Day 56 - Weaning off the morphine

     Evan's procedures this morning went well.  The doctors extracted spinal fluid for analysis of the WBC counts, administered chemo and did some clean-up/maintenance on his ankle.  We're still awaiting results on the WBC count, but the doctors were pleased with how his ankle was healing and only had to drain some fluid from it.  There was a fair amount of swelling in his foot yesterday which prompted this add-on inquiry, although I think Cristy and I were to blame for this because we kept him upright for a good part of the day yesterday.

Pre-op for latest spinal tap and ankle examination.

     We're continuing to see a reduction in fevers, although I make that statement with a bit of caution.  With the surgeons opening him up today while under anesthesia it would be completely normal for him to have a low-grade fever.  Factually speaking his last fever was at 4:30 a.m. on the 10th.  The high temps he's exhibiting now usually level off around 100 degrees fahrenheit, which is again another step in the right direction.
     The medical team continues to lower his morphine drip and plan on pulling it altogether either tomorrow or Monday.  Because he had his ankle examined this morning they decided to leave it in place for now.  His blood pressure figures are more in line with a child his age and that's very reassuring for us.

Another day in The Zone at CHoA.  Cristy selecting a gift basket.

     With all of this progress Cristy and I are encouraged by how he's looking and responding.  His appetite is still non-existent.  The doctors have added a couple new drugs to suppress nausea and stimulate his appetite.  They're giving these drugs a couple of days to work before deciding whether to put him back on TPN or not.  Some of the resistance to eating is most likely due to the vomiting that accompanies most of his meals.  The c-diff and one of his chemo drugs cause vomiting so it's unclear right now which one, if not both, is the culprit.
     Cristy, Evan, Nolan and I met with a family psychologist today.  Evan is becoming quite gun shy from being in the hospital so long and the medical team felt that a meeting with the psychologist was in order.  We discussed how he's doing, how we got here and learned a couple of techniques to try to help with his anxiety during needle pokes, administering drugs or ahead of procedures.  My poor son has been through so much that I can't blame him for getting nervous.
     I wanted to wish my baby boy Nolan a happy 2nd birthday!  I took him shopping this morning, picked up his Paw Patrol cake and met up with Cristy and Evan at the hospital to celebrate.  Cristy is taking him to Catch Air later to burn off some of the cake calories.  I've said it before, but we're so lucky that he is carefree about everything.  His disposition helps make a horrible situation a little easier to manage.  Nolan's laugh almost always puts a smile on my face, even during tough times.

Nolan and I getting ready to celebrate his big day.

Nolan having fun at Catch Air.

     Wrapping up today's blog with another song that has motivated me throughout this journey.  The song is Lean on Me by Bill Withers.  I dedicate this song to so many people that have helped us over the last 2+ months.  Even if I haven't bent your ear that doesn't mean this song isn't for you.  The outpouring of support has provided us with strength during the tough times, so I close out today with a huge Thank You!