First Hurdle

Charlie got through his surgery today with flying colors—they removed his VP shunt and he now has an external one for the duration of our hospital stay until everything is resolved enough to put a new one back into his head. In the best-case scenario, if no infection is found, that second surgery could happen next week. But our neurosurgeon was suspicious because of the color of the fluid that they drained so I’m bracing myself that there may be an infection and then he’ll have to wait until that is completely cleared up before they put a new shunt in because if they don’t, the plastic shunt and catheter will just get clogged up again and we’ll be back to square one. We talked to the abdominal team about the different options on their end for placing the catheter. If they don’t feel that they can find a safe place in the peritoneal cavity because of all the scar tissue, they may direct the catheter to Charlie’s gall bladder at which point the cerebrospinal fluid draining from his head may be released through his bile or they could even direct it into a vein to be absorbed into his bloodstream which doesn’t seem like an option they want to take unless there’s no other choice. We’ll see.

One of the hardest parts of the day was not being able to go with Charlie into the operating room. We were able to go as far as pre-op (I’ve been in that ice cold crowded area at Cedars many times, with Charlie for his many surgeries as a baby and when I had my own kidney stone surgery a year and a half ago) and it just shattered me when Charlie kept asking us to stay with him. We had to explain that we couldn’t come with for the last part but Dr. Danielpour was great with him as they wheeled him away and distracted him enough that it went much better than I anticipated. It was actually harder on us. As Charlie was wheeled into the operating room and we were walking out of pre-op to the waiting area, there was an Arab woman who was there with her elderly mother who was having surgery. She had been watching Charlie and she saw Kendall’s face when they took him away and just opened her arms. Kendall collapsed into them, sobbing and this stranger comforted her and assured her everything was going to be okay. If ever there was a moment where I was convinced that we are all the same and that these insane squabbles different groups create with each other are completely unnecessary, that was it.

The surgery lasted about an hour and a half and it was very hard for Charlie when he first woke up and realized he had even more tubes and things coming out of him and that he wasn’t allowed to move very much. He cried and freaked out for a while but is such a trooper that within a few hours he was charming the nurses again with talks of garbage trucks and recycling and at one point he sang “Spinning Wheel” in its entirety with such gusto and so loudly that I was worried his external shunt was going to pop out! For those who aren’t on Facebook and didn’t see his earlier rendition of that tune (he knows even more of the song now!), here’s the video I posted a few weeks ago:

 

 

We’re settling in for the long haul and realizing that for a little while once again Cedars will be our primary existence. Again, there are such great people there—so skilled and kind—and we are so grateful for that. But I do have to relate one incident from this morning before surgery that I now find so funny it really must find its way into one of the network hospital dramas. There is a lovely woman who volunteers to wander through the PICU (and I imagine other parts of the hospital) with her guitar and play music for the children to make them feel better. All of the children in the PICU seemed particularly calm this morning but we watched as the guitar-playing woman went from room to room and each child burst into hysterical tears the minute she started playing. Charlie, who obviously loves music, followed suit. I enjoyed this woman’s rendition of “My Darling Clementine” very much but within ten seconds Charlie was inconsolable and we had to ask her to stop. So sorry, lady—if it were up to me, I would have had you do an entire Carole King concert!

Completely exhausted so will sign off for now. Thanks for all the prayers, good thoughts, messages, and visits!

Comments

[Julie Schreiber]

I am so glad to hear that Charlie came through his surgery so well, but so sorry that you and Kendall and Charlie have to go through such a difficult time. I will pray for a speedy and full recovery for sweet Charlie, and I am sending healing vibes and thoughts, along with much love, to all of you. Thinking of you.

[Jane]

I love that video, including the two more garbage cans! at the end. But the picture of Charlie all tubed up is so sad.

Will this next shunt be permanent, or does it depend on how it goes?

[Jan]

Sending love and healing thoughts to all of you. It seems to me Charlie is like a little love antenna, broadcasting and receiving positive energy to and from the world....

[Danny]

All of the shunts are intended to be permanent, Jane, that is, there is no intention of ever taking them out--the tubing is coiled so that it can grow with him--but, of course, they have to replaced if they malfunction.

[Michelle]

So happy it went well. I couldn't wait to get out of bed and grabbed the iPad first thing hoping you posted. Awesome story about the Arab woman and yes Danny, we are all the same. There is no color to love, it is clear and evident all around us. We will keep the candles burning. xoxo

[Emily Barton]

So glad he made it through. The woman who embraced Kendall sounds like a gift from God. We're still praying for all of you.

[Shari Pergricht]

Tears in my eyes.

[Peter Hastings]

Thinking of you guys!! (Tears in my eyes ditto)

[Maya Hagege]

Do be gentle on yourselves. It is always harder on the family and friends that on the patient. I gave an update on Charlie to my husband, recalling my own VP shunt surgery--"He's got an external shunt now. Remember I had one of those?" The cloud that passed across my husband's eyes remembering that time reminds me that it was indeed hard on him and the entire family. I don't have that cloud. I had no control over what was happening to me and in a way was just along for the ride. Granted I wasn't a child when it happened, but Charlie is a resilient fellow and maybe you can take comfort in that his memory of this will be a much softened version of yours. Continuing to send positive vibrations your way.

[Liz Keyishian]

OH Danny, so glad he came through smoothly. Thank God for your sense of humor. When I gave birth to Gabriella at Cedars, a small madrigal group came in and sang about "Little hands, little feet" and we all burst into tears. Love and prayers to you and Kendall and Charlie. xoxoxoxoxox

[shelly]

oh gosh, I just read about luscious charlie! so sorry all of you have to endure this. Love to you all. shelly. ps...I'm putting him on the Mi Shebeirach list at temple...xo

[Marjorie]

I cried when I read about Kendall crying in the woman's arms so I have to ask which kind of tears the kids were crying over Darling Clementine? I'm so glad there was someone there with actual arms for Kendall--not just our virtual arms. Even in the hospital bed, Charlie (I prefer Scoot) looks like an angel.

[Julie R.]

This is so sad, funny, and touching. Love to you all.

[Andrew Forsythe]

Charlie and Danny and Kendall,

We are all thinking of you and praying, wishing, hoping, and willing a full and fast recovery for Charlie. He is such a strong little guy (and such a charmer!)---we know he'll be OK.

He has the best parents in the world, and he gets his strength from them.

Love from all of us,

Andrew and Rosalinda and all the kids (and grandkids, and dogs, etc.)

[Kate]

My darlings! Is it wrong to say in this context that Charlie looks just ADORABLE in the hospital? God, he is a good-looking kid! And I love Danny's writing. I have every faith that this is another bump in the road--horrible bump--poor kid! Poor you! But I'm not worried. Honestly, those guys know what they're doing! My thoughts and prayers of course. Love, Kate

[Almeta Tai]

It's hard to see a family member in this condition, especially if it's your own child. I bet you'll do whatever it takes to pay for all the treatments and medicines he needs. How long has he been staying in the hospital? Be mindful of his medical records to keep track of all the treatments he has had, as well as, the payment the hospital is charging you.