Evelyn had a pretty good night last night. She slept off and on, watched a lot of TV, drank a fair amount of apple juice and seemed comfortable.  Her night nurse was also great!

Things changed for the worse around 6:00 am when she experienced her first muscle spasms.  I am trying to be as honest as I can on our blog about our experience and those 10 to 15 minutes she was experiencing the spasms were so horrible!  She would be calm and then her body would jerk and she would scream in pain.  Brian and I squeezed her hands and comforted her the best we could as the nurse tried to administer the muscle relaxants ASAP.  The calm and then the pain went off and on for a few minutes which felt like forever and we felt so helpless!

Muscle spasms are normal after SDR and they can last from a few days to a few weeks.  Everyone is affected differently.  Luckily the pain management team came in shortly after this episode and they have put muscle relaxants into her med rotation and we have some other meds on hand if she needs more help.  So far this hasn’t happened again to that degree. Thank you SDR Momma’s who talked me through this awful moment!

Evie has also been saying she feels like she is falling (dizzy) so someone has been holding her hand since this morning.  It gives her reassurance she isn’t going to fall.  This is a common side effect of her medication.

A gentleman also came in this morning to cast her legs for her new orthodics she will be getting here.  Evie was a super star!! He said most kids are trying to kick him or scream and she quietly let him cast her legs (takes 3 minutes to set) and we picked out some cool patterns for her new “Super Shoes” and night splints.

Later this afternoon her IV arm was starting to get puffy and we realized she had a blockage.  So the IV was removed and a team was called in to put in another.  Evie hates needles and was scared.   We were very worried she would fight and thrash and hurt herself so it was us and three nurses ready to hold her down.  She was upset but overall did very well.  Only one nurse had to hold her arm as another inserted the IV using an ultrasound.  My girl has been poked and prodded so much and frankly is handling it better than some of the adults I know would.

Since this morning anytime a nurse or someone comes in to check on her or see her back she gets upset (don’t blame her). She tells them to “Go Away!” or “I am trying to nap!!” At one point she was yelling “I want to go home…right now!!” A nurse asked if this was the meds talking and we laughed because anyone who knows our Evie knows this is something she would say.  We reminded her tonight that a lot of her family are nurses and that she likes them and that these nurses are nice too!

Dr. Park also popped in for a quick check up (he actually surprised me as we were just finishing with the new IV insertion). Evie was upset so it was a quick visit. He reminded me that everyday will get better!

Tonight Brian will stay with her. Neither of us really slept last night so one of us has to try and get rest. Hopefully I can sleep being away from her. Being in the hospital  (and in a room with a baby) really reminded me of our time in the NICU four years ago.  Vital sign checks, feedings, meds administered, hearing different code alarms on the speakers and trying to sleep.  Evie’s original “Day 1” was also the start of one of the hardest nights of my life.

But tomorrow is Day 2 and soon we will be at Day 5 and being discharged. We know this journey will have ups and downs, just like today. One day at a time.  For now Evie is comfortable and happy to be reunited with Chase, her hero.

She is my hero!