Friday, November 11, 2011

Too Many Cooks

Happy birthday, Marine Corps!  Thank you for your service and dedication.  Semper fi!  Oh rah!

When there are too many cooks in the kitchen, each one adding his or her own favorite ingredients to the stew, they do not mix well together and the stew tastes awful. 

Handling so many different medical issues, injuries, and wounds and trying to balance the myriad of medications and side effects so that they work with Derek's individual body and diet is a real tightrope act.  Derek has about ten different medical teams and each one throws a different pill or IV med at him if a surgery doesn't fix him.

The last two days were hell.  I had to follow my mommy gut while battling the doctors that I have come to know and trust.  This battle was waged while putting on a brave face all the while hoping that they didn't notice my knocking knees and thanking God it wasn't my vitals that were being taken or they would have noticed my racing heart and the fact that I couldn't breathe.

Rewind early last week...  Derek's phosphate level spiked.  Endocrinology was consulted and recommended solo-something (name escapes me).  This pill is taken three times a day with meals.  The side effects were a slow gut, so they gave him four different medications to get it going.  Seemed like a little too much medication to me.

We had some funny moments with Dr. Diego on this issue. 

Over the last week, less came out then went in.  Doesn't take a genius to figure out that this is not good.  Anyway, Tuesday night, it came out the in door.  This is not good for a kid lying on his back who cannot move himself. 

Wednesday morning, Derek decided that he would rather have high phosphate and go to the bathroom.  And so the battle began.  But it was my battle to have, because Derek went to sleep.  He refused to first set of meds, and left me to do the battle.

I hate to say battle, because I know the docs were doing what they felt was in Derek's best interest, but so was I.  They wanted me to have all of the information so I could make an informed decision, but I didn't need doom and gloom.  There is a right way and a wrong way to say something.  You can give me the information without scaring me into doing what you want.

The worst part of the week was the effect that the rushed decision to go to PM&R had.  Wednesday we were switched to Physical Medication and Rehabilitation (PM&R).  It lasted less than 12 hours.  By Trauma Rounds in the afternoon, we were back with Trauma. 

I was a little ticked off in the morning, because the PM&R docs who came in were not the same docs were came in Tuesday morning, and she started with the doom and gloom. I told her we were not playing with Derek's gut because he had a history of gut problems and she told Derek he could have a heart attack!   I yelled at her and threw her out.  I told her to send in Dr. Dimples. 

Dr. Dimples and Dr. Diego waited until I left for Union Square to get Sean to come in and try to get another medication started.  Krystina texted me and I objected via text.  Derek was out cold, but he had said no before he went to sleep.

This morning i was at the hospital at 05:00 to meet with the docs and Dr. Diego tried his doom and gloom.  We went toe to toe.  I give him credit.  Neither of us backed down.  He scared me.  But I followed my gut.  He is the only doctor who comes back at me.  Makes for some interesting interactions.

Then Endocrinology came in and gave their doom and gloom.  I still insisted on trying diet.

My argument has been - diet.  Why throw a pill at it when we can try to regulate with a low phosphorous diet?  If the pill slows his gut and we are throwing FOUR medications at the gut to wake that up and it's not working, why not try diet for a couple of days, especially given his history of gut problems?

So the dietician came in.

And after one day of no meds and no junk food and a low phosphorous diet, the phosphorous lab was almost normal!  The endocrinologist came over and told me I was right.  I had to wrest it out of Dr. Diego.  I am more concerned with Derek's diet and keeping the number low, and I am afraid that this diet will not work and the level will go up again, and he will keep getting sick.  I am afraid that the slow bowels will not resolve and we will have to take further action.  But Derek still does not want to take the medication.

He is back to himself tonight.  He was joing and laughing with krystina and Sean, who is here for the weekend.

Yesterday he had some visitors.  His LT came while on R&R.  Mike Sidman was there when the incident happened.  He was able to fill in a lot of the details for Derek that he did not remember.  Do was Derek's friend Matt Brewster, who is also on R&R.  He was so happy to see them.  It was hard for me to hear those details, but I think Derek was glad to hear them.  i have not gotten to talk to him abo t it because he was so sick.

Hopefully, we are back on the road to recovery.  I am tired of the roller coaster.

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