Thursday, August 12, 2010

The Crazies

CRaZy! is what William's hospital room is like when his four brothers, aunt, and uncle come for a visit. Let's just say that today the hospital has 5 fewer chocolate milks and 5 fewer Sprites. Oh, and a few less boxed OJs too! They don't know about the freezer stocked with ice cream cups and popsicles. Thankfully we didn't have a roommate at the time because it was loud and we filled that side of the room with folding chairs! It was good to have them all together and to be able to share in some of the hospital life. I want them to be able to have something to relate to when we tell them we are at the hospital.

William woke up this morning quite nauseated again and vomiting. I don't understand why, but evidently he was on a single, large dose of Zofran (for nausea) a day. He's always had continuous doses and that's what I thought he was getting, but evidently I missed that one this time. It won't happen again. The doctor switched his dosing to be continuous so we could stay ahead of the nausea instead of chasing it. Life improved after that, but eating and drinking is still a challenge. His Cytoxin (chemo drug) is very hard on the bladder and today urination has been very painful. His I.V. hydration was increased to try to flush it from his system more rapidly, but then hydration had to be decreased to avoid over hydration. He is done with the infusions of the Cytoxin so hopefully things will improve with time.

Today I also had a "Mommy moment", but not the kind you probably think I had. William K. was discharged yesterday and this morning we got a new roommate. He is 9 or 10 and has a blood disorder, Aplastic anemia, which means his stem cells don't produce enough blood cells. I'm learning more about it as this is the second roommate we have met with the same disease. It is very serious and deadly if not treated and treating it can also be difficult. You can google it if you want to know more.

He was in the clinic this morning for a check up, but due to unexplained and worsening pain, he was admitted for observation, labs, and transfusions. After determining he would be staying overnight and his pain was under control for the moment, his mother left to go home and pack a suitcase. While she was gone he slept and the nurses checked on him often. I also checked on him and helped him with his lunch tray. Then he fell back asleep and I went back to sitting with William. Suddenly and quietly, he awoke and without saying anything to us, had the maturity and presence of mind to push his nurse call button and tell the nurse he felt numbness. Never a good sign, right?

We soon had several nurses coming in and out and examining him. Then a doctor arrived and he was taken for scans. He was asking for his mother and starting to cry. So was I. My heart was breaking for him and I imagined the fear he was probably experiencing (diagnosed one month ago). My heart was breaking for his mother who wasn't there to comfort her son. My mothering instinct kicked in and I just wanted to hold him, stroke his hair, and whisper comforting words in his ear. William was asleep through the whole ordeal. As they were wheeling his bed out, I pulled a nurse aside to make sure his mother had been called (duh, probably had been done long before) and asked if I was needed to go with him and hold his hand since my boy was sleeping. I probably sounded like some crazy mother and doing that would probably break all sorts of ridiculous HEPA rules. I was assured a nurse would always be with him, but that's never the same as a mother (even though the nurse is probably a mother too). I know, how is a stranger any different or better? It was a "mommy moment". I wanted to be his mommy figure when his mother was unable to, if just for a moment. It made me so grateful to be able to always have someone with William in case the unexpected ever happened.

He never came back. He was transferred to the PICU. When I asked about him, the nurse didn't know the scan results (or couldn't tell me due to privacy laws), but agreed when I asked if it was probably a bleed somewhere, likely in his brain.

I'm grateful for modern medicine and miracles. I grateful for healthy children too. I grateful for crazy days that remind me of the power of motherhood.


  1. oh how heartbreaking! i'm so grateful you or someone is with william at all times! :( it is such a powerful thing to be a mother. what a blessing.
    i love you julies! every time we pray - and i mean every time - if someone, forgets to bless william...soren shouts "dont foget to bwess wiyam!" and we always go back and do it :) we all love you and are pulling for you all!!

  2. Oh, that just makes your heart go out to him. I think that we've all had a moment or two like that (where we feel helpless for a child in need). I just can't imagine one that would make us feel any more helpless that that. Children are so understanding though, and I am sure that he felt the willingness and love emanating from your presence. My mom is a nurse and has told me some of her most spiritual moments are those that involve these sweet spirits in need. You were there for a reason and he was blessed. I am so glad that William is surrounded by those blessings too!

  3. Crazy is normal at times, and I'm sure Will loves the moments of normalcy. It will be interesting to see what the other boys remember as the years go by about Will's hospiotal experience. Do you think it will be more than DS games??