Sunday, May 15, 2011

Hospital vs. Junior High

What could make you want to repeat junior high? Does anyone want to? I was the new girl, we'd just moved from California. It was the '80s. I just got braces. Nothing is flattering about it or particularly memorable, except for the many embarrassing moments.

This blog helps me remember some of the things I would otherwise forget, whether I want to or not. The rest of the days spent in the hospital this week are already a bit of a blur. William spent most of it either in a morphine induced sleep or trying to manage the pain while awake. He did manage to briefly sneak out of his room with his medical student buddy, Josh, to play the Wii in the All-Stars room for 30 min. (A room for older kids to play video games or be on the computer.) Technically he probably shouldn't have left his room since his immune system is not fully recovered, but it was one of those things I just let slide for the mental well being of us both.

Each day we had hopes it would get easier. It didn't. Each day something different decided to make life complicated. And keep in mind that the infusions ran through the night, so most hiccups involved waking up. The infusions were often paused for an hour or two to administer albumin (blood product) and/or additional fluids. He received a blood transfusion one day before the infusion started in an effort to get ahead of the blood pressure issues. Unfortunately, we still had issues that night. He often hit temperatures just over 103 degrees. The toughest part was managing his pain during the night because he wasn't pushing his morphine button in his sleep. Imagine that! The nurses would usually give him an additional bolus of morphine during the night and in the morning as needed.

By Tuesday, William stopped eating except for sips of apple juice to take with his Tylenol and some watermelon at lunch time. He couldn't even be tempted with Jamba Juice. One afternoon his doctor came in and saw him with his watermelon and laughed saying, "No wonder you're not gaining any weight! Where are the calories?" William actually gained 5 pounds in the hospital, but it was all fluid retention and it has since well as 3 more additional pounds from not eating for nearly 5 days.

Thursday was a lovely day. The morning began with vomit, not a typical side effect to this treatment. But it was nice of William to do his best to add excitement to the day, my birthday. That evening, my boys called to sing me "Happy Birthday" and I had to hang up on them. I'm horrible, but it had nothing to do with my mood for spending the day in the hospital. Then my husband called back to see what was wrong and I had to hang up on him too. William had just woken up in a delusional fit and was sobbing. He insisted he needed a sticker right away. He wanted the kind he got when he arrived (he hadn't received a sticker when arriving). He was mumbling a bunch of nonsense, his fever was high, his heart rate racing, and the nurse and I were trying to figure out what he needed. She went and found a Snoopy bandaid and William insisted I hurry and put it on his hand. I did and he suddenly relaxed and all was fine. The boys were all in bed when I finally had a chance to call back. Memorable day.

William and I arrived home Friday night just after the rest of the family had left for the Father and Sons camp out. William and I were excited to have a quite house so we could sleep and rest. Unfortunately, neither of us slept well as my body was freakishly used to waking throughout the night and William was still waking with some residual nerve pain. I spent Saturday cleaning and starting laundry and getting ready for 5 dirty, tired boys to return from camping.

Today, Sunday, any associated pain from the treatment seems to have ended. He started eating a little, but only enough to continue causing me stress that it wasn't enough. I had to put on my tough mom, you're-still-my-son-with-the-same-expectations-as-before hat and tell him he had to eat 4 bites of lasagna before he could leave the table. This was a very lenient expectation compared to what I was enforcing with the others. He sat in his chair and cried and worked himself up until he suddenly threw up. I cleaned him up and said he was done. Then he asked dad if he could have some candy. Dad said sure. What? Was he not sitting at the table through this whole ordeal? He was obviously not thinking, right? I piped in rather quickly and not very amused and said, "No way. But you can have more lasagna." He declined and left the room. I'm bad cop today. A while later I agreed to make him one of my high calories milkshakes, but only because I'm desperate to get some nutrition in him. It is really hard to navigate parenting with a smart, sick child and very smart siblings soaking it all in too.

One day I'll look back on all this and have a lot of mixed emotions. I always thought repeating junior high would be an awful punishment, but I think I'd rather repeat junior high than this. I could change so much about junior high to make it better, but I'm not sure what I could change here to make it better. Like junior high, it's just one of those tough things in life we just have to get through and some how, down the line in life, we're better people.


  1. That was the theme of my Primary lesson today: how trials make us stronger. I even used you and William as an example. But what if we were content with how things were? Trials are HARD, and I'm so sorry you are going through this. You are an amazing example to many, though!! Here's to hoping for a better week... As always, I am here for you. xoxoxo

  2. The bitter makes the sweet more sweet! You are amazing and I'm sure you're not as awkward in Junior High as you profess.

  3. I loved the insightful post. You definitely have a tough job of navigating the whims of a sick child and enforcing routine and structure that any family demands. Good work. Here's to wishing the "looking back" comes sooner than later.

  4. Julie: First off, you have SUCH a gift for writing! Seriously- when all this is said and done, you should consider writing a book. I can just see it now...being advertised in my Deseret Books catalog! :)

    As for William, I'm so sorry he was in such pain...UGH! But I think you have done such an amazing job in finding these treatments for him and I have NO doubt they are working! Still, you all remain in my daily prayers. Hugs to all of you!

  5. What can I say? My son would have given him the candy, and shared a peices all around as well as for himself. I would have had one too. Oh wait a minute, that was in my life with little boys BEFORE I studied early childhood. I hope you've had lots of hugs and kisses for your birthday since. You deserve them. Here are mine for you, your boys, Ry and Will. XOXO

  6. Hi William, Julie and Family-

    We have been staying tuned to your posts, and want you to know we think of you often, and send you our warm wishes and prayers. We understand the treatment is tough, but it seems you guys are being tough right back. Spencer suggests drawing doodles on the pink barf buckets to make them more fun when you have to deal with them. We hope the treatment gets easier as time goes on.

    Love, Spencer and the Pihl family.

  7. Julile, Julie, Julie - Your recent post brought tears to my eyes. What incredible strength you all have. What a job, what trials you are going through. Hey I wonder how William would like a green smoothie - so nutritious and so you have a good blender? Throw in water, spinach, kale, chard, etc. blend it up and add some frozen strawberries, a frozen banana, frozen mixed berries, an apple, orange, lemon, etc. Yum....I think William would drink one of those and it would be very high nutrition. Go to I think she has lots of recipes on there. Our prayers are with you. Love, Nancy

  8. so sorry that things are so hellish. you are INCREDIBLE--i just can't even imagine the strength, emotional, mental, physical, and spiritual, to keep up with this. you guys continue to be in all of my prayers! xoxoxo

  9. I know it sounds trivial right now, but happy belated birthday. My Lizzie is reading the Little Prince for school, and it reminded me of us reading it in French where you, me, and Cindy Child celebrated our birthdays together, exactly one week apart from each other. Do you remember Madame Davis' favorite quote from that book? "That which is essential is invisible to the eye." I love that quote more and more as life continues to happen. This comment comes with lots of love and prayers for William and you.


  10. you're such an inspiration julie! so unselfish and so down to earth! love to you!