Above is the only photo I took of Charlie today, right after he fell asleep at around 9 pm. It was a day of transition—at least for me. Wrapping my brain around Plan B. You know how when you’re flying to Europe and you get on the plane knowing it’s going to take around 12 hours or so and you hunker down in your seat and before you know it you’re there, the trip didn’t seem so long? But then sometimes when you’re flying somewhere much closer, say from L.A. to Chicago, and by the time the plane lands at O’Hare four hours later you think, “If I had to spend five more minutes on this plane, I’d put a gun to my head?” I guess that’s kind of where I was at today: I thought we were flying to Chicago, but apparently our plane is heading to Europe. I just need to get into that mindset of the longer flight.
It didn’t take long this morning for a resolution from yesterday’s angst. The neurosurgeon walked into Charlie’s room at about 8 am and immediately said we had to give him the two weeks of antibiotics before he could internalize the shunt. The ironic thing was that the staphylococcus I was obsessing about yesterday DID turn out to be caused by a contaminant, that wasn’t the issue at all—the real culprit was this extremely slow-growing bacteria that the doctor was worried about all along. The thing is, if Charlie wasn’t scheduled to have a shunt put back in his body, it wouldn’t be something they’d worry about—it’s apparently a very low-grade infection with no symptoms. But now they think that the reason the catheter depositing cerebrospinal fluid in his peritoneal cavity stopped working was because of this very slow-moving and usually harmless infection—and that if they put a new shunt in before attempting to really clear that up, we’ll just be back in the PICU in a matter of time with the same issue. There’s more but that’s the best I can do at explaining the situation—I hope any medical people who are reading this aren’t cringing at my description.
Truth be told, in many ways, the not knowing and hoping is way worse than the knowing even if the result is not what you wanted to hear. While I’m far from happy that Charlie has to spend two more weeks in his intensive care bed connected to his external ventricular drain without being able to move very much, I accept that this is what we have to do and I know we’ll get through it fine. Of course there are a million things to worry about during that time but I’m reaching that place that I had to find when we were in the NICU where I’m not exactly squashing my natural curiosity or desire to know the specifics about my son’s treatment, but I have to be a little bit more reserved in my questions, and start to think, “Is this something I really need/want to know? Will asking this question help Charlie in any way?” Believe me, I will always speak up if I feel I need to, but in situations like this there are also many times when you absolutely need to stand back a little and put your trust in the people who are saving your child’s life with their expertise and skill.
Charlie had a few heartbreaking moments today where he freaked out and wanted to get up and “play with my garbage trucks on the floor” but even at three and a half he seems to understand that he just can’t do that right now and that he has to stay in bed. The nurses told us about some kids his age who have to be restrained and that is a horror show that I’m so grateful we don’t have to be part of. Charlie seems incredibly accepting of his situation most of the time, he really is an inspiration.
Onward.
Vivi & I talk about Charlie every day & she wants to see him soon!! We are sending so much love!!!
Posted by: Kristen | February 18, 2013 at 11:02 PM
Oh, Danny! I'm so sorry to hear the news. However, I love your description of the flight times. As a frequent traveler, that makes so much sense. Thankfully, Charlie IS 3 1/2 and not younger so he has some understanding of what you're saying to him. Sending big love and support to all of you.
Heather & Justin & Cassian & Raj
Posted by: Heather Muller | February 18, 2013 at 11:20 PM
This is so honest and touching. Stay strong. Sending prayers!
Posted by: Karen Clausen | February 19, 2013 at 12:02 AM
It's hard enough for an adult to lay in one position in a bed for a day, much less three weeks. Poor Charlie. But he's amazing and it sounds like his very conservative surgeon is, too.
Holding you all in my thoughts and prayers.
Posted by: Jane | February 19, 2013 at 12:10 AM
Thanks for taking the time to write the updates for all of us. So sorry Charlie has to wait so long for his new shunt, but when it goes in, it will be perfect! Is Charlie allowed to use a tray table for the trucks? My son Jon and I are thinking of you- talking about Charlie, sending our best wishes each day.
Posted by: Peggy Shecket | February 19, 2013 at 04:26 AM
NOT knowing is almost always worse, than knowing. Now we all know how to focus our healing energies.
Wish I was there to cook you a lasagna!
Posted by: Shari | February 19, 2013 at 04:32 AM
Of the many things that make Charlie special, the fact that he has you and Kendall as parents has to be at the top of the list. It's incredibly special that you view the series of event in the way you do. It's a gift for you and Charlie too, and learning to accept things as they are is an invaluable lesson that will make his life infinitely richer in his present and future.
Posted by: Nina McDermott | February 19, 2013 at 07:59 AM
Is there something that all us cyber folks can do to help? Send some little thing to keep him engaged? Cards? Balloons? Books? Praying for him and your family.
Posted by: Julia Janzen | February 19, 2013 at 10:43 AM
So much love to Charlie, Kendall, and you, Danny. xoxoxo
Posted by: Sarah Morrow | February 19, 2013 at 03:21 PM
Prayers from TX. We did NOT tell WEEZ yet. Hoping all will resolve quickly. She has the pictures of Charlie from this summer in her day room area. She just had a great grand child in Dec. Thinking of you guys and love to Betsy and Brooke....
Posted by: Josh & Esther | February 19, 2013 at 05:13 PM
Sending so much love to you all from my heart.
Posted by: Liz | February 23, 2013 at 10:38 AM
My heart goes out, it is so hard to wait. you guys are all in this place of absolute radical acceptance and surrender since what other place is there to be? fighting reality just causes more aggravation and suffering, so you get to do as much self soothing and distracting every day. hope the Oscars help tonight! sending love to all three of you xo!
Posted by: susie specter | February 24, 2013 at 10:29 AM