Yesterday on Saturday we were discharged from the hospital finally after four long weeks at the hospital. We were so excited. It took 2-3 hours of packing all of the fun things that our dear friends sent us. It took two luggage carts to take it all to the car. We were in smiles. Finally a few days at home before we would have an appointment to set up radiation treatments.
We drove the 2.5 hours home. We told so few people, wanting just to absorb being home a bit before letting others know. It was beautifully decorated. Alanna loved her room that the young women at our church decorated for her. She loved the hearts on the door from the sister missionaries. She loved seeing her pet fish and feeding them. She loved that the sunflower in her garden plot was just starting to open. She made me hide her Easter Eggs so she could find them. She talked a long time about how she was going to go to Kindergarten on Monday in her new wheelchair to see her teacher and classmates.
I imagined sneaking into church for twenty minutes or so of sacrament meeting just to see people wave and smile at Alanna. Alanna asked me to run to Costco to buy her some crunchy snap peas to eat. Which I happily obliged but I was shocked to see normal people doing normal things. I hadn't done anything normal in weeks. Oh how I look forward to feeling normal again someday!
When I arrived home I remembered to cut off all of our hospital bands. Boy did we cheer! Hallelujah! A dear friend came and dropped off dinner! Oh, a home cooked meal. Thank you Alison! I set the table, we dished out the food and I went to get our little girl to bring her to the table. When I picked her up she was HOT with fever. 102.5 degrees. In panic mode we grabbed what we could and went to the car. Alison, your dinner made it with us. We ate it gratefully in the ER while we waited for instruction.
Sadly and depressingly our instructions were for Alanna to ride an ambulance back to UCLA. The ambulance wouldn't take a parent. They came from a privately owned company and refused passengers. Steve and I sadly followed the ambulance all the way to LA. I was driving and very very tired. I had to roll the window down and sing Disney songs with Steve to stay awake. It was a long depressing drive.
Alanna slept through the ambulance ride peacefully and was greeted by a nurse she recognized and felt safe with when she arrived at 1 am. Today Alanna's fevers keep spiking. Their only idea is that her infection hasn't completely gone away even though her blood work looks good. They have switched her to a different antibiotic and are closely monitoring her. This will most likely delay her radiation treatments until they can get this infection under control.
We were welcomed back by hospital staff in a love/hate kind of way. Alanna had a nurse she really likes today and was calm. Her fevers aren't really bothering her much except for making her tired. She also got a "Little Wishes" gift from the hospital. The hospital gives gifts to children who have been in the hospital for 14 days. Her's arrived just as we were leaving and gladly I had it for her to open today.
Please pray for Alanna, my heart breaks for her. She is so strong and brave. But this isn't fair. We were home for a total of 3 hours. Please pray that our dream of bringing Alanna home will happen someday.
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