Month: June 2010

We started today map in hand and only made it half way. We did get the PICC line in here arm without any complications. We did get the surgery scheduled for tomorrow. We did not, however, meet with the neurologist or admissions representative from Baylor Children House. We continue to learn how to live according to hospital time: the schedules are highly fungible.

Had I started writing this 10 minutes ago I would have been happy to report that Claire had calmed down and was resting from the days events. Her calm has dissipated and she’s again starting the build up: blood pressure and heart rate are both rising in tandem, hand in hand, buddies for life. I’d prefer they were a little more laid back. The nurse just informed us that we are going to up her precedex a little so she can make it through the night. Precedex isn’t a primary sedative but does help moderate high heartrate and blood pressure.

We’ve been asked for an update on the grandmothers. Both Gram-gram (Tiffany’s mom) and Nana have been busy displaying that you never stop being a mom, even to your adult children. They make sure we are fed, they sit for hours with Claire and they play with Autumn and Heidi. They’ve been strong for us and they cry with us. We love them.

Today we had he difficult task of saying goodbye to Tiffany’s dad, Ed. We were sad he could not stay longer and hopethe next time we see him Claire will hug him and tell him she loves him. We love you Dad.

We have another family member departure coming up on Wednesday. We don’t want to even think about it. So we won’t. We don’t want him to go.

As always, thank you for your prayers and support. Please pray that Claire has good rest tonight. Also please pray that her posturing is symptomatic of her withdrawals.

Today has already been a hard day. Claire is completely off the sedatives and she is miserable. She is posturing a lot more than she has before and it’s troubling us both.

Claire has a big 48 hours ahead of her as the doctors try to prep her for transfer to Baylor Children’s Home for rehab.

First Claire will have her arterial line moved from her femoral artery to under her arm. We’re doing this to avoid infection and also to get some of the cords off her legs.

Claire is also scheduled to get her g-button in tomorrow which will free her from the nose tubes. The surgery will take about an hour.

Because of how busy it will be for the next two days we ask that visitor flow be kept at a lower level. We will be in and out of the PICU while Claire goes through various procedures.

We will be meeting with a neurologist today also. I will post some more details later today once the avalanche of information abates.

Please keep us in your thoughts and prayers today. It’s goig to be a challenging one.

Barring a major change, this will be today’s only update.

We have had little progress today from Claire instead focusing on getting closer to the time when we can extubate from the ventillator. Claire has also started to go through more withdrawals as we back down on the pain and sedative drips. Doctors have started her on methadone and adavan to compensate for the withdrawal symptoms. It’s hard to watch.

Today’s nurse indicated that we shouldn’t expect to move off the ventillator until tomorrow: the staff doesn’t want to make a major change this weekend.

Autumn and Heidi are back at the hospital and were happy to see the Dendys today. The Dendys are great with the girls and good friends and Texas family. The girls are going to get out of the hospital and play at the Dendys’ house today. It will be good for them.

I just got back in the room with Claire and Tiffany. I’m watching Tiffany brush her hair and put small barrettes in her hair. Before Tiffany started brushing her hair, Claire’s eyes were open and staring. As soon as Tiffany started brushing, Claire’s heart rate moderated and her eyes began to drop. We mark this as the first time Claire has ever been put to sleep by brushing her hair.

The wait continues. Thank you for waiting with us.

I thought I’d start this post with an update on Autumn and Heidi since a number of you have asked about them on the comments. Both are doing marginally better than they were during the first few days. Our good friends, Jon and Becky, took them home tonight to escape the hospital. I heard from Jon earlier and he reported that Autumn was having the harder time and asking for some alone time. Heidi has been more herself. Both are emotionally on edge and were trying to discuss the events in due course and distract when prudent. We’ve had a number of candid and sobering discussions this week. The situation has given rise to some separation anxiety for both kids and parents. Tiffany and I would prefer to have them close – they give great hugs – but we know that it is important that they escape and act like kids. They don’t always understand his dynamic and we hope it pays off long term. Needless to say, both Tiffany and I foresee some therapy in the coming months for the entire family. All in all, Autumn and Heidi have been precious and strong. We can’t wait to sleep under he same roof again.

Regardingan update, there is still not much to relate. I was overly optimistic about the ventilator use being discontinued today: we are close to where the stats need to be, however, the removal will involve a much more involved testing phase than I thought. While I was naive about the process, I understand the endgame: the goal is that once the tube is out, it stays out. There are a couple of additional items the doctors will be looking for to make sure that occurs. The time it takes for those items to appear could be days away. So updates may be shallow for a while.

The doctor took note of Claire’s feet and hands tonight as well. They are a little stiff from the posturing so she will be ordering some braces be made for her legs and arms to keep them from flexing so aggressively.

The majority of our discussion was focused on long term care. I hink both Tiffany and I have avoided this somewhat because we still have such a limited view of what we’re up against. The doctor was very candid about nutrition options and encouraged using the “button” inserted directly into her gut.

We also began to discuss rehabilitation options. It’s hard to wrap our heads around what this will entail because we don’t know what Claire will be working with. Will she be able to talk? Walk? See? Comprehend? It’s all a mystery right now, so talking about it felt premature.

We talked about it anyway. While we understand that there willbe rehab, both of us are still of the mind that the doctors treat according to the averages. We still hope for an exceptionlly above average recovery. We are asking for a miracle and to get one means that Claire will defy the expectations. And so we wait.

Thank you again for all the thoughts, hopes and prayers. As we settle in for the long haul, we understand that the acute feelings you may have shared with us for the last week being to take a toll. We thank you for continuing to keep us in mind as the horizon expands ahead.

I’m writing this entry from Claire’s bedside as I watch her sleep. Nothing new has happened since the last update. I did, however, omit some minor information from my last post.

One of our excellent day nurses, Kara, said she knew she was a real nurse when she started gettig so excited about pee. Crude yes, but touching when you understand that base functions like this indicate certain levels of neurological function. We had similar hopes today when Kara reported that it seems Claire is passing gas. It’s indicative that her digestive system is starting to function and we’ll be watching to see if she can take this first step to the next level. Here’s hoping we will soon be more excited about certain functions than we’ve ever been.

I’d mentioned that Claire’s ventilator settings needed to all be at a certain range before they’d remove the tube. We’re almost there. My unqualified forecast is that we’ll be there by the end of tomorrow.

I wish I could give bigger and more progressive news. I hope all of you that were waiting for an update can sleep soundly tonight. Thank you for your prayers, hopes and support.

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.