Monday, June 7: Update 2

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.

Monday, June 7: Update 1

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.