Promise

I definitely followed through on my promise.  Friday, the 21st, the breathing tube came out and I made sure we got time together out of the bed.  It was a long time coming, 58 days to be exact.

The biggest concern when pulling the tube was her lungs and making sure the secretions we being coughed up.  We started with CPT vest therapy.  This involves an inflatable vest that is attached to a machine.  The machine mechanically performs chest physical therapy by vibrating at a high frequency.  The vibrations to the chest loosen and thin the mucus.  This vest treatment is most commonly used in patients with cystic fibrosis.

We scheduled vest treatments every two hours during the day and every fours hours overnight to make sure her lungs stayed open.  Surprisingly, the worst part for Lucy is getting the vest on.  After its on, she usually falls asleep.  However, having the respiratory therapist come in her room every two hours, along with other staff in and out all day, Lucy's anxiety is at an all time high.  So much so, that she started grinding her teeth.  Can you imagine sitting in a room with someone grinding their teeth for an hour?  Now do it for twelve hours?  I may need medication soon!
We are working hard to keep the traffic in her room down and some anxiety medication throughout the day.  At night, we are using melatonin to help her sleep through the night and it has allowed for a string of good ones.  Better sleep equals better days!

Last week we started prepping for home.  Don't get too excited, there's no official (or unofficial) date.  Home oxygen and feeding supplies were ordered.  All of her IV medications have been switched to oral.  Coumadin has been started to get her dosing just right and we'll look to stop heparin.  In order to get to floor two (step down) we still need a few things to happen.  We need to be off nitric completely and off high flow.  That means Lucy needs to keep her saturations above 75 with less than two liters of oxygen.  Right now we are on four liters and are experiencing some episodes where her saturations drop to the fifties.  The other issue is her stomach.  We are still draining a significant amount from the NG tube.  When we have tried to clamp it to see if she can handle it, she ends up throwing up the bile.  Unfortunately, being intubated put her as a high risk for aspiration.  Aspirating on vomit could have a huge impact on her lungs.  We don't quite have answers and will have an ENT evaluation in the next couple days.  With that risk, it means she also can't have food.  Luckily for us, she isn't very interested in food or water.  We will need a swallow study before we can proceed with oral feedings.  Whether that happens as in patient or out patient procedure will depend entirely on Lucy's desire to eat.

We have been working to get Lucy stronger and have been out of bed several times.  She can usually last about thirty minutes and can sit up on her own without support for at least ten minutes.  Each day she is getting a little stronger.  And each day we get some more big smiles.

Her favorite thing is to play with play doh. For those at home, that's a hot dog, banana, blueberries and a cupcake.

We have had some minor set backs with plural effusions and hazy x-rays, but we have fought off anything major with an extra dose of diuretics and keeping the CPT treatments throughout the day.

Praying specifically for the following:
Lucy's anxiety to subside
Lucy's oxygen saturation to stay about 75 with less than 2 liters of support
Lucy's stomach and vocal cords to heal
Lucy to gain strength
For us to be home soon

much love and thanks to our tremendous support system.