Wednesday, June 5, 2013

Out of the PICU, up to the...

Here we are, our home for the next month or so. Today started off encouraging, with our PICU medical crew talking very positively about Watts' progress and recommending that he be moved up to the 9th Floor (which is, if we're speaking plain, the kids cancer floor). Prep went well and Watts seemed relaxed and mostly comfortable breathing on his own and coming off of the heavy sedation and pain killers.

[Let me pause here and say that it was quite sad saying goodbye to the nursing staff in the PICU. They are incredibly skilled, caring, and attentive, and we were constantly amazed by their work ethic and compassion. They tangibly loved Watts above and beyond expectation. We may actually end up being friends with a couple of them!]

We were moved up to Floor 9 around 2pm and shortly after that Watts started becoming more agitated and unable to be comforted. It was strangely similar to the symptoms that actually started all of this. Unable to figure out exactly what was causing the discomfort, the new nurse staff gave him some morphine and began the scheduled blood transfusion (trying to raise his platelets a bit before the new chemo treatment begins tomorrow). Watts continued to get worse with his right eye becoming red and swollen and eyes sort of darting and crossing.  We had been telling our new nurse that this wasn't normal, but at this point we called the main desk and said we needed some help and described what was happening. In about 5 minutes there were 10 or more nurses, med students and residents in the room. They immediately stopped the blood transfusion and morphine, consulted again with our doctors from PICU, and came up with a new plan for getting Watts to feel better. They also determined that a lot of what's happening is basically withdrawal from the sedation and painkillers he's been on. Apparently they weaned him from those medications a little more quickly than they should have. So he's now on methadone to help him transition to be sedation-free.

[Sidebar: one of the scary things about being out of the PICU is that it feels like we're much more "on our own". For the past 9 days we've been in a glass room (literally!) and had all variety of medical staff constantly checking in, with a nurse assigned only to our room. Now, we are making more decisions, watching and determining for ourselves what significant changes are happening with Watts. We are the ones reminding the new staff what's been going on over the past 9 days. Of course there is communication between the departments, but on small matters our responsibility seems to have ramped up a lot.]

Unfortunately, in all the shuffle, his NG tube (which goes in through his nose and down into his stomach) had come untaped and slid partially out. It took 4 excruciating attempts to get a new one in. I think these were some of the hardest moments yet-- having to physically restrain our son while a tube is pushed down his throat and listening to him gag and scream. It's a feeling I wouldn't wish on my worst enemy. It's heart-wrenching to know you'd trade places with your child in an instant, but that it's impossible. It's obscene that a 10 month old should need these sorts of physically and emotionally altering treatments. Watts, our remarkably friendly baby who knows no strangers, is afraid of each new face that approaches. After waking up from 8 days of sedation, his new world is full of people pushing and poking at him, a body that hurts and can't be comforted. It's a cruel brokenness, one that we wish we could take on for him, and we're grieving these losses of innocence. Lord God, have mercy and give us some strength.


  1. Praying for your sweet family and precious Watts. May our God of comfort, strength and peace surround each of you. May He meet little Watts right where he is and hold him in His mighty all powerful hands. Praying praying for your little man this night.

  2. Praying that the Lord will give you strength and wisdom to advocate for Watts as it is needed. I know that can be the hardest part. My friend Laura used to say she wished she could just relax and trust that everyone around her knew exactly what they were doing and would do it right. She said it was the most exhausting thing about their stay at CHOP with Gwen...

  3. Heart-wrenching. Praying for you all.


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