Sunday, June 12, 2016

Day 5: 6/10

Discharge day, aka Friday!

Today we received the news that we are busting out of here and heading back to Greeneville! Thank you everyone for your prayers, texts, gifts, and food deliveries. We are so thankful to have such wonderful people on our side.

Last night, R suffered from night terrors and his oxygen saturation dropped below 90 a few times. This was very alarming to me but the staff didn't appear overly concerned about the situation. (Looking back on it now(Sunday) should have emphasised my concern about his dropping numbers. Since Monday R's weight has continued to drop. He now sits at 10.00K and was almost 10.8 k a month ago (3lb difference). We believe his lack of appetite is due to the respiratory virus, parainfluenza 3. We hope to see his appetite and thirst return very soon.

We are being sent home on all of our normal meds, treatments, Florajen4Kids, cipro, and tobi. R will take the cipro orally 2x daily for 14 days. The tobramycin will also be 2x daily for 28 days. The Florajen probiotics are being added to aid with the oral antibiotics side effects. We will be adding 1-2 CPT sessions and albuterol as needed. R does really well with the new therapies and medications. He is such a wonderful patient that the staff here doesn't want to see us leave. They have been so wonderful I am so thankful we switched to the Knoxville care center.

So we were discharged and our prescriptions were called in and all was well. Fast forward an hour and a half when we arrive at our local Walgreens. There we are told that the Florajen and the cipro will not be available until late Monday or Tuesday. INITIATE PANIC MODE!! waiting til Monday or Tuesday would mean missing at least 6 doses, and that is not okay. So the phone calls began. Calling every pharmacy in search of this medication. Each and every call yielded disappointment. Next i called our wonderful nurse coordinator. She always knows what to do to fix any situation and ease my mind. She made a few phone calls and got the cipro located, praise the Lord for placing her in our corner. So once the meds were found we headed their way, back to Knoxville.

3 hours, chick-fil-a, and a venti starbucks mocha later we were home. We quickly unloaded and began medications and treatments. Shew, what a day! I am so thankful that every think worked out and we had the ability to go and do what was best for R. He was fantastic all day and didn't mind the long car ride. He truly is one amazing little human! R is a warrior against Cystic Fibrosis and I am thankful to be a part of his army.

This was a great day full of wonderful people, safe travels, and a medical scavenger hunt. I am so blessed to have days like today where in the storm the sun still shines. I feel Gods love driving down the interstate, I feel his peace when signing discharge papers, and I feel his power when I give R his treatments and can witness them working. My cup runneth over and I sit here in tears in awe of my own life.

Thank you Lord for your journey given to me.

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