Straw that broke the Camel's back!

Lilly had a very bad day on Friday. When I arrived at the hospital early Friday morning I noticed her ventilator tube was very loose and we could hear a very loud air leak. The doctor wasn’t concerned since we were getting ready to take the tube out. I was so excited she seemed to be handling the weaning process and with the air leak it was a positive sign. At 3:20pm the respitory therapist came in to turn the ventilator down again. Before she did this she suctioned Lilly’s lungs. This caused Lilly to throw a temper tantrum. While she is crying the therapist turned down her ventilator methods. This was too much for Lilly and I watched her turn blue before my eyes. Her monitors started to go off. They nurse and doctor came in and started “bagging her” which means disconnect the ventilator connections and started hand pumping oxygen into Lilly. After a few minutes she was pink and her numbers were good on the monitor. The doctor and I talked afterwards. The doctor felt that Lilly could not handle breathing on her own. The doctor said she would talk to the heart surgeon but felt we need to go ahead with the tracheotomy. I stayed longer than usual. Every time I thought about leaving I didn’t feel right and decided to stay a little longer.

Towards evening time Grammy and Grampy came to visit Lilly. As we sat and visited both Grammy and I could her Lilly make a very faint moan. About 8:30 Grammy and Grampy left and Grandma and Grandpa came in. Just as Grandma and Grandpa sat down the nurse came in and started to suction the bubbles out of Lilly’s nose and mouth. Lilly started to cry and drop her heart rate again. The nurse worked with her for a few seconds and then started asking for help from other staff members. The doctor came in and called a “code blue”. Staff members came running in as Grandpa rushed Grandma and me out. It was hard standing outside my baby’s room and watching them begin CPR on Lilly. Lilly was limp and blue. They inserted a new ventilator tube and were able to get Lilly oxygen. After several minutes her numbers on the monitors started to look better. After the entire event the doctor and I once again talked… Lilly’s first ventilator tube had come loose and was not positioned low enough. It had worked its self up her throat. They inserted a new ventilator tube with a cuff so it cannot work its self loose again. This event showed us that Lilly is not able to be weaned from the ventilator. We will more than likely schedule a tracheotomy surgery next week. Maybe with a tracheotomy Lilly will be able to start on the road of recovery and coming home.

Lilly is still struggling. She had to be placed on a cooling blanket to help prevent the blood rushing to her brain and causing brain damage. Lilly continues to drop her oxygen level every now and then but the nurse is watching her very closely. All of Lilly’s labs, ultrasounds, xrays, and echo appear to be ok after the major event.

This event reconfirmed how fragile Lilly is and how important it is to take the simple moments and treasure them. Thank you to our entire family for their patients, love, and prayers during that stressful event. Thank you to the Jensen and Mayer family for coming to Josh’s rescue so he could come to the hospital. Thank you Mom and Dad for comforting and reassuring me during the entire event. Thank you Josh for coming to the hospital and comforting me.

Thank you Heavenly Father for giving us another day with our sweet Lilly.