surgery today

[Ziggy]

Sweet pea had a sudden decrease in his mobility a couple of weeks ago. He went from standing and nearly cruising to refusing to stand unless he was clinging to me, and I was holding most of his weight. So we saw the orthotist, and it didn't appear to be an AFO issue. PT said his unbraced ankle was collapsing under his weight, so we needed to talk to the physiatrist about a second AFO. My mama instinct was saying that it was too sudden and he didn't have a big growth spurt, so it didn't feel like he was losing mobility because of increased weight... so I made an appointment with the neurosurgeon too. He ordered a full brain and spine MRI, which we had done yesterday. As soon as he started looking at the images, you could see the problems. Chiari needed decompression, there was no space for the fluid at all. Then he had a fluid filled arachnoid cyst from C3-T3 and a syrinx from T3-T7. Poor guy! No WONDER he was losing ground and getting grumpy. I'd been blaming his grumpies on the molars he's getting. (insert guilty mama expression here)

So today he had the chiari decompression, the cyst drained, and the syrinx taken care of. I'm still sort of in shock that all of this has happened since yesterday morning. We'll be in the hospital for probably 5 days according to the neuro. Spending tonight in the PICU and hopefully moving to a regular room tomorrow.

[LillyPie]

Wow, Ziggy. Crazy couple days huh? I am glad everthing is taken care of. :)

[Ziggy]

thanks, me too. Although I forgot to mention he has a dermoid cyst in his initial myelo site, and we'll have to come back to have that removed after he's healed from this op. The doc couldn't believe how many problems he was seeing all at once. :(

[Lifeisgood]

Oh Ziggy, I am so sorry to hear that all of this is happening at once! I hope that Sweet Pea is back to his normal self soon! And good for you for trusting your Mamma's intuition! I hope you can rest easier now knowing that he is in good hands and on the road to recovery!

[cadon's mum]

Hoping that you BOTH have a quick recovery!!! Poor Sweet pea! WELL DONE YOU for going with your instincts and booking the Neuro too, he sure is lucky to have a mama like you. xxxx

[Gymp]

Wow that was fast...Your intuition was bang on...
I hope Sweet pea recovers quickly!

Gymp

[Dodger67]

Best wishes from me too - and well done for picking up the problem so quickly.

[Makennasmom]

I'm so glad that you trusted your gut and took Sweet pea to your NS. I hope that he makes a speedy recovery.

[Ziggy]

thanks guys. I LOVE our myelo team here. They have repeatedly told me that they trust a mother's intuition and work hard to get you in fast if you suspect a problem. The NS team has 3 or 4 NPs who can order CT or MRI to be done immediately (or next morning if they need sedation) even on Fridays when they don't usually see patients. I've never called with any sort of suspected problem and had to wait any longer than I was comfortable with before being seen.

He's doing better now that I can hold him. He's still hurting but at least hes not hurting alone in the crib KWIM?