Thursday, September 15, 2011

The Cool Kids' Table

I walked onto the CCU floor this morning for the start of day 47 and the first thought that struck me was that I knew every one of the nurses and doctors who were on the floor at that time, change of shift (06:45) and I liked every one of them.  That struck me as both heartening and scary.  This is a world of which I never thought I would be part, and one that now that I find myself trying to muddle through, I am grateful for the compassionate doctors, nurses and therapists who have helped guide us and who have treated my son.

I make it a point to be there for rounds every morning.  In the beginning I felt like the nerd trying to get a seat at that cool kids' table in the cafeteria at the highschool.  I stood at the back peeking in and straining to hear what they were saying.  I had to watch for them and sneak into the back of the pack to hear anything.  I didn't understand most of it, and later, I would catch one of the doctors that I knew or I would ask Derek's nurse to explain this to me.  I felt like I was intruding on their secret club.

Also, rounds always started at the far end of the hall and made their way down to Derek's room.  They usually started around 08:30 or 09:00, and they would get to Derek anytime between 10:00 or 10:30, depending on how much they had to discuss and how many other patients were on the floor.  Since the SICU team came over from Walter Reed, this has varied a lot.

But this all changed.  When Dr. Mielky joined the team, he used to explain things to me, and he was wonderful.  And when his rotation ended and Dr. Dan joined the team, he took what Mielky started and enhanced it.

But the entire team has changed.  Not the personnel.  I am now part of the team, as it should be.  If I am sitting in Derek's room, they knock on the door and call me out to join them.  They have been starting at Derek's room at 08:30 and then going down to the far end and making their way around and back up the hallway towards us again.  I seem to be the only family member involved in rounds.

I really do learn a lot, and I hope I am contributing to their assessment.  They ask me questions, and they have made changes to Derek's care as a result of my input.  I am there all the time, and although I know the nurses are excellent, I know my son.  I watch and I know how he reacts to certain things.  Also, his file is so thick by this time that it is not possible for each shift to read everything and to know everything.  It is just easier for me to fill in the blanks on certain things if they are overlooked, such as the sandbags on his leg to keep it straight.  That is something that is so important but that is so easy to be overlooked.  Also, the nurses are not there to do his bedside OT, but Sam said it is important that he work his arms, so Krystina and I can do the OT while the nurses worry about the med stuff.

I really and truly appreciate the respect that the team is showing to me by talking to me and allowing me into their club.  I don't want to step on their toes and I defer to their expertise, but I have observations that might help and it appears as if they are taking them into account.  I just want to be kept completely up-to-date and informed on all matters of Derek's care.  As his mother and the one who has been there for him since he was a little one, that is my right.

The white count when down slightly to 19.8.  Again, white count alone is not indicative of a problem, because it needs to be weighed against so many other things and he has so many infections raging.  No fevers today, so that was good.  There is another infection in his lungs, stenotrophomonas.  This is an environmental infection that is very prevalent in ICUs, and many of us get it, but since we are not compromised, we can fight it.  He is on such broad spectrum antibiotics, they are not putting him on anything else.

The OR was a little scary.  The washout went great, wound vacs were changed, and the skin graft went without a hitch.  The sore on his back was repacked and appears to be healing.  While all the procedures were picture perfect, it was the anesthesia that once again caused concern.

When they moved Derek off of the table, he desatted.  His blood pressure and O2 level dropped.  Over the last several days his secretions had increased, so there are concerns for clots.  They performed a bronchoscopy, but that was clear.  They took a chest x-ray, and that was clear, but it appears that he actually did rip out the central line last night.  He is supposed to get his PIC line tomorrow.

And they are supposed to do a CT scan tonight to check for clots and other problems that might have caused the desatting.  He has had difficulties with the anesthesia in prior surgeries since he arrived, but never to this extent.  After 25 surgeries in 54 days since injury, I think his body is just tired of being knocked out!

Good news is that he seems more lucid, so the medication that caused the delusions is out of his system.  Tonight he is on only remeron for sleep, dilauted for pain and neurontin for phantom pain, plus the various add ins due to the tube feeds (magnesium, etc.), and all those antibiotics.

Even though the tube feeds continue, he passed the swallow study and food is starting slowly, today he had a vanilla milkshake from McDonalds and a parfait (sans fruit).  He is starting!

Angela from RT brought Shirley around to visit - another wounded warrior Mom whose son is on the ward.  Yay!  Finally got to meet her!  Tim is ahead of Derek in his recovery, but hopefully they will meet soon and will be able to help each other through this.

Derek had many visitors today.  Aunt Mary and Uncle Len visited from Florida and they brought along their daughter Cristina and her daughter, adorable little Ava (2 yrs old).  Uncle Len had been here a couple of weeks ago, but Derek looks a lot better now.

Also, army brothers Pleckham, Beckner and Kurtz came for a visit.  All three are in Derek's Platoon.  Beckner and Kurtz are on R&R, and Pleckham is an outpatient here.  Pleckham has visited a couple of times already.  Derek's morale went sky high getting to chat with his army brothers.  We stayed in the day room and let Derek talk smack with the guys.  It was great to see him smile and laugh with the guys the few times I walked by the check on him.  Hey!  I'm a Mom!  I had to check on him!  They were in there for three hours!  I had to get special permission for all three to go in since only two visitors are allowed at a time, and when the three came up, I was told only two at a time.  I went right to Lt. Commander Lopez, the nursing commander and asked him if all three could visit together and he immediately approved it.  What could be better than army brothers?

Learned tonight that entire schools are praying for Derek.  Humbling and heartwarming.  Thank you.  Thank you for taking my son and my family into your hearts and into your lives.  This is such a personal journey.  It is so easy to come out in the beginning and offer support.  But when it drags on, as these things do, most people go back to their lives and forget those of us who have to continue this daily struggle.

After 47 days here and 54 days since injury, we still have so many people offering support, and so many more coming forward with prayers and offers for help.  Thank you.  This is going to be a long journey.  It is so wonderful to have so much support.

That's the story for today.  Good night and God bless!

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