Month: June 2010

Claire’s therapists had some aggressive plans for her today. Claire, however, wasn’t consulted beforehand. She was a little less compliant than she was yesterday. The therapists did put her through some more challenging exercises still. Claire had to put her weight on her hands and support her upper body and then rest her elbows on her knees putting weight on her legs and feet. She showed resolve by trying to raise her head again today despite her overall energy lack.

The therapists also suggested that we consider some therapy in the water. This sent chills down my spine when Tiffany told me about it. Once the initial reaction passed, Tiffany explained the rationale: Claire has been calming during her showers and the pool therapy would help with her toning. We hope she can try it out soon.

Claire continues to improve her sleep cycle. She slept for six hours straight last night. That is the longest stretch she has had of continuous sleep. Sleep is one of the critical recovery factors. It is an indication of the brain calming down and we hope cognitive therapy will soon follow.

Tiffany and I are home with the girls tonight. We played Clue with the girls. Autumn won. The girls got in bed before 10:00 PM for the first time since the accident. It’s going to take a while to readjust their sleep schedule. They were in bed at 8:30 but they’re still awake and I anticipate they’ll be up for a while longer.

Our emotional state was less volatile today. The longer the good day streak continues, however, the more I find myself bracing for the next bad day. It’s hard to just rest and recharge. Since we don’t know how, we’re going to force ourselves to go to sleep earlier than we have been. We hope we can replenish our sleep reserves some.

So with that, thank you for your hopes and support and goodnight!

We are saying goodbye to some family today. But it is a farewell that caps off a great day for Claire.

Claire and I began the day with an hour and a half of exercises. She was a little champion. I put her through all kinds of stretches and resistance exercises to wake up her muscles and protect her range of motion. She protested. I talked her through it. It was a good start to the day.

We took our third walk outside and extended our record from 15 minutes to 30. It was a cooler Dallas summer day, slightly overcast and humid. The sun hid behind the clouds for the duration of our walk. Claire enjoyed the excursion.

Our time outside ended when the rest of the family arrived. Physical and occupational therapy was next on the docket. We were surprised to discover that today would be Claire’s first day to try the standing board. This was a big step for two reasons. First, Claire had always been relegated to therapy bays that sequestered her away from the noise and commotion in the general therapy area. The standing board is in the general area. So we were curious to see how she would handle all the other stimulating activity going on around her. Secondly, this was a more aggressive treatment and we were curious to see how agitated Claire would get. She handled it very well. She wasn’t any more agitated than normal despite all her protests to mommy at first.

Claire stayed in the standing board for the full 30 minute session. The occupational therapist commented that Claire’s range and motion has improved a lot since yesterday and she feels much more loose. The therapist also tested Claire’s eye tracking. She used a flashing light toy and moved it laterally in front of Claire. Claire tracked both directions with a stronger response to her right side. It was great to watch. We are very pleased with the rate that the therapists are moving her sessions. Each session is new, different and more challenging.

The busy day took a lot out of Claire. But she did a great job. I was very proud of her.

We were reticent to see my sister, my dad and Brian leave tonight. The visit was too short. It was nice being close together, yet we longed for the times when we just hang out. We eagerly anticipate the day when we can all be together again on different terms. They are all driving back to Colorado tonight. Please keep them in your prayers.

My paranoia has increased a bit over the last four weeks. When I stay at OCH with Claire, I have to get up from bed to check if she’s breathing. I used to do the same thing when she was newborn. I’d make sure nothing could block her air supply. I’d check to see if she was covered up and warm. I’d check her diaper. I was always careful not to get too close or fuss with her too much, fearful of waking our sleeping baby. So I’d leave the lights out and dip my head close to hers so I could hear her soft breaths. So I’ve done this before. But it’s not the same.

I had no reason to think that Claire’s mechanical structure wasn’t operating properly when she was a baby. I was mindful of the external threats to newborns and guarded accordingly. She had her regular check ups and was always given a clean bill of health. My frame of reference changed four weeks ago. Now I am firmly aware that her once healthy body has been compromised. I am thankful that she is stable, and I am more paranoid about slight changes. While at Medical City, I would watch her oxygen saturation and heart monitor late into the night, convincing myself that  if it stayed constant for an extended period of time I’d be able to go to sleep without worry. I do it now with her breathing.

My paranoia does not stop with Claire. I was collecting our mail last week which is adjacent to the community pool where this began. I heard kids playing but the noises were ambiguous to my mind: were the sounds safe or distressed? I had to see them to put my mind at ease. Therein lies my struggle. My mind needs to be convinced through sight that everything is safe; however, my mind is tricking me into thinking that because everything is safe now, when I see it, it will continue to be safe for the foreseeable future. I’m tricking myself so I can sleep at night.

This is an aspect of what has been so world shattering to me and Tiffany. We loved our lives. We’d only had brushes with suffering until four weeks ago. We’d never met it head on. So we lived our lives as if the present, what we could see then, would continue forever. We’d never had to face our own mortality. We couldn’t fathom the far worse scenario of our kids’ mortality. So not only do we find ourselves grieving for Claire not being with us right now, we also miss the semi-charmed life we had. We don’t know how to live this one. We don’t know how to suffer. And until I figure it out, I’ll continue to recapture those little pieces of control to get me through the next few hours by checking on Claire while she sleeps.

Thank goodness she’s sleeping now. It took a while and my arm is tired from patting her back, but she’s sleeping soundly. I can hear her breathing – which keeps me from getting up to check – and she’s been going strong for almost an hour. We’ve got the beginnings of a system to make it through the nights and we hope it diminishes volatility through the nights. It will help her stay strong for her therapy sessions.

She needs her strength for the sessions. She did well today. The occupational therapist was very pleased with Claire’s progress and range of motion today. Claire also got to try laying on her belly today. A wedge aided her and the therapist was testing her neck strength. She gently told Claire to lift her head. Both Tiffany and I were excited when her neck muscles tensed and her head raised slightly.

The physical therapist exercised her neck more. Claire was challenged to hold her head upright while being held vertically. She did. The therapist then tilted Claire to her left so her center of gravity was off. He asked Claire to hold her head up again. She did. He tilted Claire to her left and told her to hold her head. She did. At center again, Claire dropped her chin to her chest for a rest from the energy expenditure. The therapist told her to lift her head up. She did. We’d been seeing more muscle control with her head in bits and pieces. This was the most glaring example. We enjoyed watching and encouraging Claire.

We found that Claire also responds to different message packages. When you nicely ask Claire to do something in a sweet voice, she tends to ignore it. If you use a standard voice and make it a command instead of a request, she tends to make an effort. It also helps to have a male voice: she’s responding to requests that originate from male doctors (and dad) more than female. Read into it what you will.

Claire had a number of visitors today. Papa, Nana, Autumn, Heidi, Bryanna and Brian all joined Tiffany and I at OCH. The girls were excited to see Claire again after a few days of missing her. Heidi talked to Claire first and reassured her that Claire would get better. Autumn soothed Claire by rubbing her arms and back. Claire responds very well to both of them. It helps us to see them all together.

Claire also got a visit from another near-drowning mother, Jeanne Damoff. When we first arrived at OCH, one of the nurses encouraged us and told us about a book we could read that is available in the OCH library. She couldn’t recall the title but would get back to us. She came back a couple of days later and my mom was reading the book “Parting the Waters.” The nurse saw it and commented, “I’m glad you found it!” We hadn’t found it. Jeanne had sent it to us. It’s her family’s story.

Jeanne shared pieces of her story with us today. She was generous with her time (thank you Luke and Sarah for sharing her with us) and her encouragement. She was our gift today. We hope to see her soon and meet the rest of her family.

Thank you as always for the prayer, support and hopes.

There’s not much to update in the recovery realm. My dad got in this morning for a short visit and was soon reunited with my mom and Claire. They spent the morning and afternoon taking care of her while we played with Autumn and Heidi. Claire got to take another walk outside and hasn’t spent much time in her bed. We like keeping her out with us during the day.

My sister-in-law Michelle left yesterday morning after a week. She helped watch the girls and kept their minds busy. We are glad she was able to see Claire and help take care of her during this transition period. She bought Claire a sock monkey that Claire holds between her arms now (we do unfortunately have to put the business end of the monkey in Claire’s face – she won’t remember though). We miss her already.

Claire has followed the same sleep pattern two nights in a row now. We hope the trend continues. She’s getting the rest she needs and so are we. It’s giving us all the energy to work harder during the day. She still isn’t following simple commands and that is the required response to begin working on speech and other cognitive therapies. I am conflicted about the balancing act we are trying to strike with the medications: we want her comfortable, but I’m concerned the drugs may be clouding her ability to follow simple commands. I will be bringing this up with the doctors this week and asking if there is a way for us to be more aggressive during the day to get her off the sedation medications so we can gauge how well she can focus when not under the influence.

We continue to hope for Claire’s recovery and encourage her to work hard. Thank you for sticking with Claire’s story. We know it is going to be a long road, and we are thankful for your joining us on it.

Tiffany and I are handling some of the emotional aspects in different ways. We’re supporting each other through our various coping mechanisms and it’s stretching us in ways we hadn’t foreseen. We are both missing Claire: we are shocked that it has been nearly a month and heartbroken that it has been that long since we saw Claire smile and heard her voice. Tiffany has been looking at pictures of Claire and listening to her voice on our digital recorder as comfort. It makes her feel close to Claire again especially on nights like tonight when we’re both away.

I can’t look at the pictures or listen to recordings of her. I was despairing a couple nights ago while I was staying with Claire because I was having a hard time remembering her voice. I was reliving a week prior when she had dressed in her princess dress and asked me to be her prince. She told me to stand at one side of the room and to say “Do you take this woman to be your princess?” What broke me was that I couldn’t hear my princess’s voice in my mind. I could only hear her as she is now. My heart hurt.

Tiffany encouraged me to listen to the digital recording. My reservation goes deeper than just the suffering from missing her. I want to hear her voice not as it was but from her mouth. I am working against the tendency to think about what was and focus on what will be. I don’t want to betray my hope that Claire will again have the same voice and personality. But this is not Tiffany’s path.

So I joined Tiffany on her path tonight. Tiffany needed to see Claire and grabbed Claire’s album. I stood beside her and cried with her while we looked through her most recent birthday pictures. We hurt together, some of the pain the same, some different, and we remembered Claire as she was prior to that day.

While we have some differences, we have the same goals and desires. Tiffany and I may not understand each other sometimes, but we do support and respect each other’s needs and mechanisms to meet those needs. While it was hard for me to look at the pictures, it was good to be emotional together. It feels like it has been a long time since we last had the opportunity.

These thoughts and events followed a good day for Claire and me. I was the overnight caregiver for Claire last night and we had autonomy until 3:30 PM CDT today. Claire had a more predictable night of sleep last night and was able to collect about 10 hours over the course of it. Between getting up to change her diaper, her feed line and reposition her, I was still able to grab about 7 hours of sleep. We were both sufficiently rested for today. We started the day with an hour and a half of physical and occupational therapy directed by yours truly. Claire took a nap in her bean bag chair in preparation for the day’s biggest event: I took Claire outside for he first time since this began.

Claire’s previous wheelchair ride attempts have ended with increased overall agitation and contempt. The movement, light, sights and sounds were unwelcome and overwhelming. Today was different. Claire was much more subdued and seemed to enjoy the ride. We spent 15 minutes in the lovely Dallas heat, grabbing a little sun and letting Claire feel the breeze against her face. I was very encouraged by her agitation level during the trip: it was almost non-existent.

It was nice to get Claire outside. She has always loved exploring outside. It just felt more healthy to be out and about. I enjoyed watching her open her eyes, pupils contract and eyes search the sky. It did both of us good.

Claire spent more time out of her bed today than in it. We are making a concerted effort to make her days more active, so we can work on recovery and make sure she is sleeping through the nights instead of the days.

Aside from a somber evening, I enjoyed my day with Claire. I enjoyed seeing her agitation levels moderate. I am hopeful that a productive week is ahead.

My apologies for he belated update. Thank you for staying with us, prayers, hopes and all.

I crossed paths with two of the first responders for Claire last night just as I was leaving OCH. Kristen and Veronica had come to see her and we were happy to bend the rules so they could see her. It’s important to us that the people who saw her that day see the progress she has made to date. It helped calm their minds as well. We spent about an hour discussing what happened that day and it was eye-opening to see which pieces I recalled and which I blocked. While I may forget pieces of that day, I won’t forget the part Kristen and Veronica played in saving Claire’s life.

Claire had a challenging night last night. Her sleep cycle shifted and made her night more fitful. We had hoped she would recover some of the lost sleep today. She hasn’t. The doctors wanted to run some labs on her this morning. The subsequent finger pricks made her irritable and weepy. By the time she had managed to calm down, a therapy session was scheduled. The cycle continued throughout the day. I hope the sleep loss will result in a quiet night; however, there are no guarantees.

There have been few other changes. The occupational therapist mentioned that Claire’s range of motion is improving. Tiffany and I are being aggressive with her therapy when she’s not in session. Though Claire’s loud protests muffle our soft commands, she is working hard and bearing the pain. We are proud of her.

I went to pick up some food before heading to OCH today. As I got out of my car, I heard my name. I was shocked to see Claire’s admitting doctor from Medical City. He joined me for lunch and we had the chance to discuss a variety of topics. He is not only the one that stabilized and first administered care for Claire, he is also a friend. Tiffany was jealous that I got to see him and not she. He is a part of our family now and it’s hard not to regularly see those you trust on a regular basis. We grew accustomed to his advice, manner and attention. We miss it. I was glad to share a meal with him, even if his was just a cup of Coke.

Claire’s cheerleaders continue to increase in number. Tiffany and I read each of the comments and marvel at the number of times they begin with “You don’t know me… . ” We are happy so many people are cheering for Claire and keep her in their daily prayers and thoughts. It’s helping sustain us. We thank you for it.

Our first hour of training as caregivers took place today. Tiffany and I were eager to learn about Claire’s needs and the tools to meet them. The session escalated when competitive opportunities were presented. I have to admit that Tiffany was faster at getting the correct dosages into the syringes. I, however, clearly took home the gold star after introducing a new technique to the nursing staff for cleaning the G-Tube lines. Our relationship has always had a healthy dose of competition beginning with the day Tiffany kicked me in the shins after a sound beating at air hockey. It was nice to rekindle that portion of our relationship today.

We were able to have some fun today after getting some uplifting news this morning. My mom stayed with Claire last night and was present when the neuropsychologist came to test Claire’s coma scale level again. We got a ‘confirmed blink.’ The test includes a light test for vision: the doctors shine a pen light into her eyes and check for pupil dilation and reaction. She will only blink if she can detect it visually. She did. Claire’s vision is improving. We pray and hope it continues to progress.

The results of the test came back better than we expected. Claire was previously scored a 1.8 on the Rappaport Coma Scale. We were amazed to see it had improved to 1.2. The score improvement came from the visual test and her auditory test. Claire had not reacted to the auditory stimuli in previous tests. She reacted to the ringing bell today. Claire also reacted better to pressure. Vocalization, olfactory and threat stayed the same. Overall, the test results showed that Claire is very close to the lower limit for ‘near coma’ and progressing toward a ‘no coma’ designation at an even rate.

Claire is still working on her sleep cycle. Her pattern changed last night. While she accumulated the same hours of sleep, they were more sporadic. We started tampering with her medication frequencies which may have had some effect. Tonight we will be doubling the dose on her seroquel which is an anti-anxiety drug that helps Claire’s agitation. It has been spaced out to carry her through the early morning hours. We hope that this normalizes her sleep cycle for her sake and the caregiver in the room. Everyone is getting tired and you can see the fatigue in Claire’s face.

Tonight my baby sister and her main squeeze, Brian, are coming out to stay with us for a few days. This will be the first time I’m meeting Brian. If his mom is any indication of his character, then the meeting should be a success. Brian’s mom sent us a package a couple of weeks ago that had charm necklaces with Claire’s name on them. They made Tiffany cry. While my sister has been tormented away from family since this began, I’ve heard that Brian has been taking care of her. That’s all I’ve ever wanted for both my sisters. So I’m looking forward to meeting him and only wish it was under happier circumstances.

Tiffany got to have a girl’s night out last night. Autumn, Heidi, my sister-in-law, my mom and Tiffany went to see the new Karate Kid. The girls have been wanting to see it and Mommy was glad for the distraction.

My distraction tastes have always been for higher brow fare that makes me nostalgic for Colorado: I’ll be spending my evening with my friends Harry and Lloyd of Dumb & Dumber. The movie isn’t for everyone but it has my number and still makes me laugh. I need to laugh.

Claire is settling into a sleeping routine at OCH. She falls asleep without pharmacological assistance around 8:00 PM until around 4:30 AM. The doctors were stacking her meds around 9:00 PM, so when 4:30 rolled around we couldn’t give her anything to calm her down. We will be trying a new schedule tonight that reserves one of the anxiety meds for midnight hoping it carries her through to a more reasonable morning hour. We hope it works so both she and the respective overnight caregiver can get the rest they need.

Claire did well today and wasn’t as agitated as yesterday. We continue to hope the agitation will moderate soon. It feels similar to he time we waited to extubate Claire: we can’t move forward until she clears this hurdle and it drives some high anxiety. I anticipate we will experience a couple days of relief when she is more calm and less sensitive. We need those days.

There’s not much more to report. We thank everyone for the offers to help. We hope to have a better idea of our needs in the next few weeks. For now we are thankful for your offers, prayers and support.

The Care Conference was short and to-the-point. What was the point? Wait and see. We didn’t learn anything new during the meeting. The doctors are pleased that Claire is slowly becoming less agitated. But the overall refrain was the same: Claire is going to have a long recovery and nobody can tell us how fast or how good it will be.

It was nice to see Claire’s team in one room. Everyone was very attentive and answered our questions with care and candor. Tiffany asked about Claire’s cortical vision impairment (CVI) and how the vision challenges are factored in her coma scale score now. Doctors will continue to test her vision, hoping it improves, but will factor it out of the coma scale score.

I asked some clarifying questions regarding treatment and refrained from asking the question to which I really want answers, because there are no answers now. The uncertainty is taking its toll on my psyche. With the lack of sleep, I’m becoming a little surly. I made sure to order dessert tonight hoping it will take the edge off; however, they brought me a dessert with fake apples. I can’t abide fake fruit. So no dessert.Or maybe just a couple bites. Who am I kidding? It’s already gone.

We said goodbye to Tiffany’s mom today. We love her and are so thankful that she was with us to help watch Autumn, Heidi and Claire while Tiffany and I sorted out the early brouhaha. Autumn couldn’t let go of her Gram-Gram. Heidi was glad she got to plant flowers with her. We look forward to seeing her again soon. Please pray for her safe travels.

The waiting continues and we hope that Claire’s agitation will soon move to a level that makes it conducive for more aggressive therapy. Thank you for your support.

Tiffany called me five hours ago. She wanted to tell me the results of Claire’s eye evaluation. Claire is medically blind right now. She has good corneal strength and her pupils react to light; however, the doctor believes her brain isn’t processing the data input right now.  We were aware that this was a possibility. The Medical City neurologist had mentioned that he saw some mild trauma to the occipital lobe in her brain. The damage is manifesting itself as blindness right now, but we don’t know to what degree. Today’s doctor said she sees this outcome frequently with hypoxic brain injuries and the ultimate outcome is difficult to predict. She has seen recovery and she has seen permanence. Those were the facts.

It was a shot across the bow for us. It pains us to think that Claire may be unable to look at picture books again. Claire would spend hours between book stacks. The week before the accident she completed her first reading lesson with Tiffany. She proudly placed a sticker on her chart denoting she had completed the lesson. She’d only started seeing the world as a place to explore and we’re scared she may not see it again.

The doctor cautioned us that the injury is still young and the chance to regain sight is possible. So we’ll continue to hold on to that hope. And we are thankful for the support of our friends and family who inspire that hope. The eye specialist told us we should get something that caught light and was multicolored because she seems to respond to light and color changes. When Tiffany called to tell me this, I told her that I already have something that works. I received it this morning. One of the police respondents to Claire’s emergency services call has continued to follow-up and pray for Claire. He came to check on Claire on Memorial Day. He and his wife sent her balloons. This weekend he went out-of-town and brought a gift back for Claire because we’d told him Claire likes balloons: his gift is hanging in her room now.

The colors are brilliant and when the light hits the balloon it showers beautiful color casts against the wall. It was exactly what the doctor recommended. When Tiffany heard about the gift she cried. It’s precious to us and we are eager to tell Claire about the man and his family who gave it to her.

While today was difficult, Claire was again not as agitated as days previous. She started the medicine that will introduce more dopamine to her brain and make her more alert. It takes a few days of continuous administration before we see the effects. Tomorrow is our Care Conference. We are eager to hear the plan for the next five weeks and also anxious about the evaluation results from the professionals. We remind ourselves daily that we are hoping for Claire to astound. Today we were told that our daughter may be blind. I think and hope otherwise. Whatever other low expectations may be set for her, I know that Claire has always exceeded them. I expect she won’t be getting out of that habit anytime soon.

Thank you for your prayers and support. We ask that you continue to keep us in mind tomorrow and as Claire works to arrange the communication between her eyes and her brain. Your support gives us strength.