Kaidence has been very tired lately and I didn't think she looked very good skin color wise, so on Monday I called the cardiology transplant team. We were a little worried because she suddenly became tired, wouldn't eat, started coughing .... They told me to take her into the pediatrician. I did and whenever she would start coughing she would turn blue and her O2 sats would drop. For those of you that have the O2 at home. When you are done don't get rid of everything. Keep around some tubing or something to (as they say in the PICU) "ward off the evil spirits." Two days before Kaidence needed the O2 again I gave all of her left over supplies to a neighbor. So don't jinx yourselves. We had home health bring back out our big oxygen concentrator and sats monitor. I am glad that we had the oxygen because her alarm was set to go off at 83 and her sats were 57 (NOT good). I woke her up and they bumped up but then we put O2 on her for the rest of the night. We have and echo scheduled for tomorrow and some interviews and filming up at the hospital for the little documentary thing that the American Heart Association is doing on Kaidence next month. Other than that things are about the same. We are slowly working on Kaidence's feeds but seem to have taken a few steps back ever since her last hospital stay 2 weeks ago. Today I awoke to her coughing and then in turn puking. It seems that her nose is runny again and that her cough is back (she did not have it yesterday) but hopefully her energy level will start increasing. Hope everyone is enjoying the crazy weather of spring and that we can all get our houses cleaned today while the weather is blah so that we can go our and play when the weather is AHHHHHHHH! Have a great day and thank you for all of your prayers. They have brought peace into my heart.
16 hours ago