Just woke up from as good of a sleep as one can hope for in a hospital, cuddling my Claire Bear all night. She came through surgery like a champ, waking up happy after anesthesia, and generally being the most chilled out kid who just had brain surgery anyone has ever seen. Her surgeons say everything went great, and judging by the pressure her cerebral spinal fluid was under, it really was time for us to do this VP shunt. She probably has been having a headache from the pressure lately and we didn’t even know it. Now, her head should stop growing so quickly and the rest of her should catch up.
We’re super grateful for the excellent care we’ve been getting, as well as all the love and support from folks like you. It looks like we will go home this evening.
I’m back from an amazing weekend in NYC helping my sweet sister Jessica shop for a wedding dress. Now it’s back to reality in a big way because Claire the Bear is having surgery tomorrow. She’s having a shunt placed to help treat her hydrocephalus (the fluid that builds up in her head because of her spina bifida), which has gotten to the point of causing fluid to build up in her spine. This is called a syrinx, and because it could compromise her mobility, we have to finally do the surgery this time, almost exactly a year after we first thought we’d be getting it done.
I’m glad we could wait this long. Since she’s older, the procedure is much less risky than it would have been on a tiny baby, and that’s always good news. We trust our surgeon completely and know she will be in the best hands. All you lovely folks: please be praying for or sending positive thoughts her way, whichever you do. Thank you for always cheering Claire on. She will be in the hospital overnight, but it should be a fairly quick recovery, so let’s hope that’s true!
After seeming to talk us into the shunt surgery in the ER, our neurosurgeon seemed to spend our clinic visit talking us out of it. While she seems to agree that the surgery is basically inevitable, there is still a slim slim chance the hydrocephalus will arrest, and since she’s not having severe symptoms at this time, we have a little time to wait. In the meantime, we’re probably going to start her on Zantac and see if that helps the vomiting.
I’m glad this means no surgery this week, though I’m pretty sure she will need the shunt at some point. Guess we’ll be staying in style when that happens, because the new infant and toddler unit at our children’s hospital will be open by then.
I also realize I haven’t updated about MY health issues in a while. Based on my slow recovery and echo-cardiograms, my cardiologist had me do a contrasted cardiac MRI. It was kind of crazy to actually feel the contrast get warm in my chest every time the MRI machine was on, and I now totally see why claustrophobic people totally wig out in those things. Personally, I pretended I was an astronaut about to be blasted into space. Anyway, the upshot is, it looks increasingly like I have a congenital heart defect called left ventricle non-compaction syndrome, which basically means the tissue in my left ventricle didn’t form correctly, which is why it’s weak and has such a “poor squeeze.” The strain and stress of the pregnancy on my body is what finally made my condition severe enough to notice. I now feel vindicated and want to go back to every PE teacher I ever had and explain that my poor performance in everything endurance related is actually the fault of my heart.
The MRI also showed that my ejection fraction (a measure of how well the heart pumps blood into the body) has improved from 15% to about 30% (normal is still 50% or better). I’m still doing well on my ever-increasing cocktail of meds, and I think my doctor will be adding a third medicine (I’m already on a beta blocker and an ace inhibitor) this week, and I hope the transition goes well.
Anyway, that’s what’s going on with Claire and me health-wise. Thank you again for all of your support, thoughts, and prayers.
Last Thursday we spent most of the day in the ER with Claire, because her already more-than-average spit up had become projectile vomiting in the last couple of weeks, and had escalated to every other feed or so in the last few days. Dr. Dad thought she might have pyloric stenosis, and additionally, since increased vomiting is a warning sign that her hydrocephalus (extra fluid in her head because of the way her spinal defect pulled down her spinal cord and blocked the exits for the cerebral-spinal fluid) is getting more severe, so we wanted her to get worked up.
She got an ultrasound of her pyloris, which ruled out pyloric stenosis, so she got an ultrasound of her head, which revealed more fluid in the ventricles of her head than the last time we looked. She also got a head CT to get an even clearer picture. Her neurosurgeon, whom we love, insisted on coming down from clinic to see “her girl” personally, and we discussed whether or not it’s time to move forward with surgery to place a shunt that would drain the excess fluid from her head into her belly where her body could then absorb and deal with it.
The bottom line is, it looks like it’s time to get the shunt surgery. We had been hoping to avoid it, but we think that since the fluid continues to increase, we’d rather go ahead and do something about it instead of waiting for things to get worse, which would involve symptoms like trouble breathing and swallowing.
We hate that our wee girl has to have surgery again, but we know she’s a trooper and will come through great. We see the neurosurgeon again on Monday morning, and it looks like the surgery will be Tuesday or Wednesday. Not sure how many days inpatient would be involved, yet. Please keep our Claire Bear in your thoughts and prayers, and us too.