In the past year plus of having a child with complex medical needs, I've learned some important lessons.
Quality care depends on a team of good professionals working together. Seek out the best, not just by reputation, but by ability to work with others.
Surround yourself with support - family, friends, professional connections - and accept help, if it's actually helpful.
Be organized. Use whatever system that works for you.
Take notes and get copies of medical records and reports.
Having contact info for all providers that you can easily share makes your life easier and gets care providers working together faster.
Getting your team to communicate with each other effectively can be difficult. As "Captain" you'll often need to be "Team Communication Facilitator" - it can be frustrating, but don't give up!
Trust your gut and speak up.
Ask as many questions as you want. Ask as many people as you want. Ask the same questions over and over again if you want. Don't be satisfied with "fluffy" responses. NEVER accept dismissals or scare tactics.
Find a balance between polite and pushy, but, ultimately, you may have to just be pushy.
If you are upset (and you have every right to be), talk it out with someone you trust before approaching the person you are upset with. Having someone "talk you off the ledge" and help you find the right words to express your concerns is better than being a crazed Mama Bear and attacking.
Pull every string you can find when there's something your child needs.
If one team member is not doing what needs to be done, either coach them or cut them. Keeping them out of loyalty does not get you better results.
Say "Thank you!" Those two words and a smile can go a long way.
The medical professionals may each know a lot about their specialty, but YOU are the expert on your child.
