Hills and Valleys

 

Got out of the hospital at almost 10 p.m. tonight, picked up my gourmet meal at McD's, and intended on being asleep by 11.  Didn't happen.  Got back to the Fisher House and some families were having "Taco Tuesday" and invited me to join them.  I knew Miriam, Minnie and Christopher, so I sat for a spell.  Krystina came down and joined us and we had a good old fashioned gab session away from a hospital setting.  Boy was that good for the soul!

This morning Derek's white count was 19.7 and he had no fever.  I asked the doctors if they were going to change his central line, since Tuesday has come to be known as "Line Change Tuesday."  They said there was no indication that it needed to be changed.  Tonight as we were preparing to leave at 8 p.m., Derek spiked a fever, and the night nurse said his white count spiked in the afternoon.  Since she was so busy taking labs, getting night meds and working on getting the fever down, I did not ask her to look up the last white count.  I will get that in the morning.

My Dad came down from NJ today, so he and Krystina left at 8 to get something to eat and get my Dad settled in the room.  I stayed to make sure that Derek was made comfortable and to help cool him.
The fever had spiked to 103 after hovering between 98.6 and 99 all day.  As the nurse went about getting the labs she needed, I put ice cold compresses I made myself with gauze and ice chips across Derek's forehead.  He asked for the board and typed out, "best Mom."  He then mouthed, "I love you."  I told him I loved him, too, and he asked me how much.  I told him enough to drop everything, and leave everything behind to be there with him until he was well enough to not need me anymore.  He typed out, "wow.  That's a lot."  One tear slid down my cheek.

This morning's rounds revealed that Derek had been persistently tacychardic all night, and that they were concerned that he was not ready to be off the ventilator.  He was put back on pressure support of 40%, 5/5 at 11:50, but they tried the trach collar once again at 16:50.  Unfortunately, when the fever spiked, Derek requested the pressure support of the vent, so at 20:30, he was put back on the vent at 40%, 5/5.
As far as his pain control, he is so stoic and tough, he does not want to admit when he is in pain.  Not necessarily a good thing while going through this.  They upped his oxycodone and are trying to convince him to use his PDA more often.

His tube feeds are up to goal at 75, and he is tolerating them well.

Due to anemic qualities, he had to receive blood overnight.
The CT was put on hold due to the down trend in his white cell count, but Dr. Fiske (infectious disease) still wanted to continue with it and was planning to talk to the SICU team.  After his white cell count went back up and the fever spiked, I think she will win that.

PT and OT both came today, and PT was talking to the doctors about putting in as part of their orders the position of his leg.  The problem over the past week was that the nurses did not know that his leg had to be kept in the down position, so I had to keep repositioning it.  Now it will be part of the orders.  This is important because the muscles need to be stretched so they do not constrict and delay him getting his prosthetics.  This is not something that most nurses think about when going about all of the other things they need to do.  Some of them, like Mike, is up on things like that, and he had Derek working out the leg.  But most of them are more concerned with the medical end of it and wound care.  So for the past week, I had to follow up on the leg position.  The PT, Mary Jean, told me I was an excellent advocate for my son.  Why, thank you, Mary Jean.  I try.

Dr. West came to see Derek today and is giving him something to help him sleep besides the pretty little butterfly, which he is not crazy about.  Truth be told, neither am I.  I trust Dr. West.

I was working out Derek's right hand, the one that was severely injured, and he was very concerned with whether I could feel him squeezing my hand.  He cannot do that yet, but it will come.  I rubbed lotion on it, and he asked Krystina to rub lotion on his left hand and typed out on the board in all the true Derek glory, "Mommy does it" with a little pouty face.  Derek has not called me "Mommy" since he was little.  He had Krystina and I under the bed laughing so hard!

While Krystina was wiping his face because he was sweaty, he said to her, "I love you.  You're my baby."
Krystina is so devoted to Derek.  She spends all day tending to him and caring for him.  When she is worn out, she naps in the "super comfortable" chairs.  I thank God for her.  She truly is a blessing.

It's almost midnight and tomorrow is Surgery 22.  Another washout, debreedment of dead skin, changing of bandages and wound vacs, etc.  In five hours it will be time to wake up and get to the hospital.  So, good night, everyone!