Update on Daughter of Purpose, January 29th

Sorry, I have not updated much. Brandy has kept most people up to date with the basics via Facebook. Here’s where we are at with our little Daughter of Purpose.

We’ve moved to the Rehabilitation Wing of the hospital on Saturday night. We always move in the middle of the night….because it’s fun….and never wakes the kids up….and is awesome….and easy since you’ve already started sleeping….

Sunday we had a fairly easy day because they don’t do any therapy on Sunday. Monday started DOP’s three hours per day Physical and Occupational Therapies. The teams that are working with her are great. She doesn’t like it at all, but she is very easy going and does what they ask for even when it hurts. It’s just in her nature to not say no. Already we see improvements to her motor skills and movements.

She can sit up in the bed (after some help of getting there) for a minute or two and can even lift her arms above her head and bring them down in a somewhat controlled fashion. The PT guys got her to stand up out of bed just to evaluate where she was at. She screamed most of the time, but she did it! There is a long way to go and our best estimate is that she’ll be here for a week, possibly two.

Standing…in a bit of pain.

Please pray for her strength and coordination and a good spirit of motivation to get out of here.

After not pooping for more than two weeks, the doctors prescribed a few different medicines to help this problem…which eventually worked…and then worked too well! So those meds have now stopped. In fact, except for one stool softener, she is OFF ALL MEDICINES whatsoever! In fact, after going to the bathroom this morning, the nurse never put her heart and oxygen monitors back on. Woot! Woot!

Also today, the surgeon pulled off all the remaining steri-strips off DOP’s neck so she could look at the original incision and stitches. It looks great! I had to count the stitches for fun….20!

20 Stitches!

MRIs and CSF

DOP had another scheduled MRI this morning to check the pressure in her ventricles again. I’ve had several people ask me about why she keeps getting MRI’s and what they’re looking for….so here’s the best explanation I can give.

There are four ventricles in the brain and they are essentially hollow areas that produce and store cerebrospinal fluid (CSF). This is the fluid that your brain and spinal cord sit in and creates somewhat of a “cushion” (among doing other things I don’t understand). The tumor was located mostly in the fourth ventricle which also allows the CSF to flow down into the spinal column. So when they removed the tumor, the hope was that part of the brain tissue would just “go back to normal” and fill in where it is supposed to be. The remaining “cavity” would be filled with CSF which is what is supposed to be there anyway.

Still with me? Good.

When the ventricles become too full of fluid, this increases pressure in the brain….that’s bad. So the reason DOP keeps going in for MRI’s is to check the pressure that is building within the ventricles. We have a picture set of what they looked like prior to surgery, but since that contained a 3″ mass of a tumor, that’s not good for a baseline. So the day after surgery, they did a full MRI to use as a baseline. During that scan, DOP still had the EVD line (Exterior Ventricular Drain) exiting her head so this allowed the surgeons to more-or-less control the amount of pressure in her head. So they used this scan as a baseline when the ventricles were at the smaller size post-surgery.

Scan of ventricles a few days after surgery.

Since they removed the EVD line, the only way to know about the pressure in her head is to watch for visible signs and use an MRI. Visible signs are nausea, headaches, eye issues like double-vision, blurred vision or blindness, and a few other things. Except for DOP having double vision, she has experienced none of this. But the doctors are not sure if her double vision is from too much pressure or simply side effects from having their hands and a bunch of sharp objects poking around inside her brain. So we look to the MRI.

If she continues to show too much pressure, then the solutions the doctors would take is to install a shunt. It would be a small tube located under the skin that would run from her head, down her neck and into her lung cavity or some other location that can absorb the extra fluid. It would be permanent…as in, she would have it forever. That would suck.

So we asked all of you to pray that the pressure would go down so she wouldn’t need the shunt.

Of the last three scans, the pressure has seemed to decrease to acceptable levels and with this last scan, the ventricles looked their best. So no shunt! Yeah! For those of you who prayed…thank you so much. For those of you who didn’t…well, you can pray for the next issue and redeem yourself.

Double Vision

Please keep DOP and her double vision in your prayers. She doesn’t seem to be bothered by it. But it bothers us! We were hoping that this problem would go away sooner, but it has stayed fast and we’re not sure it is getting any better. She watches the TV with both eyes open and she doesn’t want to wear a patch on one eye. Both the in-house doctors and the neurosurgeons test her eyes daily and know it’s an issue, but they don’t seem overly concerned. Is this because double-vision is an acceptable collateral damage as compared to….death from a tumor? Or are they not concerned because it will go away? Or are they not concerned because it can be fixed later with corrective lenses? We’re just not sure…

So please pray that DOP regains the perfect vision she had before this whole ordeal started. Our God is bigger than a tumor and bigger than double vision.

Lastly, our friends whose daughter had a heart attack two days after we came into the hospital is now sharing a room with us in the Rehab Center. They refer to her as Cloe The Brave (CTB) because she has always been so brave in this and previous heart surgeries. We’re privileged to allow the girls to see each other and do rehab together! Many of you know both families and have been “praying for the girls” together and we both appreciate that so much!

Thanks for praying and caring so much.

Nathan and Brandy