Monday, November 21, 2011

Wilson, NOOOO!!!!!!

The last couple of days have meant a lot of progress for Derek.  He continues to amaze us with his sense of humor and his "never give up" attitude.

On Friday, he rocked it in PT by lifting 5lb weights and sitting up on his own.  Krystina and I felt comfortable enough to get out for an hour and meet some lovely ladies for lunch.  Unfortunately, my car had other ideas.  It wouldn't start... again.  This is a new car and shouldn't do this!  Oh well.

They also disconnected Derek's PCA - Patient Controlled Analgesic.  Dr. D wanted Derek to yell out, "Wilson, NOOOO!!" as they removed the PCA.  Derek referred to his PCA as his Wilson.  This comes from the Tom Hanks' movie Castaway.  Derek felt a lot of comfort with his PCA.

They first gave it to him the Wednesday after he went septic, August 10th.  HIs hands were so swollen he could not move them, but he was expected to push the dang button.  It was temporarily made into an MCA (Mom Controlled Analgesic) until they brought him a big black arm that held it in place and where he could simply raise his swollen arm and tap the plastic block they put in front of the button.  Eventually, he no longer needed the black arm, and the button with the plastic face (on which I drew a big smiley face) was tapped onto his bed.  Derek slept with his hand resting on the button.

Over the last few weeks, the PCA was reduced from 1 mg Dilauted to .6, .4 and eventually .2.  Friday, it was disconnected.  No more PCA means he might get a pass and be able to leave the hospital! 

Since his entire family will be here for Thanksgiving, we are hoping to get a pass that day to attend a Thanksgiving dinner at the Omni Hotel with the 10th Mountain Association.  I signed us up, Derek plus 13, so let's hope we make it!   Krystina's family will be down on Friday, so at that time we will have 17 visiting.  I already warned the nursing staff that we will be taking over the conference room for the weekend.  It is going to be wonderful to have all the people who love Derek the most, and who he loves the most, and have supported him unselfishly throughout this all together next weekend!

When I asked Dr. D if it was possible for Derek to get a pass for Thursday, his answer was, "Let me consult my Magic 8 ball...  (shaking invisible ball)...  The answer is 'yes!'"

This weekend, Derek also had his IV fluids dc'd.  Since he is drinking a lot on his own and no longer vomiting, the fluids were discontinued.

The PICC will still stay in place, though, for the IV meds he still gets (Regulan for his gut and the boluses of pain meds, as well as the magnesium replacement that keeps dropping almost every day, etc.), as well as the daily labs.

Derek also turned himself for the first time today, without assistance.  He is slowly getting his strength back.

Before Derek goes to outpatient, though, he will need to be able to get himself to and from the wheelchair, change his own colostomy bag, toilet on his own, and dress himself.  The strength isn't there, yet, which is why we are now into the poly-trauma rehab phase.  Before the merger of NNMC and WR, poly-trauma rehab was done in Richmond, VA, Tampa, FL, San Antonio, TX, or Palo Alto, CA.  Since the merger, they have the ability to do it in Bethesda, so we do not have to move.  We really did not want to leave our wonderful nursing staff, the fabulous corpsmen, and all of the doctors we have come to know and love.

As for future surgeries, right now Derek is looking at having the temporary concrete spacer in his arm replaced with cadaver bone either late December or early January.  I hope they do it before he becomes an outpatient, so we do not have to go to Bldg 62 and then come back to inpatient status.  He might also have to have his hand rewired if it does not regenerate and come back on its own through OT.  As of now, he can move his fingers a little, which is a wonderful improvement.

But it's Derek's attitude that really keeps us snowed.  His sense of humor is inspiring.  He has nothing on his left side, which was a hip disarticulation - removed the ball joint from the hip socket, and he has about 10 inches on the right side.  He can now move his stump with great intensity, and when he is happy, he wags that little stump like a dog's tail!   When he is upset, he whacks that stump into the bed and mock yells at us.

On Saturday, the doctor came in and after talking to us asked Derek if he wanted him to remove his breakfast tray, which was at the bottom of his bed.  Derek's response?  "Please, so I can stretch my legs."

Derek also loves burping his colostomy bag.  Derek was always a very gassy individual, and that has not changed.  In the elevator the other day, Derek burped the bag and sent Krystina and I gasping for the door.  His belly laugh was the best I've heard in a long time.

While in his wheelchair, he pulled a speeding 360 in the Main Lobby (formerly the Quarter Deck), in front of two sailors who hooted and hollered for him.  He is a maniac in that thing!

This is not an easy journey, but with wonderful people around us and the support of our family, we are making it.  The stress at times becomes overwhelming, and I actually felt like I was at the end of my coping ability on Saturday morning, but a wonderful corpsman, Dennis, helped me through.  How?  Just by talking to me and by making sure Derek had a nurse who knew him. 

Continuity of care is so important.  Derek has so much going on, I just do not have the energy to get a nurse who is not familiar with him up to speed, especially in light of the fact that he might be moving to PM&R tomorrow, which is a whole new set of doctors.  Trauma will still be on board, but PM&R will be taking over as primary.  Having to get a new team of doctors up-to-date is an overwhelming thought.  It didn't go very well the one day they were onboard, so this has me very nervous.

I took Dr. West's advice last week and asked that the PM&R team visit daily so that it would not be a cold transfer, and they listened and started coming around.  Sometimes, Dr. W has some good hints.  He does seem to care, even though he is hard to read with his dry sense of humor.  He actually showed up early Friday morning so as not to miss me.  I had sent him an email about something, and I had never done that before.  He was concerned that he had upset me.  He hadn't.  I just sent him an email to clarify a question that I didn't think I answered fully the day before, and since Krystina and I were going to try to go to lunch, I didn't want to miss him.

Saturday wasn't that bad, for only the second time since we arrived.  After I cleared up the nursing issue, it went okay.  There was an idiot SOD on during the day, but the night doc was wonderful and took care of the issue.  The nursing problem?  A nurse I didn't know came up to me and simply said, "I'm his nurse today.  Be right back."  Then she woke Derek to tell him she was his nurse.  No name.  No introduction.  And no reason to have awoken him.  Just, "I'm your nurse."  I don't think so.  She had also come in to hang the magnesium at that point without telling us what she was doing and seemed put off when I asked.  Why wake Derek if not to tell him what you are doing?  I really don't think so.  I was too tired to deal with it that day.  Since she was partnered with a nurse who actually knew Derek, I asked that they be switched.  It really is easier than having to explain everything that is going on, how he likes to move, how to get him into the wheelchair, and all the other little nuances that make Derek Derek.  This new nurse could have been wonderful, but I was just too tired to deal with it, especially after the bad taste left by the initial interaction.

Derek is more comfortable when he has someone he knows, and so am I.  I can see it in his whole attitude.  When it is a nurse he doesn't know, or a corpsman with whom he does not feel comfortable, he is quiet and reserved.  This isn't the Derek we know and love.  Our Derek is loud and a real jokester.  Singing "Wiggle It" while being wiped down, asking, "Where my dolla bills at?" when having his shirt removed, and telling Katie she is one of his "big bootie bitches," is what we want to hear.  If I thought for a second he was being disrespectful, or if the staff was put off by it, I would discuss it with him, but they seem to love it.  Laughter is what we want to hear coming from his room.

We ended up having a lot of fun this weekend, Derek, Krystina and me, and fooling around with the corpsmen is always a blast, even when one grabs my wrist too hard while wrestling and bruises it.  I used that to my advance!

So, we are moving onward and upward and making progress again after the setback last week.  Here's to no more setbacks and continued progress!

God bless!

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