Overall, Jude describes the hospital stay as, “kind of good, not that good.”
The best parts were:
1. Our nurse for check-in was a nice lady we know from our church.
2. Our 2 pastors came from our church to pray for Jude and visit with us during the surgery.
3. Family came to visit.
4. The surgeon thinks he got out the entire tumor so that it is possible that Jude is cancer-free. Although “time will tell,” we are told.
5. After appeals to our nurse, the charge nurse and the patient care coordinator and using both the social worker and our oncologist’s RN as our mouthpieces for part of the appeals process, they finally permitted me to keep Asher (who is still breastfeeding) in the room with me and Jude. That was one battle I was just never going to give up on and was just shocked that it was a battle.
6. Andy and Levi got a room at the Ronald McDonald House within Children’s Hospital so they were close by.
7. Without us asking for permission, the nurses turned a blind eye and let Levi (who is 3 years too young under the visitor’s policy) to visit Jude.
8. Jude got the XBox running on his own within 1-1/2 hours after waking up from surgery and is the same old Jude.
9. Jude got to watch movies and TV in English.
10. Jude got some great presents.
11. Jude got to eat unlimited popsicles and ice cream.
12. Jude was encouraged to eat salty foods like bacon, french fries, chips and macaroni and cheese since he developed a mild case of Cerebral Salt Wasting Syndrome.
13. Jude and Ivan’s trips to the fridge or “nutrition” room to get all the not-so-nutritious snacks like ice cream, popsicles, pudding, juice boxes etc.
15. Jude and Ivan got in trouble for racing in cars Flinestone’s style up and down the halls of the PICU since there were sick kids who needed their rest. Jude wasn’t one of them!
16. Deloitte sponsored a carnival with face painting, carnival games and prizes, arts and crafts, etc. and an ice cream social that we attended on discharge day.
17. Jude learned how to take medicine in pill form.
18. We learned the tumor’s pathology was Grade II. Although we still need to get that verified by the national expert at Johns Hopkins.
The worst parts were:
1. They did a blood draw to check his blood type 2 hours prior to surgery without anything to make it more comfortable for him (e.g, no nitrous oxide, numbing cream, etc.). That was pure torture for the poor boy.
2. Losing a huge strip of hair and having a 6+ inch incision on his head and a head that is sewn up like a football.
3. Waking him up at 12:30 in the middle of the night to give him an oral medicine that tasted disgusting. He sure made the nurse regret ever disturbing him.
4. Removing the central line that went part of the way to his heart and was sewn into his neck with 2 stitches. Again, pure torture for the poor guy.