IMG_1622Oscar had a great night, sleeping a good chunk, but this morning he’s lethargic and heavy-lidded, barely able to respond to simple questions. His belly is distended and he’s sweaty and lightheaded. He’s not that interested in liquids, even diluted apple juice, and we had to coax him to lick a grape popsicle. The abdominal x-ray shows an impressive amount of gas. (But no stool!)

The surgical team and PICU staff have been in and out of our room all day. I keep finding new ways to say: This is not normal! Oscar never refuses juice and popsicles! He is able to say his whole name and his pupils look okay, but he didn’t want to tell the nurse who the Oakland A’s just swept, and I can barely understand him when he does speak. I’ve scanned all the PWS medical information that I brought with me and repeated all my concerns to the PICU doctor. He ordered some blood work to make sure we weren’t dealing with something more serious…but the best medicine, everyone agrees, is to get Oscar walking.

So with the help of the PT and our nurse, we sat him in the chair for a bit, watching his blood pressure and trying to keep him alert. The Child Life staff stopped by with a rolling cart of toys — science kits, art projects, Star Wars figurines, and sports balls. With much coaxing, Oscar opened his eyes a crack and pointed toward the basketball.

And then we got him up to walk. With the physical therapist supporting him on one side and the nurse on the other, he labored down the hallway. Paul followed behind to catch him if he passed out, and I trailed with the wheelchair. He pushed through though—of course he did—and made it all the way to the end of the hallway again.

The medical team has a couple more ideas to help move the gas along, and we’re hoping the lightheadedness will resolve with that. Until then, keep him in your thoughts. I’ve not had a chance to respond to all your comments but I’m reading them to Oscar when he’s responding, and he’s feeling so supported. He’ll get through this, that’s just who he is.




27 thoughts on “Struggling

  1. Oscar – you have that strong kernel inside you. We send love and hugs and when you’re ready to enjoy some music, hope you’ll like the songs we sent! ❤ P, M, & J


  2. I appreciate Oscar not gloating about that A’s sweep! (Went to the Rivercats game a couple of weeks ago and had flashbacks of Leah and Oscar holding hands across that bridge :)) Freemans are sending good healing thoughts. Love from us all.


  3. Oscar is a hero… those small walks are so powerful. Keep up the great work, we are rooting for you!


  4. Sending you all so many hugs! We’re actually in Hanover right now, so you are very much in our thoughts. Will be watching your posts for improvement and better days ahead. Oscar is a fighter for sure!


  5. Thanks for keeping us updated, Mary, even on “speed bumps” (hoping). Oscar is certainly one determined individual, & we’re sending hopes/wishes for smooth(er) recovery (for him & yourfamily).


  6. Great to see you again today Oscar! You are showing great courage by getting up and walking! Keep it up and you will be recovered faster than anyone expects! I am looking forward to playing games with you, and then mini golf ! Love, GrandPa


  7. Oscar: You are amazing! Very glad to see that you’ve been up sitting and walking. I know what a hard worker you are, you’ve got this! Rooting for you!


  8. Oscar, you don’t know me but I was friends with your mom and Dad at Dartmouth and know how much love they have for you and each other. I also know that they are so strong and you have clearly gotten a lot of that from them. Keep on going. Each step is a step further on your path. Love to you all, Mary and Paul and thank you for sharing.


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