We love our OWN bed!

Kyra has been hospitalized twice since our last post. The first time was due to a high temp, which lead us to the emergency room with a blood draw and a dreaded possible line infection. After three days in the hospital it was determined that the positive blood draw was a circumstance of cross contamination. The fever was due to an ear infection, which was easily treated during her stay. THANK GOODNESS! We are fortunate that Kyra has been able to avoid hospitalization this long (thanks to great nursing care at home!) Her absent immune system makes life difficult, especially with school age children and a teacher in the house. I can tell you I have a heightened awareness, I am quick to exit an area if I hear a sneeze or cough. I can sympathize with someone from a distance!

A week ago we spent time in the hospital because Kyra's broviac line had a tear. Her line was able to be repaired without surgery. Kyra's broviac was cut in two pieces (which made mom very nervous) the bad was disgarded and a new piece was threaded into her existing line and glued together. We had to wait 48hrs for the adhesive to dry and hope that she had an open line when we were able to access it again. Who knew you could glue together a broviac line?! I was skeptical to say the least - I was thinking "it's rubber, like trying to glue two rubber bands together." So we waited and prayed... please no infection

When you have a child with a compromised health condition, your life changes in more ways than you can imagine. Not only are you aware of the coughs around you... you learn more about how fragile life can be and how one thing can turn your world upside down in a single moment. Kyra's broviac line is truly a life line in every since of the word. The fact that she had a tear in the line with no immune system is dangerous. Kyra requires 20 hours of fluid a day thru her broviac to keep her nurished and hydrated - not to mention the medications running thru this line. If nurishment and hydration were not enough to age mom and dad then we add the fact that bacteria could have gained access due the tear in the line. But that is not enough... if the line is not open, Kyra would need a new line = surgery. Kyra will require long term IV support and we need to preserve her access points, surgery should be avoided at all costs.

Happily we can report, Kyra's line was open and we went home. We went home, feeling at least five years older, sooo tired and ready for our own bed. Kyra was just as happy to be home as she spread all out in her bed, rubbing the sheets!