Thursday, June 3: Update 2

We got the MRI results and the only word I have to describe it is ‘ambiguous.’ I don’t know why this is affecting me so acutely, but this news in particular is hitting me hard. It may have been that I was hoping for too much.

The MRI revealed that there is damage to the Basal Ganglia in her brain. This area of the brain is a deep portion of the brain and disorders in this area can lead manifestations like Cerebral Palsy. The neurologist used ‘mild’ to describe the damage but it is a nuanced use of the word: while the current MRI looks mild, there is potential that the damage could still be devastating. This is where the ambiguity comes in. We were told on the first night that the extent of damage on functions could be between 0 and 100%; that appraisal remains the same.

While the doctor and neurologist who conferred on the scan have been practicing for decades, they could only describe what they were seeing as different: this is a new case to a neurologist that has seen much in 25+ years. This ‘different-ness’ doesn’t leave things open to interpretation: there’s just nothing to interpret. The MRI results are a data point that gave just confirmed that our uncertainty was warranted. Things are still very uncertain.

So where does that leave us? The only person that can answer that question is Claire. The damage to her brain is done. Nobody knows to what extent. So we are now getting ready for an exercise in ‘Show us what you can do.’ While we were wrapping up our MRI results meeting, the doctor turned off the remaining sedatives. We’ve started the process of removing whatever roadblocks she would have to directing her own recovery. No more sedation meds. No more paralytics. And as soon as she’s able, no more assisted breathing.

We’re going to be looking for progress. We don’t know how deep the injury goes so we will be anxiously waiting, praying and hoping to be shocked. Because that’s what it’s going to take.

Tiffany, Autumn, Heidi and I are missing our daughter. My heart is hurting for her and I am frustrated that I can’t fight for her. As a father I have always been aware of what I can protect her from and I have endeavored to keep those things at bay: it’s so difficult that I can’t see those things that are standing in front of her right now. It’s harder that I don’t know which obstacles she’ll be able to lift on her own and which will be permanent. I want to move those mountains for her. I can’t.

I am sorry we don’t have more news to report. The next seven days will tell us much. And as a skeptic, I’m asking for a miracle.

Thursday, June 3: Update 1

I finished talking to the doctor and we have our marching orders for the day. As I mentioned in the previous update, the doctors are encouraged by Claire’s progress. We still don’t know the extent of her injuries, but we’re headed in the right direction.

We have an MRI scheduled for 12:30 PM CDT today which will give us more data to analyze. Claire will be further sedated to make sure she stays still for up to an hour while in the machine. We’ve been told to expect the test results within an hour after completing the MRI. I’ll post the results as soon as we get them.

The doctor also told us that he’d like to have Claire off the ventilator completely by the close of the day today. We’ll continue to watch her progress and adjust that plan as necessary.

The doctor’s words about her eyes when he did the test this morning were, “They are responding briskly.”

These varying sizes and degrees of steps have all be positive. The doctors continue to caution that we have a long journey ahead and we still have some looming questions. We hope to have some more clarity by the end of today.

As always, thank you for your prayers and support.

Wednesday, June 2: Update 4

The last hour has been eventful beginning with the doctor’s progress report. We began backing down the muscle relaxant around 4:00 PM CDT and the sedatives around 7:00 PM CDT. The muscle relaxant exited Claire’s system in short order and we discovered how quickly when her feet started twitching. The doctor confirmed that the movement we were seeing in her body was her controlling the movement. Muscle control is just level in a hierarchy of neurological functions, and items like her pupils dilating, eyes twitching and muscle movement demonstrate that the injury to her brain most likely doesn’t extend to her brain stem. The extent of the injury is still in question and the doctor indicated that he’d like to see some big steps toward some higher neurological functions over the next 24-36 hours.

The big step took place during the next 30 minutes when the vital monitor alarm interrupted our progress report. Claire was showing agitation and expressing it with eyes open and tears. While Tiffany comforted her bedside with her voice and holding her hand, I watched with the doctor who broke the silence with “This is a big step.”

The big step led to a couple of changes. The doctor asked the respiratory therapist to reset the ventilator so that Claire would now be directing the breathing. While the machine will continue to give pressure support and eight breaths per minute, Claire will direct the rate of breathing for the 32-40 breaths she is taking each minute. Because she is agitated, we are also adding a non-narcotic sedative to help the transition.

While Tiffany continued to comfort Claire, the doctor and I discussed the significance of Claire’s crying. Crying is another level in the functional hierarchy and helps us further narrow the extent of the injury. He restated that he said he would be looking for big steps over the next day and this is one of them.

This has been quite the capstone to a big day. Nurses and doctors were very encouraged today and didn’t hesitate to share that perspective with us.

We’ll next start looking at scheduling a time for an MRI tomorrow or Friday.

With today’s close I want to thank everyone for their support and prayers. My sister Emily is also flying back to Colorado tomorrow morning at 9:00 AM CDT. I’ve loved having her here and her presence has meant a lot to me. Please pray for her safe travel.

We wanted to make sure and get a picture of Emily with Claire before she left. I look forward to showing it to Claire soon.

Also, in the first picture, the restraints around Claire’s wrists are there to keep her from pulling out the tubes and cords on her body as the sedative is drawn down.

It’s been a long, but positive day. I’ll post the nights events in the next update tomorrow.