Saturday, June 5: Update 1

Today has been emotionally challenging. My mind has been regressing to the things we did with Claire before last Sunday. Needless to say the emotion expended today has been tiring.

The catalyst was this morning’s visit with Claire. She was having a tough morning as the sedative was wearing off. We’ve been warned about some of the things that denote neurological destruction, and Claire was showing some of them. When the brain is injured, there can be miscommunication between it and some motor functions. This manifests itself as ‘posturing’: her limbs will tense and turn in toward her body. When she is agitated, she exhibits some posturing. While she was having her lungs suctioned this morning, she started posturing. But as the late Billy Mays would say “That’s not all.” During the suction Claire reached her left hand up to her throat for the tube. The nurse jokingly said, “I’m going to have to put those restraints back on.” It was encouraging.

I also spoke to the doctor and asked about the posturing. In short the verdict is still out because posturing could just be symptomatic of her functions coming back on, not necessarily an indication of how things will always be. We’ll wait and see.

This time was punctuated with some acute memories and many tears. It felt good to cry.

The tears continued at my next visit. She made eye contact with me. Her eyes weren’t listless as I has seen them before. Her heart rate was at 160 bpm, and I was talking to her. As I looked into her eyes and smiled, her pupils closed down and fixated on my eyes. Her breathing was very high, and as I spoke to her, both her heartrate and breathing started to moderate. As I stroked her forehead, her eyelids slowly dropped, and she went back to sleep.

I held my emotions at bay until we left the PICU where I expressed my relief with more tears. It wasn’t much. It was enough for today.

Friday, June 4: Update 2

While this is titled an ‘update’, there isn’t much new information to share. We met with the doctor this morning, one of the six we haven’t met before. Rather than discuss new information we focused on agenda setting for the next few days. Claire has had a challenging two days between medication changes, the MRI and intubation discomfort: the doctors want to slow things down so it’s not so hectic. So we are. The doctors re-upped her sedative slightly and are slowly dialing back on the ventilator. She’s at 14 assisted breaths per minute right now and 40% oxygen. Once Claire is around five assisted breaths per minutes, we’ll begin making plans to remove the tube and get off the ventilator. That will give us the opportunity to start weaning the meds without the intubation (against which Claire has an apparent vendetta).

The only big news that took place involves Tiffany and me. We were encouraged to get out of the hospital for the first time since Sunday. It took some cajoling and bargaining, but we ended up leaving for a while. Both Tiffany and I have been feeling bereft of emotion of late, our bodies, minds and eyes wracked by the events and accompanying tears. It was nice to zone out for a while and we’re finding that while we’re away from Claire, we prefer to let our minds go blank. There are just too many rabbit holes we prefer not to jump down right now.

We went to a store to get some socks for Autumn and I mentioned that I had a weird feeling with all these people around that are oblivious to what is going on. Tiffany felt the same way.

Our final stop was at Freebird’s World Burrito in Addison. We had no plans to weep in the middle of Freebird’s. But we did. And it’s all because of the kindness of strangers who had no idea about the last week. I’ve mentioned that we feel bereft of emotion about what has happened. Instead we’re finding ourselves emotionally volatile about the strangest things. Steve took our order at Freebird’s and the care, attention and kindness he showed us made us cry. It was simple things like handing us two glasses after we’d ordered to get something to drink and it was “on him.” I spoke with the manager, Brian, and told him that Steve doesn’t know what we are going through and his kindness meant a lot. While we waited for our order, Brian walked over and laid a handful of gift certificates on the table. He told us it wasn’t much and he hoped things would start getting better. I don’t like to make people uncomfortable and I’m sure we did as both Tiffany and I thanked him through tears.

We share this because the comments on these posts are from strangers, friends and family alike make us feel the same way. We’ve are reduced to tears each time we read the comments and its your kindness that overwhelms us. We can’t thank each of you by name right now, and please know that we are indebted to you for your largess.

We hope to have positive news to share soon. Our hopes are growing and we are drawing strength from those around us. Thank you for your continued prayer, thoughts and support.

Friday, June 4: Update 1

Last night Tiffany and I sat together and read the comments to the last update. The stories and encouragement helped us at the end of a very hard day.

I haven’t had a chance to meet with the doctor yet this morning. Last night was uneventful. Claire was tired from the days events and slept accordingly. Her drug intake is lower, however, it is an ever changing cocktail of medicine as doctors seek to balance keeping her as comfortable as possible and making her discomforted enough to wake up. There’s no formula for her body, so doctors are frequently changing her dosages and adding or subtracting meds.

Tiffany felt encouraged this morning after her time with Claire. The night time nurse and Tiffany both see signs that Claire may be responding to Tiffany’s voice. Claire’s agitation is apparent and frequent now as she tries to wake herself up. While it’s hard to watch, Tiffany said that when she talks Claire’s vitals seem to moderate and her eyes seem to attempt focus on Tiffany’s face. It’s not conclusive, but it is enough to bolster our spirits this morning.

Claire is still on the ventilator.  We don’t have a time line for getting her off the ventilator. It has to be operating at some key support levels before the doctors will discontinue use. We decreased support a little last night and will continue to decrease support throughout the day. It will be nice to get the tube out of her throat because it seems to be a major source of her discomfort.

So the waiting continues. This has been the longest break between updates and for those of you who are visiting the site often, I apologize for the delay. Thank you for continuing your prayers. I will post again after I meet with the doctor this morning.

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.

Wednesday, June 2: Update 3 with Pictures

I just got done sitting with Claire again. She is off the percussion ventilator and now on a less noisy, less intrusive machine. This is important because it is one of the steps toward slowly weaning her off the medicine that is keeping her muscles paralyzed. It’s also an indication that her body is doing a better job of getting oxygen than it was previously: she’s becoming a little more stable hour by hour.

I’m not yet comfortable taking my big cameras into the room yet, but at least I had my iPhone. I know many of you are eager to see her.

Here she is having just moved from the percussion ventilator to the new ventilator (in foreground). You can’t see it well, but the screen shows great oxygen activity.

Autumn and Heidi met with two hospital workers this morning that specialize in child development and help siblings deal with the events. These are the pictures that Heidi and Autumn made for Claire during the morning session. They’re hanging in Claire’s room now.

And here’s our brave baby Claire. She’s beautiful.

I’ll post again tonight after the progress report with the doctor.

Wednesday, June 2: Update 2

My dad Tim just flew in from Colorado and I took him in to see Claire. While we were there we were able to meet with the doctor and get a brief update on Claire’s progress.

The infectious disease specialist had told us this morning that there were some abnormalities in her blood work; the doctor this afternoon indicated that it was nothing new and they are treating the infection a little more aggressively.

The doctors will be backing down the pressure on her ventilator a little more in the next couple hours and hope to transfer her to a more passive machine sometime in the next six to eight hours. Our goal is to raise her body temperature to around 36 degrees Centigrade by this evening and keep on track for normal temperature tomorrow morning. It’s an inexact science, but the doctors are practicing this inexact science well.

I will give another update this evening after the shift change and the night doctor comes on board.

Wednesday, June 2: Update 1

One thing I neglected to mention last night is some of the support that we have here in Dallas. I can’t name everyone but want people to know that my in-laws Ed & Sarah flew in Monday afternoon, my mom Susie and my sister Emily flew in Monday morning and my Dad is flying in today.  We have had a number of offers for help with Autumn and Heidi and as this progresses we will be coordinating that help to give them a break.

Now the updates:

Last night my mom and I were bedside with Claire and got to see a pupil test. The on-duty nurse Andrew showed us that she is having noticeable response to light on her eyes. With each update like this I want to caution that it is not a definitive indicator of the outcome, but it is a sign that we’re headed in the right direction. More importantly it strengthens our hope and resolve.

They also started a nutrition plan yesterday for Claire to give her body the energy it’s going to need for the fight ahead. A monitor to track micro changes in her blood levels was also connected to her which is tracking organ activity and oxygen use in the brain. The monitors are showing positive trends right now.

An infection specialist was ordered by yesterday’s on-call doctor to monitor the signs of infection they’d seen yesterday. Claire’s white blood cell count was a little high yesterday indicating a possible infection. We changed to two other antibiotics to fight the infection. The infection specialist told us that they were strengthening her antibiotics and we should expect the results of her cultures later today.

The work to prepare us and set our expectations has also started. We were cautioned last night to expect that Claire will go through some withdrawals as some of the medications are stopped. The doctors will introduce a couple of other medications to deal with the withdrawal symptoms. We were also told to expect that some straps will be added to her wrist to keep her from reaching up and pulling out tubes as she comes out of sedation. While the idea of our girl strapped to the bed is stark, we’re reminding ourselves that if she has to be strapped down it’s because she’s moving and responding: we want her to move and respond.

One note about Claire’s night nurse Andrew: we came down to Claire and found her hair brushed and in a purple bow. Andrew has been taking great care of her and he has our gratitude. We will be mentioning some of her other bedside care providers later as well who has been just as awesome as Andrew.

As we get the culture results back we’ll continue to update.