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.

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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.

May 30th 2010: Start Here

I’m going to write this from my perspective because I don’t know how else to relay the events of the last 48 hours. Some of you have heard the story and many of you have just heard bits and pieces. Either way here is the story about Claire (Autumn is helping me write this and wrote this nice transition sentence).

I’ll start with where we are now: Claire is at Medical City Children’s Hospital in Dallas, Texas after a near drowning event on Sunday. We have a lot of questions about all that took place and here’s what we do know about that first hour:

  • Claire didn’t have a pulse for 30 minutes;
  • When the practitioners did get her heart going again, she could not breathe on her own; and
  • Claire’s little body was fighting to stay alive.

    Doctors quickly determined that Claire needed to have more advanced care and she was transferred from Las Colinas to Medical City. The admitting doctor at Medical City spent a couple of hours stabilizing Claire which involved an additional complication when an air pocket materialized around her left lung. The exceptional care providers at Medical City were able to extract the air from around her lung and avert additional danger. Tiffany, Autumn, Heidi and I were waiting in an adjoining conference room and had the comfort of a medical assistant and our close friends Jon and Becky while the doctors took care of our daughter.

    The knock that announced the doctors also brought the plan for the next two days. To reduce secondary damage from organ and brain inflammation and to decrease toxic blood circulation, the doctors would lower her temperature to around 93 degrees Fahrenheit for 48 hours. These 48 hours also denoted a waiting time to see what the extent of her injuries were from the blood toxicity and oxygen deprivation.

    Claire had also aspirated some stomach acid and the doctors were concerned that the fluid could lead to a bad case of pneumonia. To extract this fluid, Claire has been attached to a percussion ventilator since she was admitted to PICU: a nurse described that this was like turning a baby on her stomach and striking between the shoulder blades to expel the fluid. It worked. On Monday night we received the first bit of positive news that Claire’s X-ray showed no signs of lung fluid. The doctor was confident enough to lower the pressure support on her ventilator: Claire’s body is equipped right now to breathe on its own with minimal assistance.

    There are many more details in between but it’s best if I tell where we are right now. We were scheduled to start bringing Claire’s body temperature up to normal levels today at 5:00 PM CDT. Claire didn’t want to wait that long. About three hours before five her body started self-regulating and began raising its own temperature. The doctor expressed that he isn’t concerned, but they’d like to slow down the warming up process. Her temperature is now back down and we’ll slowly bring it back up to normal.

    How I want this blog to work is that if you have questions, please feel free to post them in the comments. I will be checking, updating and responding as time is available (it gives me something to do to keep my mind active). I will be posting updates as they are available.

    Thank you for all your prayer, thoughts and support. It has been overwhelming.

    Love,

    Tyler, Tiffany, Autumn, Heidi & Claire