Author: Tyler & Tiffany

Today’s Care Conference focused on what we can expect over our last week at OCH as we prepare to take Claire home. OCH has been great at coordinating the partners we will need at home: food supplies, meds, equipment and therapy schedules have been handled by someone on our Care team while we provide the inputs. It has helped alleviate the stress and the confusion. There is a lot to put in order and we feel that OCH has accelerated us along the learning curve.

Our conference ended and we were on our way to Claire’s fourth aquatic therapy session. Claire had a great ride over to the rehab center and chilled poolside while we waited for her therapists. All that changed when she entered he water. Claire didn’t take kindly to the pool this time and needed some extra coaxing before she settled down. But when she did settle down, she did so in a big way: Claire was more alert during today’s session than any of the previous three. We enjoyed watching Brita, Claire’s physical intern therapist, carry Claire in the water. She did a great job settling Claire down. Claire enjoyed sitting upright in the water and let Brita know she did not want to recline. This was the last time Claire will be at the Baylor Rehab Center and we will remember it fondly, fire alarms and all.

Tomorrow is Claire’s early morning procedure for phenol and Botox injections. We are anticipating a great outcome and look forward to updating you on her results. Thank you for the continued support!

I hit the wall today so this one is going to be quick.

The Sandman has finally caught up to me. The three and four-hour nights of sleep have left my sleep reserves at a deficit. It was difficult to keep my eyes open today and everything looked like a bed. And now I’m ready to crawl into bed, which is rare because I don’t often get to bed before midnight.

Claire is already asleep. She knocked off around 8:45 PM today. She is having a harder time adjusting to the feed changes than at previous feed adjustments. So we are moderating her feeding a bit to give her stomach a break.

Aside from the digestive discomfort, Claire was very alert today. Her eyes were open and searching. Her face was often relaxed and pensive. Her muscles are showing some rigidity relief as well. Her left bicep is not as spastic and her left foot is more nimble. These two areas have been the most troublesome and it’s nice to see some positive changes.

We will continue the fight against muscle spasticity this Wednesday when Claire goes into the operating room for her botox and phenol injections. We are all looking forward to the benefits that come with these procedures: Claire’s rigidity should be greatly diminished from them. We feel that a portion of Claire’s continued agitation can be attributed to her muscle discomfort. The injections should alleviate the stress and pain in her muscles and we hope they will improve her demeanor.

We have a Care Conference tomorrow morning followed by another pool therapy session. This will be our last Care Conference before discharge. We hope all goes well and we continue the charge toward home.

Thank you for your support. Good night!

I heard Heidi’s tears from the other room tonight and asked her what was wrong. She came around the corner red-eyed and said she missed Mommy. I held her while she explained that she keeps seeing things that belong to Tiffany, and they make her sad. These seven weeks are taking their toll and even the strongest are showing the weaknesses in their armor.

Heidi has always been our valiant family warrior. She is fiercely loyal and burns for her family. She abhors strife in her family. She’s very protective. When she was small enough to be in a high chair, I’d come up behind Tiffany, growl and bear hug her. Heidi would provide the soundtrack yelling all manner of protests for me to leave Mommy alone! When she walks she bobs her head from side to side. She makes me smile.

Heidi also internalizes her feelings. Heidi is most like Tiffany emotionally. She is easy stung and takes things personally. She is eager to please and make peace. The last thing she wants to be is a burden to her family. And this is why we watch her so closely right now. When we were still at Medical City, Heidi went home with Grandpa and Grandma one night. I found out the following morning Heidi was discovered in the middle of the night crying by herself. When I asked her why she hadn’t gotten anyone, she said she didn’t want to wake anybody up. Heidi thinks of herself last. So we’re working extra hard with her to draw out what she’s feeling so we can grieve with her.

It is hard for me to watch my six and eight year old daughters deal with such a maturing event. They love their little sister and miss her much. My heart hurts for them.

Some more healing will come in a week when we bring Claire home. Both girls are helping us prepare her room and space. They are eager for us all to be under the same roof again. It’s not the cure all, but it will be a much needed salve.

Claire still has some work to do before she’s homeward bound. We’ve been working in getting her feeds to a normal schedule and had a setback today. She lost her dinner – and then some – tonight after finishing her last feed. We suspect the amounts are too large for a single feeding and overtax her little stomach. We will moderate tomorrow and hope she does better.

Otherwise, Claire continues to show signs of increased awareness. Her malice toward the hospital grows every day, and she looks forward to the time she escapes to the outside each day for her walk. We’ve started encouraging he with tales of finally going home. That usually calms her down.

The week ahead will be busy. It’s the last full week before discharge. We have a lot to accomplish both here at home and at the hospital. More family comes in on Tuesday. Our friends have been brilliant the past few days bridging the gap until in-house guests arrive.

Thank you for your prayers and support. They continue to sustain us.

My mom left this morning, picked up at 7:15 AM and on the plane home by 9:00 AM. We made it a late night last night finally getting to bed at 2:00 AM. We said our goodbyes, made tentative plans for her return and turned in. I woke up to a tearful Autumn. Aside from the emotional trauma of the past seven weeks, Autumn is always crushed when her Nana leaves. She was morose all day and frequently commented that she misses her Nana.

So do we. My mom and my sister Emily were the first responder family members down here, 19 hours after I pulled Claire out of the pool. Just thinking back on when they arrived is surreal. I’ve tried to explain what it felt like when I came around the corner and saw them both walking down the Medical City hall, luggage in tow. I can’t. I was overwhelmed. All I could do was hug my mom and cry.

My mom hasn’t stopped hugging me since she got here. She’s taken care of Autumn and Heidi, making sure they were distracted, entertained, fed and loved. She’s stayed with Claire, battling insomnia, sometimes due to Claire, other times because her body and mind wouldn’t let her sleep. She talked with both Tiffany and me into the wee hours of many mornings. She’s cried with us. She been strong for us. She’s broken down for us and with us (which has been frequent).

While I never wanted to put it to the test, I always knew that should tragedy strike, my family would be champions for us: my mom has been our family’s heartbeat, present and strong when others could not be here. What little joy we can take from this situation comes from how quickly our family rallied around us and with such fervor. And the rally came with their own sacrifices. I was exposed to the joy that comes from being married to your best friend from my parents. They’ve fought for each other for the last 30 years. The elapsed time since May 31 has marked the longest time they’ve been apart. Tiffany and I can’t imagine being separated for long because we crave being together so much. I know it was the same for my parents. They gave us an incredible gift amidst our grief. It was one big sacrifice for their broken children.

This is far from over. But my mom was here to help get us started. She picked us up so we could walk again. We just hope and pray that the next time we see her, we’ll have done the same for Claire, and we’ll be able to walk her into Nana’s arms.

See you soon Nana. We love you.

If the next 10 days proceed as we expect, Claire will be continuing her recovery at Baylor’s Grapevine Our Children’s House outpatient facility. We were excited to learn that the Grapevine facility also has an aquatic center on site: other satellite offices have access to pool therapy but not on site. The aquatic therapy was one of three items on or wish list for Claire’s outpatient rehab center. The other two included a great therapy staff and close proximity to home. We ended up getting all three. The Grapevine OCH staff is well respected and the facility is only eight miles away from home. Now that we’ve nominated the Grapevine location as Claire’s provider, we begin the process of scheduling evaluations so we can make a seamless transition to outpatient without losing any momentum.

We continued that momentum with feeds and meds today. We eliminated another feeding time today and shifted her feeds forward. This puts Claire on a more normal feeding schedule with no feeds occurring a night. This is important because it eliminates two interruptions at night and helps get her ready to transition home. She had a little bit of reflux with this shift today, so we are going to pace the feeds over a longer feeding period tomorrow to see if her stomach will adjust to the increased volume better.

We also worked with today’s doctor to come up with a gameplan that eliminates some of the meds. She is now completely off Ativan and will begin coming off the Seroquel tomorrow. She is making the changes with few – if any – side effects.

Claire had another good night of sleep last night followed by an equally good day. Her ups and downs today were even and she responded well to therapy. While it’s hard to recognize the day to day changes, we marveled at how far she has come since admission at OCH. We are optimistic that the progress she has made so far is just a scout for the recovery to come.

Tomorrow is a big day for us. My mom leaves early tomorrow morning, homeward bound for Colorado. I’ll have much more to say about this tomorrow. Please keep her in mind as she flies home and makes the adjustment back to ‘normal’ life. We will miss her something fierce.

Thank you for your prayers and hopes.

The march to discharge day continues and we’re scrambling to get everything we need done. Today we met with a home health agency to discuss a part-time nurse for Claire during the day. This is contingent on another ball we’re juggling: Medicaid approval is the only coverage we’d have for in-home care. Our insurance company excludes pediatric nursing care. We take consolation in the fact that Claire did not need a tracheostomy, and she doesn’t have any long-term pulmonary complications. These two items alone require much more equipment and attention to care in the home. We are blessed that the extent of Claire’s medical care is feeding and medications both of which are administered through her g-tube. The bulk of our time and effort, therefore, will be placed on rehabilitation. It really is a blessing and our hearts ache for families that must deal with additional, more complex treatments when they go home.

Claire receives about an hour of rehab with her therapists each day. We administer the other two and a half hours of rehab she receives each day. She doesn’t like it. But she’s getting better. She is beginning to comply with simple commands on a more frequent basis. When we tell her that she needs to work on calming herself down, she makes the effort. When we ask her to open her eyes, she makes the effort. We are excited about the effort. It doesn’t always produce results we can see, but we see the struggle and we love the struggle.

It is hard to see Claire in pain when we do therapy. But we chalk it up to eating vegetables and doing homework. We’ve always seen our role as parents is to make sure that our girls are fully equipped to contribute and make effective decisions in life. For all parents, we understand that we instruct our kids to do things they don’t want to do because we know what is best for them. Our role has not changed. The challenges have. But we will continue to make Claire do the things that are best for her because we still need to give her the tools that will serve her in later life. Right now those tools include protecting her muscles from working against her. They include protecting her range of motion. They include the therapy she often protests against so strongly.

But we know she also needs breaks. We took some long walks today as a family in the coveted Dallas heat and humidity. We stopped to sit and feel the breeze blow the heavy, sweat inspiring air against our faces. It’s really horrible. While we dislike the heat so much, it calms Claire, and she enjoys the walks. It’s a turning of the tables: we force her to do the therapy, and she forces us on death marches around OCH at 4:00 PM in the afternoon. She knows what she’s doing. I’m wise to her machinations.

The girls spent some of their time outside playing schoolyard hand games. It did all of us good, including Claire, to do frivolous things. Both Tiffany and I feel Claire is developing a distaste for the hospital and enjoys the escapes the walks provide. We don’t blame her and share her sentiments. We are all looking forward to taking Claire home.

Claire was very alert for the rest of the evening and had a look of calm and content on her face. I hadn’t seen that face since before this happened. It made me happy.

Thank you as always for your prayers and hopes. We are forever indebted to you, our friends and family, whether we’ve met you or not.

Claire had another test with the neuropsychologists today. She scored the same on all dimensions except one: Claire followed a simple command today which improved her Rappaport score. The doctor told Claire to raise her arm. She did. Claire had followed some commands with us when not in a therapy session. It was nice to have one of the practitioners witness it and record it as a positive move out of the coma. It also put us in good spirits for the rest of the day.

Today’s pool therapy session was much improved from yesterday. The warm pool and absence of fire alarms encouraged a positive outcome.

All in all it was a good day. Claire worked hard and kept up with the aggressive therapy pace. She crashed around 7:30 PM and was sleeping soundly the last I spoke with my mom. I hope it continues through the night.

My apologies for the abbreviated update. My reserves are running thin and I’m headed for bed. Thank you for all the prayers and support.

Claire’s beneficial pool visit last week was not a predictor of today’s trip. Things didn’t start off very well. The warm pool at the rehab center was out for the count: a biological attack made it unfit for service. So Claire was relegated to therapy in the large pool which is about four degrees cooler. Those four degrees were very important degrees to Claire. She voiced her displeasure for the first half of the session before finally moderating her body temperature and calming down. But Murphy’s Law says that what can go wrong will go wrong. The temporary calm was soon disrupted when the fire alarm system sounded in the rehab center. The therapist scrambled to cover Claire’s ears while we retrieved towels to wrap around her head. It was loud. And it lasted a long time. The alarm finally retreated and Claire finished out her session. It set a bar that we hope is not matched when she returns tomorrow.

Despite the hardships we were still appreciative that Mary, our therapist, got Claire to calm down and protected her in the water. She is great with Claire and we’re lucky to have her working with Claire.

Claire’s walk today was less eventful and had a calming effect on her. We made two laps around the OCH campus before Claire let us know she was done and ready to head back inside. We met with the speech therapist to discuss strategies to help minimize the strain in her facial muscles. Claire has been tensing more on the left side of her body. This is influencing her facial muscles as well and causing her jaw to set unnaturally to her left. We learned how to massage her face, focusing on her cheek and jaw muscles to help alleviate the pain in those areas. After working with her today, her mouth is more relaxed and not as tense.

We discussed new treatments for Claire’s muscle spasticity today. We have three options available to us, one of which was nearly performed before leaving Medical City. The most invasive option is called the ITB pump: it is a Baclofen pump that is surgically planted in Claire’s abdominal cavity and feeds Baclofen directly to her spinal cord. This is the option intended to treat severe spasticity. Claire does not have severe muscle rigidity yet, but it is possible that it could develop. Tiffany and I and the doctor think this is an option that should be explored further down the road.

Because we don’t know whether Claire’s spasticity will improve or degenerate, we still need to employ a strategy that minimizes the downsides and equips her to perform well in rehab. The best tactic we feel for that is a combination of the second two options: phenol will treat Claire’s lower extremities and botox will treat her upper extremities. Both procedures are minimally invasive and lasts for up to six months before a renewal procedure is needed. This should give us the bridge we need to evaluate whether Claire’s spasticity is a permanent effect of her brain injury or a product of her brain calming down and will improve with time.

We continue to learn new aspects of our new life and how it will shape our near future. It is a daily battle allowing ourselves to grieve without succumbing to debilitating fears. It’s difficult to be positive with Claire when more sinister thoughts creep at the corners of our mind. The struggle to remain truly positive and speak encouragement to Claire leaves us exhausted at the end of the day. Reading your comments helps us renew our strength and prepare for the nights. Thank you for your support.

Claire is responding to commands more than she has the past six weeks. Her pattern is still inconsistent and her effort contingent largely on whether she is agitated or not. She is, however, making a concerted effort to comply when we ask her to act. Today, for example, we watched Claire struggle to lower her arm when we told her to do so. Claire raises her right arm straight out in front of her as an agitation symptom and tenses her muscles. It takes its toll on her body and energy reserves. Today during one of her tensed muscle episodes, we told her to lower her arm. We saw her elbow break in as she struggled to lower her hand to her chest. She made multiple attempts with us encouraging her and praising her along the way.

Claire also met with the ophthalmologist again today. The doctor noted that Claire’s vision is more responsive to changes in light than when she last saw Claire. The doctor is confident that Claire can tell the difference between light and dark, however, she could not say to what extent Claire can distinguish images. She also remarked that Claire has come out of her coma much more than when she saw Claire last. Claire’s pupils are more responsive, yet they are still sluggish. There is still little of which we can be confident, but enough to know that Claire’s vision is improving. We hope it continues down that path.

Claire took another walk outside today after her early morning therapy sessions. She enjoyed it. We hadn’t seen her this relaxed on a walk yet. It was reflective of the day. Claire was collected and subdued throughout the day showing agitation in mild waves and on an infrequent basis. We are encouraged by the pattern that she is setting as we continue to wean medications: with each dosage subtraction, Claire is showing fewer withdrawals and reduced agitation.

While the phasing out of specific meds is going well, we are having to increase her Baclofen levels to deal with her muscle rigidity. We discussed this with tonight’s nurse. The nurse sees this pattern occur frequently, however, Claire is not nearly as spastic as other patients. She has seen patients that have no muscle flexibility. While we understand that each recovery story is different, we were encouraged to hear that Claire doesn’t have to battle the extremes of muscle rigidity. We will continue to work with her every day and hope the muscle toning abates as her brain continues to heal.

Claire is making her second visit to the therapy pool tomorrow. The first visit was such a big success and we are excited that she has the chance to go back so soon. She will also be at the pool on Wednesday.

Thank you for following Claire’s story and giving us your support. We look forward to telling Claire about all the prayers and hopes she received. Talk to you tomorrow!

When I was a kid, I would have a series of recurring dreams whenever I had a fever. One involved my mom turning into a vindictive, angry goose who chases me around corners. That has always been a family favorite. One in particular has continued into adulthood. It is a nightmare that is difficult to recall and have a hard time describing after it wakes me from sleep. I remember the emotions and feel of the dream much more than the imagery. It’s heavy. Suffocating. I feel like I’m being squeezed from all sides, like I’m trapped and unable to escape. It’s a horrible dream.

The nightmare I’m living and that dream converged a couple of nights ago while I was staying with Claire. She had fallen asleep and I’d laid down to sleep also. Without warning I felt the oppression and fear from that dream. I recognized the feelings immediately. They were familiar and daunting. I got out of the bed and went and watched over Claire, pacing my breathing and hoping the feelings would go away. I can’t explain the sudden onset, but it shook me up and seeing Claire helped calm me.

I didn’t get to see Claire today. I had a soccer game and we wanted the girls to have a break from OCH today. And the feelings from my dream found me. It started after my game ended. The girls reminded me of a task I’d been trying to accomplish since starting soccer again. When I first started playing in this league, the girls made posters out of butcher paper saying “Go Tyler Go!” Each of them held one at my first game. To her dismay Claire lost hers under the bleachers. I had been meaning to get it back. I got it back today. It brought back the flood of memories from that day when Claire was cheering for me and how she’d told Tiffany she was sad because she didn’t think I could hear her. I remembered driving home after and reassuring he that I heard her cheers for me and they made me happy. I remember reaching back behind my seat and holding her leg to encourage her. With these memories came the oppressive feelings from my dream. I’ve wrestled with them all day. And I have not been able to see Claire to help take them away. I miss her.

Today’s hardships followed a difficult farewell last night. My brother and sister-in-law, Alex and Laura, drove home to Colorado last night. Before this happened I missed my brother and wished we lived closer. This has magnified those emotions. I enjoy the time I have with my brother and wish we had more of it. We miss both of them and hope to see them again soon.

Alex and Laura left with Claire in good repair. It has continued into today. We are continuing to wean her off more meds and she is responding well. We hope the trends continue.

Thank you for your prayers and support. We hope he coming week is a good one.