Saturday, May 20, 2017

Day 3 May 19

Today was a good day! We learned there is 7 other CF patients on our floor and there are no vacant rooms. The hospital is packed. I do ask that everyone please pray for each individual here, whether they are patients, parents, guardians, friends, family, or nursing staff. They all need our love and prayers. Hospital life is physically and mentally demanding. It is often a helpless time for parents and a scary time for patients. So please take 2 minutes and lift up all this who consider the hospital home.

Today we did a finger prick to test the antibiotics in r's body to ensure the levels are just right. He weighed in at 12.7k. His appetite is very minimal and we are doing a few bolus feeds throughout the day. His cough is getting worse but his fever is staying down. We are still waiting for results from the bronch cultures so we are still doing tobi and ceftaz. Today his picc dressing was already looking rough so we changed that and are hoping it lasts a few more days this time...

R is doing good in the hospital and his spirits are still high. He enjoys talking to the nurses and watching the new movies. Our care here is great and we are blessed with wonderful staff.

Sidenote. They are amazed by his progress with the blended real food diet vs formula. He is the first patient here to do so. Woohoo.

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