And we find ourselves here…once again….we just left this place on the 1st of August!!! Here, lets just do this:
June 7- Diagnosed with acquired Hydrocephalus
June 9- VP shunt placed
July 18-27 Emergency EVD (external ventricular drain) placed to make her ‘safe’, original VP shunt moved to left side thinking that the right hand position was causing the enlarged ventricle to not communicate with the original shunt, 2 shunt revisions due to shunt malfunction
July 29- Aug. 1- Shunt malfunction and revision
Aug.4- here we are again….
So needless to say, I tried seemingly EVERYTHING to rule out her vomiting and irritability she’d been having on and off the past couple of days. Was it that she wasn’t feeling well from possibly teething? Coming down with a bug? Was her toe site becoming infected? Could it be gas? Ahhhhh!!!! Finally today, after agonizing over whether to call or not, we decided it was time- she had not been resting well and we had been trying everything to no avail. The neurosurgeon on call knew her well and said, ‘since it’s Poppy, why don’t you come on in for a scan. If something has changed, I’ll be by to talk with you, hopefully we can just rule this out and you can be on your way.’ So we headed right in.
CT scan and shunt X-ray series. We waited…
I’m trying my best to console cranky, and I look up to see the neurosurgeon. Though he’s very nice and always so thoughtfully thorough, this is never a good sign. My heart sank- my stomach immediately a ball of anxious nerves… Please no, please Lord no, he’s not down here for us….he can’t be down here for us…we just got out of this place…we were so enjoying being home all together!!!! And then….he was….reaching out to purell his hands before entering our room. Of course, I thought…. Why wouldn’t he be down here for us…this is how she rolls…this is our life. Ugh-sick to my stomach…praying Lord, You have brought us here for a reason, I know You are always with us…
He proceeded to pull up her CT scan from today and one from July 30 to compare. It showed that the latest shunt revision was doing a great job of draining most of the ventricles- this is great!! Praise God!! However, the one ventricle has grown 4-5mm since the scan on the 30th. 😦 The last few scans, the surgeons were really hoping and thinking that the enlarged ventricle had started to communicate with the shunt, but it turns out it hasn’t. The blessing in all if this is that Poppy’s neurological status has not changed, so while they opted to admit her for observation, and are prepared to act should she start to deteriorate rapidly like she did on the 18th, they feel like they have a little time to be sure the plan to deal with this problem ventricle is solid. Poppy’s case will be presented to the board of neurosurgeons tomorrow morning and her case will be discussed amongst them all. The likelihood of this ventricle needing its own shunt sometime this week is unfortunately very real. They really don’t like to use more than one shunt for treatment if at all possible, however this ventricle is proving to need its own shunt. 😦 so utterly disappointed…poor darling girl 😦 another date with the OR.
But as always, He is here with us, holding us, His children, carrying us through yet another trial. His grace is sufficient. As God guides, God provides. God provided a place for Crosby to be this week. He usually goes one day a week to a little day care/ preschool to get some socialization and a break from us. The principal had emailed Brad over the weekend to say that one of the kiddos was on vacation and that there would be room for him all week if it worked out. I’d be lying if I said this didn’t get me wondering about what this week would be like for Poppy. I actually said out loud to Brad and my parents, ‘hmmm, He’s provided a place for Crosby to go, I really wonder what that means….really praying it doesn’t mean yet another hospitalization for our girl…’ Brad agreed.
I felt tears come over me numerous times, just soaking in family time these past few days. Understanding what a precious gift it is to just sit and bask in each other and the sweet bond of what family is…everyone all together- never knowing if/when it all could change…so thankful we have been so richly blessed with this time together-it is truly precious. Thank you, Jesus.
It’s like this IS our life, and praise Him, He’s got it under control. He ALWAYS provides exactly what we need at the exact perfect time according to His will. We find rest in Him. Please Lord, help us to keep our eyes fixed on You and please, please grant healing to our precious girl.
Waiting for a bed