This is my first full day away from Jude and back at work. I checked in with Charlotte earlier and she said she had given him some Motrin but that he was doing well. A respiratory therapist from Cook's Home Health stopped by my office to drop off a new pulse ox machine. It is pre-set to Jude's specific stats and will alarm at night if something goes wrong. The nurses will also be able to monitor him during the day.
This is the third time we have left the hospital and I have heard from a doctor or nurse, "I wasn't sure you guys were going home because he was one sick little boy". They don't say that in a negative fashion even though it sounds that way. When they say it I believe it's positive and a reflection on the fight Jude has in him. This was a battle and just like the C Diff, and like the empyema Jude made it through.
I think Jude can teach us all a lot of lessons.
1. When a little boy is in life threatening danger you drop your personal issues and get up there to see him because it just may be the last time you do. Don't look back on your life with regret because it's just so short.
2. Jude is his own person. He is not defined by his illness or his disabilities. He communicates in his own form or fashion and he knows what he loves and who makes him feel comfortable. So people shouldn't look through him or over look him. It meant so much when the nurses would walk up and explain what they were doing before they performed an act. Jude would look at them with interest and acceptance.
3. Seizure medications although harmful are very beneficial. Jude has been on them for so long we forgot how horrible those demons look like. When they rear their head there is no mistaking the fact you need the medication.
4. Mom's and dad's are their child's ultimate medical advocate. SPEAK up and don't be afraid to! Jude's IV line was infiltrated with vancomyson and it's only because I spoke up that they caught it.
5. Paramedics are nice!
6. Parent of ill children need help and I plan on helping them. I think having pizza delivered to the wing of a hospital once a month would be beneficial and something Emily's charity can take on. So if you are looking to teach your kids about helping others contact the local child life department. See if you can drop barbecue off or pizza. Let them know it's for a specific floor or tell them to pick one.
7. A good doctor is honest and forthcoming. You can ask them anything even the question of cannabis oil and can get an honest answer despite what the government thinks.
8. Good friends and family are indispensable in the midst of a crisis.
9. Holding your child after they are hooked up to an IV for days on end is an amazing feeling.
10. It's important to find the positive in every situation. While in the hospital if the bath tub was to small, or the bed, or it was past café house we found a reason to be thankful because Jude was in the situation he was. At least we had a bed, at least we had running water, and at least there was a vending machine :)
Thankful Jude is home. Thankful Emily is safe. Thankful well just thankful!