St. Lucia Hospital

We made it home yesterday!  Before we left we got some great news from Lucia's neurologist, Dr. Litwin, that she saw no sign of seizure activity while reading her EEG.  Also, the doctors noted no abnormalities on her spine or brain while reviewing her MRI.  As 70% of the PKS kids suffer from seizures, were very relieved that we don't have to worry about them at this point.  The sleep study did show significant central and obstructed apnea and we hope that will improve over time.

As much as we LOVED Lucia's doctors and nurses at Rocky Mountain Hospital for Children at PSL, we were thrilled to go home.   Shortly after returning home, the home care equipment started to arrive.  Her feeding pump, oxygen tanks, apnea monitor, and pulsox monitor (measures oxygen in her blood) made their way into our house- 5 deliveries and 8 people in all giving us directions on how to operate our infant daughter's lifelines.  After trying to take it all in (more than we've ever paid attention to anything) we geared up Lucia.  2 monitors, a g tube feeding device, and an oxygen tank all attached with various wires and two with alarms-we didn't even know how to pick up and hold our baby.  After a few tears, a little yelling and some deep breaths we situated Lucia in our arms and once again got lost in the love for our little Lu.  Saturday night was not easy but we made it through.   We were also happy to not get any complaints from the neighbors about our new Vegas noises that rang throughout the night.  The alarms do not always ring on emergencies-they can alarm when she simply moves her foot too much or for no apparent reason at all.

We were so overwhelmed with all the devices on Sunday that we called her pediatrician, Dr Brandon Davison-Tracy, who has been more than a doctor throughout all of this,  he is a saint to our little girl and us..  After going over all the equipment with him he suggested we call the hospital to see if it was all necessary- as he thought it was not.  Fortunately, the hospital made a mistake and we will be able to send one of the monitors home tomorrow.  As for the pulsox monitor, we get to keep that- which is the one that loves to beep/alarm quite often when she's hooked up.  When we are told Lucia no longer needs the pulsox, I will gladly use one of the skills I learned in college and chuck it into the street.  Even so, Jules and I are much more relaxed about all of this after getting situated.  

With all of that said, Lucia is doing awesome.  She hasn't had any of the scary drops in her oxygen levels and her stomach has been taking food down like a champ.  We had a fantastic BBQ tonight-thank you Phoebe and Josh,  and enjoyed being home together as a family.  A week full of doctors appointments await but on Friday, Jules and Lucia are heading to Vail with family and friends for a much needed vacation.  

Again, we'd like to thank everyone for the dinners- a special shout out to Amy and Dustin for a treated last meal in the hospital from our favorite restaurant-Tables,  cards, flowers, little gifts for Lu, blog comments and nice phone calls.  Also, we'd very much like to thank all of the PKS families that have been willing to share thier stories, all of which give us the strength to stay focused.  Many of these families have been through so much, most of which is still very hard for us to imagine but somehow they make things work.  

Love,

Juliet, Jason, and Lucia