Tuesday, September 28, 2010

Mama Said There'd Be Days Like This

... I just never imagined this one.

Today's plan was to settle in at the hospital, have some labs drawn, and get an NG tube (up the nose and to the stomach) to get the nasty meds down that are used to help "clean out the system." William was prepped by me as well as the Child Life specialist for the tube insertion, but was still nervous and scared. The bribe/incentive of Skittles worked a bit of magic---sort of, but it was short lived.

Once in the procedure room (his actual room needs to be a "safe" place), it took over 30 minutes trying to calm him down enough to even attempt to get the tube in. He was very upset he had to be awake for it and kept begging for anxiety medication. Yeah, I'm not sure if it's sad or funny that he's had enough procedures and meds to be requesting some powerful ones by category and name.

The tube got in. He was mad. Evidently, it hurt "one millionth millionth" more than we had promised him. After being wheeled back to his room, I was banished from the room. He wanted to be left all alone. He didn't want me or the nurse in the room. His only request was the TV remote! Ha! I was grateful for the breathing room because the stress was thick for all parties involved.

When I was allowed back in, he was still upset, but wanted to be comforted. He had a bad headache (from the screaming and crying). After some Tylenol he settled down for a bit and then something set him off and he started throwing up, including his feeding tube. The poor guy was hunched over a bucket with a tube hanging out his nose and mouth. The nurse had to come and pull out the tube and that wasn't pleasant. After some long negotiations he agreed to try to drink the awful tasting stuff (as opposed to the alternative of getting another tube), but the catch was that it had to be finished in 30 minutes. A stressful 30 minutes came and went and William failed miserably to consume even half the required amount. He became so stressed and anxious at the prospect of another tube placement that he started vomiting again and threw up everything he had just consumed. The surgeon came in worried because we were running out of time and didn't want to cause a delay in surgery. She decided to give him Versed to help his anxiety and remove any memory of the repeated attempt at an NG tube placement. However, due to a recent change in hospital policy with Versed, William had to be moved to the PICU to receive the silly drug.

Once in the PICU, William was very relieved to be getting some sedation, but was nervous that he still wouldn't be all the way asleep. William's arms and head had to be held to keep him from squirming. The surgeon attempted twice to get the tube in one nostril. Each time she tried a different type of tube, but the nature of William's nasal anatomy kept the tube from bending properly to move down the throat. The other nostril and the third attempt proved successful. We got his meds all down and although he's a bit upset and won't talk to us right now, he won't remember it in the morning.

So today was not fun. The worst moment came when William understood he was going to have to get the tube again. In tears he said, "I hate my life! Why can't I just be a normal kid?" I wanted to cry. This really made me realize how aware he is of his quality of life right now. Yet, he doesn't complain very often. On a regular basis, I vent to Ryan, my family, my friends, and this blog. Who does he vent to on a regular basis? He doesn't. His daily existence is full of restrictions, precautions, and doing hard things that are hopefully supposed to make his life better, but haven't quite yet.

William, I don't want a normal son. I want YOU because you are brave and strong and extraordinary! You are a fighter and a peacemaker and a reminder that we can all do hard things and be successful. I love you, my sweet William!


  1. I'm on Team Will, I hate this too! I'll pray and eat chocolate all day!

  2. You are all on my mind today...sending positive, healing thoughts.
    Mrs. Jones

  3. Oh thank goodness yesterday is gone. today is going to be amazing and much better. Big HUGS

  4. We are so thinking of you all, we are saying extra prayers, eating chocolate and I will have to get some skittles if that is what makes anxiety better.

    The Elmore's

  5. praying and wishing i was there to give you a hug jules. you are the best mother i've ever heard of. you are totally inspiring to me.
    i love you!!!

  6. I can't believe how strong you and William are-I don't think we would have even made it out to the car. You are constantly in our thoughts and prayers.

  7. Lots of people here at MWH thinking of William today and praying for a "better than expected" surgery.

  8. We've been thinking of William all day. You're all in our prayers. Hope everything goes so smoothly.

  9. You have been our thoughts so much lately! We will be saying extra prayers for the surgery. I hope you know how many people are pulling for you. We love you!
    The Lambs

  10. Oh Julie, I'm so sorry. What a rough day. I hope that plenty of strong meds (for pain AND anxiety, if needed) make recovery from surgery a bit more bearable for your sweet William. Today we've been praying for skilled hands and sharp minds for your surgeons, a peaceful calm for you and Ryan, and strength and healing for William. Thinking of you all.

  11. I hadn't read this blog before the other one. I was having a heard time to read the blog from the day of surgery without crying. This one did make me cry. He is a strong, brave sweet boy, and I love love love him!

  12. Oh, Julie. How horrible for William! I cried though this one, too, as Remae did. I don't know WHY they don't just trust that the person (yes, even a child) knows best what they need and how they will handle things. Then poor William wouldn't have had to go through all of that. It breaks my heart. You amaze me, however, in how you handle these things!! Truly, you do!

    (P.S. I know you're probably sick of hearing my stories, but for the record...My mom's worst part about her recent surgery was the stupid NG tube, too!)