We had every intent of updating this page more often throughout the week, but, as you can imagine, having a little one in the hospital takes up all your time and we are all quite tired. Kennedy is doing well overall, and her team has been pleased with the progress she continues to make. Feel free to continue reading below if you would like more details about our week.

 

Kennedy was moved from the ICU to a regular hospital room on Monday afternoon. This was day 3 post op and the earliest it could have happened (average is day 5). She transitioned well and we FINALLY got to hold her again. Those cuddles are everything, especially when your baby is not feeling great. She perked up a bit Monday night and hugged our night nurse – she is such a sweet girl!

 

Tuesday the surgeon came to check in and noticed her two drains were coming out. He was not overly concerned since she was progressing well. He asked her team to give her a bump of her pain meds before he removed the tubes/drains and stitches. Well, K likes to keep us all on her toes. She was crawling and playing in the hospital bed while we waited for the pain meds to kick in and for the surgeon to return…in this period of time the drains managed to fall out on their own. Needless to say it freaked us out and we had the nurses come in pretty quickly to make sure things were okay. She didn’t cry or complain at all so we’re assuming it was pretty painless for her. The surgeon came back and joked that “she did his job for him.” No more drains = a little easier to move around with Kennedy. Right now her dressing has to be changed and cleaned twice a day to ensure the two holes from the drains are healing well and not infected.

 

Thursday we were put on lockdown in our room. Kennedy was still having diarrhea and her white blood count came back elevated. Her team was not overly concerned because she did not have a fever and was not showing any other physical symptoms of something being wrong. They told us that steroids can cause a high WBC, but obviously needed to rule out other causes given her health condition.  So, Thursday became a very busy day of lots of tests for K…urine sample, stool sample, bloodwork, culture from IV, chest x-ray, and ultrasound. Thankfully everything came back looking okay. Her WBC was at the high end of normal on Friday and was totally normal by Saturday morning. 

 

We thought Friday would be uneventful since her blood work looked good and we didn’t have much on the agenda. Note to self…things are never that uneventful when you are in the hospital with a toddler lol. We took Kennedy on a  walk and noticed she had a dirty diaper when we got back to our room. No big deal, right? We’ve changed lots of diapers, and plenty in the hospital to know how to hang. Joke was on us. The poop was EVERYWHERE. It was all up her belly….on her dressing (covering the holes from the drains), on her large incision (they don’t cover it at all, it just has glue on it), and on the chest IV. Needless to say we hit the call button REAL fast. Our nurse and nursing assistant helped us get her all cleaned up but boy was it a process. She pretty much got a sponge bath plus new dressings and new ends on the IV. The nurse said it was an “official code brown.”

 

Sleeping at night was pretty rough earlier in the week, but is slowly improving. Kennedy has actually slept decently in the hospital on previous stays, but all of the meds are making it a little more difficult right now as her body adjusts. The team said that steroids in particular can cause irritability and insomnia, so we are doing what we can to help her relax and be comfortable. She also has vital checks and meds overnight, which makes continuous rest challenging but these things are necessary. 

 

It continues to be obvious to us that God has given Kennedy a fierce and resilient spirit who brings joy to everyone around her. We are so thankful to be her parents and know God has big plans for her. Thank you so much for all of the positive thoughts and prayers. We are so grateful for them. And thank you for the donations to COTA for Kennedy….COTA funds are what are allowing both Nick and I to be with Kennedy this entire time without worrying about other things. 

 

Kennedy’s team thinks she will be able to go home early next week. There are still a few things to iron out before then. We will do our best to continue to provide updates over the next few days.