Screw-Up

We love Children's Hospital.  Everyone here is amazing -- kind, compassionate, skilled.  We feel lucky to have such a fabulous hospital so close to us where we can get top-notch treatment for Fionny.

But last night they screwed up.  Fionny is fine, but it was a big deal.

Here's what happened.  Fionn was scheduled to receive two bags of high-dose methotrexate over a 24-hour period.  The first bag started at 6 pm on Monday evening and ran until 6 am on Tuesday morning.  All went fine.  At 6 am yesterday, they hung the second bag of methotrexate which was scheduled to run until 6 pm last night.  All day our wonderful nurse kept telling me that we were "right on track," according to the pump.  The chemo dose should finish up at 6 pm as scheduled, and then it's just a waiting game to see how long it takes Fionn to clear the medicine from his system.

All good, all normal.  Conor arrives to the hospital at 5 pm, and we have our regular shift change.  I head home to be with Deaglan who has been with my mom this week (more on this in a minute).  Around 7 pm, I hear from Conor that there is a problem.  When our nurse went to take down the bag at 6 pm, she found that it was still heavily full of fluid.  Although it's common for there to be some fluid left in the bag when the 24-hour cycle has run its course, this bag was really full.  Heavy with fluid.  That's not good.

The attending oncologist was paged, and a flurry of investigations began to figure out what happened to Fionny's chemo cycle.  Had he been over-medicated?  Under-medicated?  Had the pump malfunctioned, or was it a pharmacy error?  What happened?

Fionn's main oncologist, Dr. A, was called and informed of the situation.  She made the quick call to stop the infusion since we didn't know how much methotrexate Fionn had received.  She ordered a diagnostic test of the pump using a saline drip.  The test revealed that the pump was working fine.  Pharmacy felt confident that they filled the orders for the drug correctly.  When medicines like chemo are at stake, everything is triple checked.  There are procedures in place to ensure that this kind of thing doesn't happen.  However, there isn't as much oversight in terms of the sterile fluid that is mixed with the methotrexate.  Based on Fionn's methotrexate levels and the amount that was left in the bag, the working hypothesis right now is that Fionn was given the appropriate dose of methotrexate, but it was then diluted in two times the prescribed amount of sterile fluid.  Because there was a significant amount of fluid left in the bag when the infusion was stopped, we can assume that Fionn got a great deal less of the prescribed methotrexate than is dictated by his treatment protocol.  The doctors estimate that he probably got about 77% of the methotrexate that he was supposed to receive during this round of treatment.  But because we don't know, we can't simply hang another bag of chemo.  It's too risky. 

I'm sure you are all wondering, as we were, what this means for Fionn and his treatment.  Dr. A assures us that this decreased amount of chemo will have no impact on Fionn's prognosis.  She told us that the treatment protocol has buffers in place for just this very thing.  We have no reason to think that this will have any bearing on Fionn's survival rate.

Still, our confidence has been shaken.  Why did no one notice that the bag was so much larger than the one that was ordered?  Why didn't anyone notice throughout the day that it was still so dramatically full, even when the pump was saying it was nearly done?  Why aren't the fluids triple checked in addition to the methotrexate?

Of course, I am beating myself up for not noticing that the bag was still so full at 5 pm when Conor arrived.  To be honest, up to this point in this journey, I have had complete and utter blind faith in this hospital that they are taking care of our boy in the best way possible.  I assume that when they tell me things are right on track...it's right on track.  Dr. A hates to hear it, but Conor and I both feel now that we have to be more alert.  More vigilant.  We have to check behind the nurses and doctors a bit more to make sure that Fionn is receiving the treatment that he is supposed to receive.  And that doesn't feel good.

In time, I'm sure our confidence will be restored.  The doctors and hospital staff are all taking it very seriously.  Everyone has been by to check on us to see how we are doing and what we are feeling.  A meeting will be set up soon with the head pharmacist and our whole team here to review what happened and how we can make sure that it doesn't happen again.  But we are a bit thrown, I'm not going to lie. 

On a positive note though, Fionny is doing and feeling great.  He is truly a little ball of energy.  His tractor is working great now (the front wheel was spinning a lot last inpatient stay, so I had to push him to get it to go -- not fun for the old back), so he is a little speed demon down the hallways.  We've met a few new friends and have gotten to see a few "old" friends too such as Sully who was here at clinic on Monday for counts.  Here is a pic of Fionn with a new friend, Michelle, in the art room.  They were building a castle for a queen dragon if you couldn't tell.

Fionn has also been great about sharing his tractor with other kids.  Even this little fella who came to visit on Monday night.

Ah, my Dex.  How I miss him so on these weeks.  I hate that my time with him is limited to about an hour in the morning (would be even less if the little punk would stop waking up at 6 am!) and an hour before he goes to bed.  I feel so disconnected from him.  It's hard.  I miss my sweet little man.

But the only thing better than being with Dex myself is knowing that he is with someone who loves him dearly like my mom.  Mom has been with Dex all day yesterday and today.  And she will be with him all day tomorrow.  No breaks.  Long, long, nearly 12-hour stint with a very active little guy.  She has been amazing.  Yesterday they spent a lot of time at the playground across the street (which still has some salvageable pieces of equipment on it).  Today they went to the "downtown" area of Kensington and then had a pancake breakfast at a little joint down the street from our house.  She seems to really enjoy her time with him, and I can tell that Dex is loving being with her too.  Thank you, Mom, from the bottom of my heart.  I cannot tell you how important it is to feel that our littlest man is in good hands during these crazy, chaotic week.  I love you so much.

That's about it for now.  As of now, we should be on track for discharge tomorrow afternoon or evening.  I'll update soon.