Switch of Treatment

We are definitely navigating our way through this whole ordeal, one step at a time.  But with each step and turn we seem to be learning more and more. 

Yesterday was a day of rest, biopsies, and an MRI.  But over all, spirits were high.  The fact that we were able to get Caleb to a steady level 6 pain for the most part was encouraging.  And for me...well, it is amazing how going home for a couple hours for a warm shower and stopping by Five Guys for a hamburger made me like a different person! It was just the pick-me-up that I needed.

Last night, as we were going to sleep, we were discussing the goals that the doctor has given us to be able to be discharged from the hospital in the future. 

1. A diagnosis 
2. Get off IV meds (only on oral meds)
3. Be able to walk to the bathroom from his bed  (about four feet).

Well, with all the tests we are just waiting for all these doctors to put it all together.  So the diagnosis is out of our hands...but they seem to be getting closer.  Getting off IV meds last night seemed like it would take days...he hasn't got below a level 6 pain while using the highest form of narcotic available.  And walking...well, he hasn't even stood up on his own in weeks so that seemed overwhelming.  We discussed maybe he would be moved to a rehab floor after the initial medical attention he needed subsided...and possibly be here for a long time still.

But today, well, we were awakened by a new specialist who deals with pain management.  Upon looking at his red, hot feet and consulting with Caleb, she concluded he has much small nerve pain and damage.  It explains why he has not been able to wear any shoes or socks for months, and why even a sheet over his toes would be excruciating.  She believes the narcotics are doing more harm then good on these nerves and that they are not made to treat pain of nerves.  So we have completely taken the IV drip out, eliminated all narcotics, and started an aggressive treatment plan for nerve pain.  She said by tomorrow his pain level should be improved.  We so hopeful about this, we went from thinking we will be here for at least another week or two, to perhaps days!  So we pray.

Also, we had an occupational therapist come in already today to work with him.  For days, Caleb has not been able to even dangle his feet over the side of the bed from pain of the pressure in his feet.  Well, he finally was able to! For five minutes he dangled, and then put on his own shorts.  So that is a start!

The thing I think that makes us most excited, is for the first time in a long time, the inflammation is down in his feet enough that we see small signs of veins beginning to appear!  They still look a complete mess, but we are on the right track we believe!

So we keep on going...one step at a time.  (No pun intended!!!) :)