Friday, December 16, 2011

The Cheer has Left the Building

We have had a couple of really rocky days here.

Last Thursday was Kingsley's MRI. The morning began as usual until I got a call from my mom telling me that my aunt had passed away in the night. She had had health problems, but this was unexpected nonetheless. It was a heart attack that was the conclusion to a number of very hard years for her. I am so sad to lose the wonderful woman that she was. I know that she's at peace now, but I'm just so sad.

Kingsley's appointment was supposed to be at noon. The poor guy had not eaten since 6:30 the night before and was doing so incredibly good about it when we checked in at 11:30. We were told that they were behind by about 30 minutes. Thirty turned into 60, then 90, then 2 hours. He finally went in just after 2:30. It took him longer to fall asleep this time, which was horrible. I just held him while they held the mask on his face and he cried and cried. I hate that part so  much, but I cannot imagine him going through it without me there.

I have heard mom's say before that they feel badly complaining about how scared they were when their kids went in for tonsil removals or other routine procedures, because compared to brain surgery they are not that serious. I'm telling you though, it doesn't matter what the procedure. Kingsley was put under a general anesthetic, he had an IV and was intubated for his MRI. That's all and I was about as terrified for this as I was for his two brain surgeries. Trusting people to do things to your child is a very scary thing. With my heart in my throat, I waited the long hour and a half until he came out.

They rolled him out and I could just not believe how big and brave he looked, lying there on the bed with his head on a pillow like a big kid. They said he didn't cry or even whimper in recovery. So proud of that guy. We took him home and he was back to himself within the hour.

I had begged them to send us an email as soon as they saw the scans, no matter the results. I needed to know if I could relax or if I should cancel Christmas and start arranging childcare. I did get an email the next day and the answer was somewhere in between. The syrinx is still there, that nasty devil. I did not know that it was possible to hate a part of my son so deeply, but I hate that syrinx with all my being. I want it gone from our lives or at least made insignificant. Instead, it haunts us. It may or may not be causing these problems. It may or may not require more surgery. It's not urgent, but it's not good.

We have our follow up appointment first thing tomorrow morning and then King's neurosurgeon will assess him and let us know her thoughts about surgery in the new year.


  1. I'm so sorry to hear of the loss of your aunt. You and your family are in our thoughts.

    I hope everything goes well at the neurosurge appointment and that it is something that can wait and continue to be monitored. Kingsley's syrinx sounds a lot like E's cyst (we have our MRI next month).

  2. I just wrote a message and internet messed up and deleted it argh!

    I just wanted to say I'm thinking of you both and we're in the same situation so I know how you feel. Two syrinx's for Caitlin but unfortunately no MRI. (Joys of the NHS!) I'm sorry you didn't get great results but syrinx's can stay there and do no harm. We've known about Caitlin's syrinx's for a year now and nothing has come of it. I hope you get answers with the neuro and I hope your bearing up okay. Losing a family member is horrible, and what an awful time to lose her. Lots of hugs to you from me & C xx

  3. I'm so sorry for your loss. :( We will keep your family in our prayers. And of course I hate that you have this continued anxiety over King and "he-who-must-not-be-named" (aka - the syrinx). We've not had a baseline MRI yet. I know - crazy. So I'm blissfully ignorant and yet sick-to-my-stomach over what they might find when we do. But I'm just trying to take it one day at a time - like you do sweet friend. :) I'm thankful the surgery is not urgent and you can have a holiday at home! But I know this is like a cloud looming over your head now. Try and savor those bits of happy as much as possible! I know there will be moments of frustration, worry, and anger - and you're allowed to feel those and take a moment for yourself to cope with them however you wish - then put them back in that SB box and open up your box of Christmas happies again! I'm thinking of you all and praying for a happy, healthy christmas and positive new year! Blessings and peace to you all. xoxo

  4. All man Jill I am so sorry! I totally agree about what you said about general anesthetic no matter what it is, its scary to put your child's life in someone elses hands. I really hope nothing serious is required for your precious little man. Poor little dude he is so tough. Seems silly but big hugs from us and his buddy Emma.


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