Well that didn't go as planned...

I used to love going back to school as a kid. Going back to school shopping at the flea market with my mother and Nana getting my share of leggings and of course My bright white Keds for good measure. Wearing my fall colored and way too warm outfit on the first day of school even though it was 89degrees. But it changed when I had Philip. September is when I heard the words Biliary Atresia the first time and when Philip had his first surgery. Those feelings from those moments swiftly changed my perception of September. Before I got to know more about the disease I didn't think Philip would be starting school with his peers. As I read about it more I readied myself for developmental and milestone delays that come with malnutrition and other issues that come along from Liver disease. But he surprised us at every turn and grew and developed and hit every milestone. 3 years later and after the crazy journey we've been on I started feeling excited again about Back to School season. I did my supply shopping early for the kids, but there's always that one item that gets you. Before you know it, It's the first week of September and all the stores are plucked clean of school supplies. I mean, Good Luck if you dropped the ball and didn't get the Paw Patrol lunch box your kid saw at the beginning of the summer as you said to yourself, I have plenty of time to get it. Now you've been to every store you can think of imaginable that would carry said lunch box, along with every other slacker mom only to find 500 of the OTHER Paw Patrol lunch box that makes your kid lose their shit when you suggest it as an alternative. How dare you! You pick out the perfect outfits for your boys, Your Facebook feed starts to be filled with First Day of School pictures and you can't wait to take yours. You plan for you and your husband to drop off and pick up your son for his first day of kindergarten and go to orientation for your other son going to Nursery school for the first time. You don't feel as nervous as other moms for your kindergartener. He's strong and adaptable, he'll get through it just fine. 

The one in Nursery is another story. He's been through hell and back. He's really never been in the care of someone other than family. And now, not only do I have to entrust him to his teachers, I have to entrust him to all the parents of the children in the class and now that I think of it all the parents in the community for that matter. I pray they keep their kids home when they are sick, pray they taught them to sneeze in their elbow, cover their mouth when they cough, and clean their hands often. I deeply pray they have vaccinated their children against so many illnesses that can cause real problems for an immune compromised child like Philip. Yes most of those illnesses were once "common" childhood illnesses but "common" is the important word. My child's health isn't "common" and these diseases can spell disaster in an immunocompromised person. Their bodies can not fight as well and rare complications may be more of a  reality than not. We rely on herd immunity. It's a very real thing my child depends on. Then the morning comes

and your little guy wakes up with a fever. You go solo to drop your other son off at kindergarten, and watch the other parents head into nursery orientation without you and your son. And realize he will have to go it alone for his first day at school now. You bring your sick son to the hospital to be checked out where they keep him overnight for observation, and you miss getting to pick your other son up from his first day at kindergarten. I am still so angry with Biliary Atresia. We've had to miss countless things due to this disease. I still hear of kids dying from this disease either waiting for a transplant or complications from transplant. Transplant has been an indescribable blessing that has given Philip a new better life, but is by no means a real "cure" for Biliary Atresia. It comes with its own demons as well. The virus he has really kicked his butt because he is immunocompromised. It's really just a normal cold virus but he was definitely not himself earlier. Fever, shaking, whimpering, aching all over. His coagulation numbers increased meaning it takes a little longer for him to clot. They had to give him a Vitamin K shot to help. We think maybe the stress of the virus caused that. His heart rate was fast and blood pressure low. He slept most of the day. They have him on IV antibiotics just in case. He is finally feeling better now. And hopefully we get to go home tomorrow.  This is definitely not how I saw this day going.