Thursday, June 17: Update

Tonight is my first night with Claire at OCH. I’m enjoying my Salisbury steak and powder mashed potatoes as I write this. OCH is having a Father’s Day meal downstairs, but Claire has had a difficult day and I’m not comfortable going down to grab a slice of pizza. So I’ll stick with my steak and Claire with her Ensure.

Most of the activity at OCH has been directed by Claire. The therapy sessions have been minimal so far as the OCH team waits for Claire to heal a little more. There’s not timetable on how long it will be and that uncertainty is starting to take a toll. We made the transition to OCH because the professionals (and parents) were eager to get started on rehabilitating Claire. Action has lacked. I’m trying to parse together what percentage of my urgency is due to being an eager parent and what percentage is due to valid concerns. I have to remind myself that it’s only been two and a half weeks since the injury and only three days that we’ve been at OCH. Those reminders become less potent with each day.

And each day brings new challenges. Claire threw up her breakfast Tuesday morning right before being transported. It happened again yesterday and twice today. The pattern is always the same. Claire coughs, is unable to expel or swallow the respiratory secretions, subsequently gags and then throws up. It’s painful to watch her struggle as her cheeks flush and her eyes begin to water. We discussed this pattern with the charge nurse and will begin some respiratory therapy and a new medication to help with the nausea and secretions. I hope we start tonight.

We will be starting additional medications on Monday as well to make Claire more alert. She will be receiving some meds that increase her dopamine levels. The providers were waiting to give this to her until week three to make sure her brain had time to naturally heal itself. They feel comfortable administering the drug next week in an effort to exercise her mind. We’re looking forward to next week because it seems the rehabilitation plan is set to begin in earnest then.

I intend to speak with our social worker tomorrow to discuss Claire’s plans. We have been told that we will have our first Care Conference next week on Tuesday or Thursday. I can’t wait that long. Between my Salisbury steak and this paragraph, I got a chance to go down and grab some of the aforementioned pizza while a nurse was in with Claire. I spoke with another couple that have been here since Mothers’ Day. Their son is a triplet member and has had some severe respiratory difficulties. They get to take him home on July 6. They were kind enough to share the wealth of their knowledge before they depart. They encouraged me to contact our doctor and/or social worker and voice our concerns about the pace. They shared our early concerns: one lesson learned is that they wish they would have talked to someone sooner.  They had a similar experience to our PICU family with their NICU family: it’s hard to match the level of care when the bar is set so high. From what we’ve heard — from friends and comments here alike — is that OCH can match that level. I’ll be discussing that with them tomorrow.

Thank you again for all your prayers and support. Please pray for wisdom and tact for me and Tiffany as we talk with Claire’s care providers tomorrow.