Our New Normal

Mommy and Oliver

Well, Mommy got her wish...Oliver slept from 7:45 pm-6:30 am in his own bed...woke up soaked from head to toe.  The ACTH was already starting to make him sweat and the extra fluids following the Rituxan infusion didn't help either.  We decided to go back to double-layering the waterproof pads.  One under the sheet, one over with a receiving blanket over that.  We also found we needed to air out his pillow each time he slept.  It was a really great morning, though, when I heard that little voice on the monitor saying, "I see mama! I see mama!"  

The hospital had ordered a nurse to come by the house to check on us that morning.  I'm still not sure why she was there- neither was she.  She thought we needed injection training, but we had done that at the hospital.  Well, at least we accomplished identification of one reason the health care system is less than optimal.  I was able to hang out through her visit, but I had to leave for work.  Taylor was on his own and I was nervous for him.  

Somehow, they made it through the (half) day.  When I got home, Aunt Carla was playing with him...Ollie loves her.  My new norm when arriving home from work began that day.  First, before even leaving work, I sanitize my hands and arms.  Then, when I get home, I immediately change all of my clothes and re-wash my hands (oh, and this isn't new- my mom has always insisted- but, I take my shoes off outside).  Only after completing these steps do I love on my baby boy.  

That evening, Aunt Sarah came home with Nana and Papa.  She was so anxious to see Oliver,  she didn't even want to eat lunch after graduation so she could get home faster.  Ollie loved on his Auntie and really enjoyed the company.  After meds, we went upstairs for bedtime and the best moment of my day...he tried to sing along with "Jesus Loves Me".  So great to hear that little voice.  

Sunday 4/28:

Twelve hours of solid sleep!  After morning meds, we played in the basement doing all sorts of re-learned tricks...turning knobs, pushing buttons,  (sort of) stacking blocks and playing with his zoo and animals.  All of this he did while lying propped on a boppy, like an infant while I cleaned up all the toys that were scattered around from his last real play time- several weeks ago.  

Oliver seemed to be burping a lot and he threw up a little, I wasn't sure the Zantac they prescribed to prevent GERD from the ACTH was working enough.  It also seemed like his sleep was less peaceful.  We planned to call the doctor on Monday, but honestly, I didn't know where to start.  The neurology team at UofM was the hardest to get ahold of- we had to leave a message with a department secretary who then relayed it to his office, where they would then call us...clunky.  The Dr P and Liz allow us to communicate via e-mail, which is nice and convenient, but they can't do everything from a distance.  At the very least, they do recommend who we should follow up with.  In this case, they directed us to our regular pediatrician. 

Monday 4/29:

We had to start figuring out how our mornings would look.  Oliver's meds needed to be given around 7am and I needed to leave for work by 7:45 each day.  The ACTH gel is refrigerated and has to come to room temperature before it can be drawn-up for injection.  Thank goodness Oliver takes the oral meds like a champ.  He literally sucks the meds out of the syringe (well, we had a few messy attempts first and are SO thankful that the benedryl he now takes on infusion days is given through his port- he still won't touch that stuff).  Ollie is also amazing with his injections.  He fusses a bit, but never cries. At this point, his was still pretty weak, so he couldn't struggle much.  But he could have cried if he wanted to.  Such a great kid!  He said "more please, thank you dada" today and went for a walk.  He waved at the dogs and had a great time.  He got a sponge bath from Nana and Mama at night...he still had steri-strips on his port incisions and couldn't be submerged.  It kind of made me laugh...we were set up on the kitchen table like we had a 3 day old baby we were bathing for the first time!  Oliver, however, was not a fan.