derek and I discussed it and given that he has another month of inpatient and due to his intensifying workouts, his pain has increased, we agreed that it was not time to cut back on the pain meds.  When the doctor walked in tonight, before I could even say anything, Derek took the reins and got the doctor to agree that now is not the time.  Way to go, Derek!

And it's that fighting spirit that has helped him overcome adversity in his life.  He shouldn't have to deal with the abandonment and heartbreak that he has had, that all of my kids have had, but it has made him stronger.  He is not going to let anyone or anything keep him down.

And it's that fighting spirit that helped him beat all of the infections and fight off full blown sepsis once and keep him from going septic numerous times when he was on the edge.

And that fighting spirit will overcome the odds on his hand.  This week, the hand specialist came to see Derek.  We have previous poor experience with this gentleman, and as a result of his fatalistic attitude this week, yet again, I have requested a consultation with a different hand surgeon. 

In the ICU, when Derek was still in and out of consciousness, bad news upset him, and he didn't want to hear it.  We tried to keep all information in the room as positive as possible, and if it was not good news, to at least spin it coated in hope.  We still want it that way!  Who the hell wants to hear doom and gloom?

In the ICU, this doctor said in front of him that his hand was dead and would never come back and that upset him greatly.  That is not what the original hand surgeon told me before he was transferred to Germany.  The second event with this doctor was when he said to Derek, "It's better than cutting off your arm" when we were discussing flaps, and that caused Derek distress thinking that it was an option.  This week, he again said the hand was a lost cause.  I mentioned what the original hand surgeon had said about rewiring the tendons and muscles of the hand, and his response was, "If he had his legs, we could take tendons and muscles from them to use in the hand, but since he doesn't, there is nothing we can do."  Out.  Now.  Do not look back.  Do not pass Go.  Do not collect $200.

First of all, that is such a poor example of bedside manner, and second of all, why are you discounting his hand now, at this early stage?  I want another doctor to come and consult with us about the possibilities not one who has already written it off.  If in the end it turns out that the hand cannot be saved, at least I will feel confident knowing that all that could have been done was done.  With this present doctor, I do not feel as if he will even try.

No doctor has ever been so fatalistic.  In all our time in the ICU, with Derek teetering on the edge between life and death, we were always told that he was very sick, but there was hope. 

And no one EVER said he would not walk again or even mentioned that as an option.  All of the doctors, except this hand guy and infectious disease have been very positive about the future.

I won't let them give up on the hand.

In this teaching hospital, interns rotate every six weeks.  One of the interns, Dr. J, a very sweet, young woman, was on the urology team when Derek first arrived.  She is now on orthopedics, so she is still working with Derek.  She has also been sod (senior officer of the day which is the doctor on call) several nights.  Whenever she, Matt or Josh is on duty as sod, I relax.  They have prior history with Derek.

I am not tooting my own horn by relating what Dr. J told Derek.  I am telling this story so that hopefully someone out there will realize that it is okay to ask questions, advocate for the patient, and not simply do what the doctors say.  Dr. J told Derek that he was very lucky to have me on his side.  She remembers me agonizing over every decision and asking a lot of questions.  She remembers me telling her that I needed time to weigh the options, research and think about what was happening.  She remembers me saying that I had to be very certain whatever decision I made would be the one that Derek would have made had he been able.  She told Derek that it was refreshing to have a mother so active in the treatment.

Do not ever stop advocating for your loved one, but do not do it like some of the toxic mamas around here.  If you turn off the medical staff, you are basically screwed.  We have such a great relationship with the nurses and doctors that we get information, respect and benefits.  For example, I always ask the charge nurse who is coming on the next shift.  This ensures that Derek will have a nurse with whom he is familiar, but most importantly, this ensures that the nurse is familiar with Derek.

Early this week, I met with someone with clout about certain problems.  She asked me my concerns about the hospital, and, as usual, I did not hold back. 

I explained to her my concern that certain volunteers (not all by any means) are not respecting privacy and patient boundaries, as discussed herein before.  By way of example, I am talking about the volunteers who walk into the room, around a closed curtain and stand there staring at the patient as he is being changed.  I am also talking about the woman who allowed her dog to jump up on a patient who was scared of dogs, and then she snapped at him.  Most of the volunteers are wonderful, but some are just too pushy.

Yesterday, someone came in and told us that my concerns had been taken up the chain of command and all volunteers are being held back until they complete training.  Good.  They have to remember that they are in a hospital with sick and injured people who do not want to be disturbed numerous times a day, and they have to be respectful of privacy.

Also this week I have taken on "traditional room service."  The way meals are delivered in this hospital is that the patient, or someone on his behalf, has to call and place the order.  The food is then supposed to come up within 45 minutes.  The food is delicious, when it is delivered hot, but the system is not functional.

The other morning, after trying for over ten minutes to get through, the food took over an hour and came up cold.  Derek was almost late for the Matc because his breakfast did not come in time.  The only reason he got it with any time to eat at all is because the nurse chased down the cart and took his tray off of it.  It should have been delivered in time, but they got backed up.  If this is the case, they should at least tell us that it will be an hour or longer, so we can opt to go to the Galley and buy a meal.

If you call for dinner after five, you will hold for about 15 minutes, if not longer, if you can even get through.  But who wants to eat dinner earlier than five?

I have gone down and purchased meals for Derek because the food did not come in time. 

They also come around and disturb you three times a day reminding you to order.  I found out today that they are supposed to come at 17:30 to make sure that you got through to order dinner.  That has never happened.  We get the woman at 16:00 (4 p.m.) who yells in and wakes Derek to tell us to order dinner.  I have put a sign on the door asking them not to remind us to order food.  We know to order it and do not need the interference three times a day, especially when they wake Derek.  If they were coming to take the patient's order if we had not gotten through, I would be all for that.

I spoke with the director today, and she advised me that they are short staffed on the phones and there are no plans to hire people.  That is a problem when you have an entire hospital placing orders.  They either need more people to make this system work, or they need to abandon this system as a failure and go back to having the patient fill out the menu for the day and choose what time to have it delivered.

I was also told that Derek could place his breakfast order at night and have it delivered the next morning in time for him to get to the Matc, or we could place the lunch and dinner orders with lunch.  We tried to order breakfast tonight and were told it was not possible.  Either the director doesn't know her own department or the workers need an edumacation.  Either way, this system does not work.

And only in Room 431.

Derek burped his colostomy bag and sent us screaming from the room.  He giggled maniacally.  The charge nurse came over and couldn't even enter the room.  The other day, he got Dr. West running out.

Krystina adjusted Derek's shorts and blanket and Derek yelled out, "You showed my star spangled dangler!"

Derek went down to the Matc on Tuesday.  This was his second day clamped and going on his own without the pee bag.  We had forgotten to take a urinal with us to the Matc, so I told him to wait a minute and I would be right back with one.  Before I could even get to the room, brainiac decided to use a paper cup.  He came back onto the floor yelling for the corpsman, "Dennis!  I wee wee'd myself!!"  This was how he met the rest of the team from PM&R. 

After a shower, two corpsmen were getting Derek out of the chair and back into bed.  Harris moved the arm of the chair, and that caused the chair to buck forward, sending Dennis flying back into Krystina.  She reached up to brace him, and she grabbed his butt!  After we all caught our breath from laughing so hard, Derek was settled back into the bed.

Many times when I am talking, Derek will say, "Silly Si-o-bon" (mispronouncing my name).

Derek's favorite thing to get pampered by Krystina and me is to use the line, "But I'm a cripple" and then he gives a big, toothless grin.

We do keep the laughter going in Room 431.

Derek received so many cards and care packages today.  Thank you, everyone who took the time to reach out to him and help him in his healing!

Finally, RIP CSM Naoma.  Naoma was one of the hospital dogs and she passed away from an aggressive form of cancer.  A service was held in the Garden of Peace this week, attended by the other three hospital dogs - Bobbie, Laura Lee and Sgt Archie.  It was very moving.  Brother David did a wonderful job.

We are continuing that climb to glory.  One step at a time.  Day by day.  God bless our supporters and the family we love.

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