We've spent the last two months, one ER trip to KC Children's ER, and various labs tracking down a consistent high fever. We've test for everything under the sun and concluded at one point that it was something viral plus teething. Another time it was an ear infection that also included MRSA.
But through it all, we've seen no distinct changes in her fontanel pressure, other than it's slightly less full when she's off her vent than when she's on it. We continue to watch closely for any signs of seizures, however her seizure activity ceased completely last fall after she started her first seizure med. We're grateful that in regards to possible pressures in her head that she's been stable all this time.
That brings us to last week. She had a crazy little episode while getting her up the morning of her first day of appointments where she dropped her heart rate rather quickly and back up again, and somehow woke with a 100.8 fever. Our concern became more real as we closely watched for any signs of sickness, or the MRI would need to be cancelled. At her regular Home Vent appointment, her doctor explained to us that continued cranial pressure over time can cause a quick heart rate drop and make it difficult to regulate body temperature, and thus even though they might appear like illness coming on, it was more important to gather the information needed by going through with the MRI.
Chloe did great with her MRI and recovery this time from anesthesia. We came home over the weekend and are waiting for results from the MRI. The only glitch was that her heart echo was showing a slightly weaker squeeze when done under anesthesia to get better pictures, than in clinic two days before. We pray that it was only due to the anesthesia and nothing else of concern.
What we're waiting to learn: The reason for the MRI was to determine why her fontanel is still full. Why her eyes show edema (swelling) on her optic nerves and still twitch at times when she's trying to focus. If there's fluid on her brain and whether that means a shunt to drain that fluid and relieve pressure. Or, if not fluid, reasons why these symptoms are still here a year out from when they were first noticed. Is the pressure in her head due to the changing pressures from her Glenn heart surgery last year, and if so, will it continue to go down the more we wean off her vent? And thus, is it a less invasive waiting game to get off the vent than an invasive shunt?
We have discussed this at length with her team of doctors and with her Palliative care doctors. We're all on board that she needed the MRI, and we're on board with a possible shunt if that is needed, if even for comfort care. The Palliative care team assured us that many families choose that for comfort measures. I can't imagine having a headache or migraine every single day due to pressures, if that's what she's experiencing but cannot communicate to us.
That brings us to this week of waiting on results and planning out future neurology appointments.
And the weirdest part is simply that we do not know how to pray through this.
We know we need to pray, that we're called to pray, that God hears our prayers. But we also know that prayer is not a list of our wishes prayed over and over in an attempt to make them come true. Too often people tend to pray for the things they want-good health, wealth, no suffering, that dream house, that car to get fixed, the paycheck to stretch, fill-in-the-need. We usually approach the Mercy Seat with our mind already fixed on what the answer is.
But what if we don't know? We truly do not know what the best outcome of results would be in our current situation. We don't know if we should be praying for a shunt, or praying for no fluid so she can wean from her vent. Both have negative consequences and poor outcomes on one hand, or good results and outcomes on the other.
We usually know how to pray for her needs. We ask the Lord to intervene on the level of knowledge that we as humans have, and then wait expectantly for Him to come through. This season of waiting for the MRI has taught us, above all else, to just pray. To pray the Lord's Prayer as taught in the Sermon on the Mount (Matthew 6:5-15//Prayer 6:9-13). Not filled with every example of outcome and result, but simply from a heart that trusts that He is good, He is for us, and He will go ahead of us in this to help our daughter.
We ask that you would pray that for us and for Chloe as well. Because His will covers the skill of the doctors and the anxiety of our hearts. Because He provides our daily bread as each need we do not even know of is met. Because He forgives us just as we have learned to forgive others. Every need and want and worry is met in that simple prayer.
"Now to Him Who is able to do far more abundantly than all that we ask or think, to Him be glory in the Church and in Christ Jesus throughout all generations, forever and ever. Amen."
Ephesians 3:20-21
Thanks for the update. And yes, I will be praying.
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