We hope we're rounding a corner, and we've definitely crossed some big hurdles today. For those who didn't see it on the news feed: Pierce's MRI looked positive. While the fourth ventricle is still enlarged (that is to be expected since the cyst has grown inside for some time), the lateral ventricles (drained by his shunt) went down from Tuesday's post-op CT. There had been some concern that his VP shunt was clogged by an air pocket or by blood from the surgery, but today's scan removed that concern and proved that it's working well!
Speaking of the scan, let me just brag on our boy for a minute. They were supposed to sedate him for the MRI, but the anesthesiologist couldn't fit him in. So, we tried it without sedation. No one expected he'd sit still long enough to get a clear picture, but wouldn't you know he went in wide awake and followed our instructions to lay still until the very end. I'm sure he was in a great deal of pain as he had been moved around a lot and had to lay on the hard board for the MRI. I was so proud of him. His neurosurgeon called to see how they fit him in with the anesthesiologist and was shocked when they said he was awake the whole time! It was such an answer to prayer.
|Being brave and all smiles after the MRI|
Our biggest goal at this point is to help him move past the nausea and vomiting. I can't even begin to imagine how hard it must be to vomit when your neck muscles have been cut (he has a 6 in incision starting at the base of his skull and going all the way down his neck) and a large portion of the back of your skull has been removed/replaced. Ouch! But in true hero fashion, our boy is taking it in strides. While he's in a great deal of pain, he doesn't seem to cry much. Occasionally I catch a whimper, but he's cried very little throughout this whole process. And after he's done and able to lay down, he starts cracking smiles and chattering away.
I can't even begin to describe how exhausting and difficult the past few days have been. It's been such a reminder of those early days where we thought we were going to lose Pierce (hello PTSD!). You feel like you're on auto-pilot. But there is such a peace that abides in times like these. Such a supernatural peace.
Yesterday we watched as a family said goodbye to their 9-year old son who was hit by a car on Sunday. It was excruciating to witness the family coming in and out of his room and to hear the cries from them.
This world is so broken. So, so broken. And so this week, I've found myself basking in the joy that we have hope beyond this fallen world. Hope in a Risen Savior who loves us. Who is coming to rescue those who love Him from this pain and sorrow.
And as I watch Pierce struggle through such intense pain... I am reminded of the character that is being built in both he and I (and Nik, too). I LONG for the day when Pierce will no longer suffer anymore. And while I know that pretty soon he'll be back to his healthy self, I also know that as long as he's alive, he'll always have some form of suffering. We all do. Every day. May we always rest in the grace of Jesus which will sustain us until He comes to remove all our suffering. And may we suffer well, trusting in our loving Father who never leaves or forsakes us.
Here's how you can be praying for us during this time:
1. For the nausea to subside and for Pierce to begin eating normally again. He wants to eat, but knows it will make him sick so he is hesitant to. Please pray he's able to keep food down soon.
2. For the pain to subside. Pray that the lower powered pain meds are able to control his pain.
3. For protection against infection during this recovery period. The risk of infection is higher during the first 10 days, so please pray that during this time, Pierce will not develop an infection.
4. Pray that his brain would heal, that his cerebellum (which was severely squished by the cyst) will begin to fill in where the cyst once was, and for his brain stem to return to a more normal position. You can also be praying that Pierce's body would naturally absorb all of the extra fluid that was released from the cyst. They neuro team will be scanning him frequently and it will be a few months before we know for sure that the surgery was a success. Please pray that it was!
5. For wisdom on when to return back to Charlotte. At this point, we're unsure of when we'll be discharged, but we're also a little unsure of how soon we should return home.