I have not had a great day. I’ve had a cough and a sore throat. I’ve been tired. I’ve been more nauseated this treatment than the previous two and that has extended through today…10 days post-treatment when I am usually feeling better. Was feeling kind of sorry for myself, and then I saw a dear friend’s status update on FB – her little boy is in the hospital (AGAIN) with a blood infection and high fever.
MORNING UPDATE 10/11 :
Sam was admitted to the PICU overnight. He had a rough night but is doing ok this morning…there is sepsis in his line- confirmed by now a 2nd episode of septic shock after getting TPN in that line (releases the ‘bugs’ into his bloodstream and his body responds….must like an FPIES reaction look except for Sam, his FPIES reactions aren’t this quick/severe); and we know it is from the line because the cultures are coming back positive. They are narrowing down what the bug actually is so they can treat it with a much stronger/specific antibiotic. There is a small hope that they will be able to “clean” the infection out of the line but likely he will have to have the line removed. So many emotions as this line was supposed to help him….Please keep the prayers coming.
Little Sam is just a couple of months older than Ella. He has FPIES, like Ella. Only his is much, much more severe.
FPIES is complex and difficult to write about without being long-winded, so I won’t right now.
But because of this intestinal illness, Sam’s body also can’t absorb nutrients like he needs to, and he has been frequently hospitalized. He has three older brothers at home who are also greatly impacted by FPIES.
Please check out Sam’s blog for a glimpse into their family and their FPIES life…just the first three or four posts, and you will see some of what they are dealing with: http://fpiesmudpies.blogspot.com/
Ella has outgrown nearly all of her FPIES symptoms, and in fact, rice is her only “trigger” now – she can safely eat all other foods as far as we know. Sam doesn’t have the same outlook anywhere on the horizon.
Could you specifically pray these things for Sam and his family:
- Healing from the blood infection
- The ability to try/tolerate new foods in the near future
- Guidance for his doctors
- Strength for his mama (and daddy)! 🙂
- Normalcy for his brothers
- HEALING from FPIES for Sam
Feel free to leave Joy a comment here or on her blog to let her know you’re praying for Sam! She doesn’t know I’m writing this post, but I’m going to let her know.