The day I got religion

[January 8, 2008, email from my sister Ellen to friends and family]

Hi all,

I just wanted to get another update out to all of you. Roxie had a tough morning today. They had a really hard time getting her oxygen levels where they needed to be and had to manually give her breaths for about 1 1/2 hours. Her heart rate and other vitals went bad during this time and it was a very scary 1 1/2 hours for Phelps & Kate. Roxie is now stable and has been since the incident was over. The doctors made the decision to switch her breathing tubes to infant tubes (so they are smaller) and these seem to be working. I don’t understand the specifics but they increased the pressure in the tubes but decreased the volume. Because of all the stress to her body this morning, they have spent the afternoon trying to allow her to rest. Therefore, along with the sedatives and pain medicine, she is also on a paralytic drip. They also added a direct line into her arteries to take a constant blood pressure reading so they can keep a better eye on everything. Roxie’s blood readings (alkaline vs. acid levels) are improving and the CO2 levels are also improving. As you can imagine, this was a very frustrating setback, but the doctors and nurses do believe she has turned a corner and is getting better. Her Chest Xrays continue to improve and she has much less secretions coming out of her lungs (they said today that the fluids coming out is now clear, not yellow anymore), so her body is doing a great job of fighting off the RSV and pneumonia. The hard part is figuring out how best to get her breathing on her own. As you all know, Roxie is a special patient because the combination of her low muscle tone and high sensory issues. When they decrease sedation, she is just so sensitive to everything that she gets agitated...so they are moving slowly on this.

They do not know the cause of the crash Roxie experienced today, but one of the nurses believes the most likely cause was a mucus plug in her breathing tube. We don’t know for sure and just pray that it doesn’t happen again. The goals over the next few days are to get Roxie off the breathing tube, maintain seizure control and decrease sedation. All of this will have to occur before they can leave the hospital.

It looks like they will likely be in the hospital for a while longer. If any of you want to do a meal for them and haven’t had a chance yet, please respond to this email. No pressure, just know this email list has grown and wanted to let everyone have an opportunity. We have dinners covered through Sunday (other than Saturday night).

Again, thank you to all of you for your thoughts, prayers, food, visits, emails and phone calls. Your friendship and support of the entire family is more helpful than you can know.

Ellen