Day 515, LP results

Preliminary results from Hunter's Lumbar Puncture came back this morning.  The viral studies will be a couple more days, but we found out he had elevated amounts of protein in his spinal fluid.  This told the neurologist that Hunter has something auto-immune attacking the myelin sheath, the fatty covering that wraps around and protects nerve fibers.  The medical diagnosis was CIDP (Chronic Inflammatory Demyelinating Polyneuropathy).  It explains his arm and leg weakness and also the increased tingling and numbness in his hands and feet.  The treatment for the nerve problem is exactly the same as the treatment for hemolytic anemia.  We are thankful beyond words for that.  His steroid withdrawal pain is much better now that the steroid is bumped back up to 60 mg.  We pray it doesn't return as he eventually decreases his steroid dose. 

 He arrived back in his room yesterday after his LP about 5:30.  He had not had any of his meds, food, or water since breakfast.  Post procedure he was supposed to be flat on his back for an hour before he could sit up to eat.  Then he had another 12 hours flat on his back to prevent a spinal headache.  It was not a comfortable night to say the least.  But he made it through the night, and he has had no sign of a spinal headache today.

The first part of the treatment for his anti-immune issues are steroids.  The second is IVIG.  He will get his second dose of IVIG tonight and continue for the next several nights.  Depending on how his nerves react he might get another scheduled dose of IVIG on a weekly or monthly basis going forward.  First the auto-immune destruction needs to stop, then his myelin needs a little time to repair itself.  Then he will show improvement in his muscle function.  Without his nerves telling his muscles to move, his muscles just aren't going to work. His right arm is still way weaker than the left.  At this point, we're just thankful he has some function still in his left arm.  His response time is just much slower than normal.  Thankfully, his platelets and hemoglobin held today at 8.8.  My prayer is that his nerves are quick to heal.

Hunter hasn't had any tests today.  His IV from clinic on Thursday was getting sore, so someone from the IV team came to start a new one.  Hunter has developed a bit of a phobia of missed IVs {completely understandable} and we try real hard to get them done on the first try.  Nurses on our floor are awesome in every sense of the word, but patients on the floor have central lines or PICC lines, so they're not in practice.  He should be fixed up for the next several days now.

Occupational therapy also came by to check on him.  She brought some adaptors that help him grip his silverware and showed us how to safely walk with him if his legs were to give out.  He just looks really clumsy right now.  His feet are completely numb.  Combine that with weak muscles and we need to take great pains to keep him from falling and hurting himself.  After working with him, she was impressed.  He is just simply incredible.  If you think about not being able to lift your right arm, it strips a lot of your independence away.  I hear often that Hunter is inspiring.  Multiply that times 100, and that's how I feel about my husband and his resolve.

Pray for Hunter to be peaceful and restful for the rest of the weekend.  Our rounding doctor again blessed us with words we needed to hear.  The neurologist had just left after giving us the CIPD results, and we told our transplant doc that another diagnosis was really hard to swallow.  He told us that this wasn't a new diagnosis, but that it's all one total body auto-immune response to a bit of his "old tissue" that survived chemo.  That was just what we needed to hear.  Transplant is a complicated and amazing procedure.  Please join us in praying for peace, healing for his nerves, for protection from infection, for antibodies to be calm, and for strength beyond anything doctors could expect.