Oh my, has it been a while! We are busy busy back in the Rocky Mountain PICU. Its nice to be surrounded by familiar friendly faces and the beauty that lays outside of these hospital walls. Emma has been doing considerably well. She had a little infection~ abscess to her left cheek near her drain insertion site. Clindamycin is doing the trick (an antibiotic). The issue we are faced with here is emesis. She underwent a GI study revealing that which we have already known~ her nissen (the stomach is wrapped around the esophagus during placement of the g tube to prevent vomiting) is not intact. It hasnt been for a long time, shes got quite the gag reflex. She was having small emesis (vomit) while at Cincinnati Childrens, but, they became much larger and undigested here. At Rocky Mountain~ Pectin was not being added to her feed and she does not have a Farrell bag which allows kids with G tubes to continuously vent (or burp) during feeding. So~ with those two factors, we shall see what happens. I stopped in at work today (if 7 months later I can still call it that) to sign paperwork and arrange for future return. What a feeling of normalcy and what a reminder that God put me in the right place at the right time surrounded by awesome people. On every coast of America and in distant parts of the world people have been joining together in prayer since early July. It may be separately, but its for the same purpose~ for our little Emma. And in this state of Colorado~ here sits proof that prayer works. Ive never asked to physically see a miracle, let alone be part of one. Though, Ive always believed in them in a distant sort of way. But, I think deep down we all would like to see and witness the wonders of the works only God can do. Here is one tiny miracle in a very big way. 5 months ago, my expectations were cloudy. Muffled by not knowing for certain the outcome, but the hope and faith that my little baby Emma would pull through. I remember many times of doubt and the conscious realization that every day may be her last. I dont feel that way anymore. December 7th will be her 5 month birthday. Today, I decided to set a date. I informed her doctors, case manager, home vent company, home health company and all who were involved that Emma would be home by Monday, December 15th. There was a moment of question which quickly turned to focus. Fueled by the determination that baby Emma would not spend any more of her young life living in a hospital, accompanied by the Ill go nuts if Im here one second longer, we decided to take matters into our own hands. Children are not normally discharged with so many things attached. Emma will go home with her Broviac, g tube, trach, drain, vent. We will do weekly blood draws, she will receive IVIG and albumin at home and we will ween her from CPAP mode to trach collar trials. Her withdrawal protocol will remain the same, we will continue to give her Sirolimus/Rapamune, monitor her intake, output, drainage, and we will be running our own little PICU in the privacy of our own little home. In addition to this, PSA, a great home health care company, decided to take on our case. Emma qualifies for 24/7 home nursing care due to her acuity level. Companies will hire parent CNAs but not RNs. After reading a letter which took myself a day to write and her father hours to edit, they decided to take on her case and hire myself as her head RN for 40 hours a week in the home. Without this, she would not be being discharged anytime soon. I think Ive said enough. One miracle, two miracles, three miracles, four.... keep on praying you will see many more. We are blessed~ THANK YOU ALL for the prayers, support, for being wonderful people, for being part of our miracle. We are surrounded by love. Some pictures from a maintenance visit with grandpa (needless to say my cars cleaner than the day I bought it) and baby Emmas first meeting with uncle Bian (who by the way was the trach care master)~ 2Corinthians 5:7 We walk by faith, not by sight.~ Right on.
Posted on: Sat, 06 Dec 2014 06:58:17 +0000
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