Monday, August 20, 2012

Max's Army...

There is a special bond we, as Max's parents, have with Max's doctors.

I've written about our appreciation of them before.

They are such a huge part of our lives, and their care is why Max is still with us today.  Sure, we do the day to day care for Max, but there is something to be said about a child's doctor sitting down for hours on end teaching parents about their child's rare diseases.

We know we are extremely fortunate in our relationship with them.  We do not have a single doctor that follows Max regularly that we are out of step with.  They are all respectful of what we want as a family in regards to Max's care, and we return that respect by giving them the room to tell us we're wrong, or need to go about something another way.

I wouldn't say it's a friendship.  Although, we would gladly have dinner with any of his doctors outside of a clinical visit...and have with several of them.  No, it's more like an army, Max's Army.  We need each other to make things work as they should.  We don't always see eye to eye, but at the end of the day, we all want what is best for Max.

This afternoon, we had a Care Conference.  This is where all of the doctors involved in Max's care sit in a conference room and get the plan of action together to treat, and get him out of here!  We've only had two care conferences before, once for brain surgery, and once when we thought Max would need the trach.

When we walked into the room, and I saw these doctors who have gone to battle with our boy time and time again, I felt proud.  This was his team, here to step up and represent him, and us.

The hierarchy of hospitals always plays a part in the miscommunication in these long hospital stays.  One team feels they need to defer to another team...when in reality, they all need to work together to make the wheels keep turning.

It was good today, for Max's metabolic doctor, who diagnosed a very sick baby Max at age 4 months old to come in smiling at how HUGE Max is.  I hope he feels his own sense of pride that Max is here today because of his stubbornness in treatment.  We talked about treatment going forward, and some things they're working on alongside this hospital stay.  Since he's been here, with a way to get blood, we are able to get lab draws made easily, and have found out some new things about Max as far as his Metabolic disease goes.  Nothing we'll talk about until we understand it completely, but still, interesting stuff.

Then his dietician, who has such an invested interest in his dietary needs.  She's been following him for several years, and most recently helped us get Max on the blended diet, and will help us get back there. At one point in the care conference, she was cut off and shut down by one of the doctors.  We knew her way of treating was the better way for Max, so Steve spoke up and made sure that she was able to have her say.  Once she got out her plan, the whole plan worked...our team works.  Our team knows what is best for Max.

Max's GI is relatively new to the scene, but he knows Max's plumbing pretty well.  And he had a lot of good points about moving forward.  It was great to have him there to say, if Max can't handle his own secretions in his stomach, we've got a bigger issue to deal with.  He knows what's normal for Max, and knows that there is no reason to be draining his stomach all the time.  So, drain off, food and medicines in belly and JTube...score again for Team Max.

And finally, his neurologist couldn't make it to the meeting, but he stopped by on his way home tonight.  We talked about the going home plan, as it tends to always come down to the medicines Max is on, as to when we can go home.  After talking it over with him, it looks like in the next couple of days we will get our walking papers.

He told me that we needed to be home.  They all want us home.  I don't know a single doctor that we've ever encountered that wants Max in the hospital when he's well.  As soon as he's feeling better, all the doctors and nurses want him out of here, so he doesn't get more sick.

Oh the nurses...we've had a couple of difficult ones, not because of their care, but more their comfort level with Max.  But, time and time again this stay, we've been reminded at what amazing nurses work at and run this hospital.  Today, Max had three of his primary nurses "fighting" over who got him.  We appreciate his nurses so much when he's so sick, but we actually love to have the same nurses once he's feeling so much better, so they can see the good work they did.  He pulled through because of their extra care.

It's good to get at the end of these long visits and realize that we've made it through again, and know we'll have Max's Army by our side the next time.  We just hope it's a very long way away, until next time.


Shachi said...

wow - it all sounds exhausting but remarkable - so much to learn for everyone...even for us readers!

Kat said...

Thank you so much for taking precious time away from your son to hopefully help others and to keep those who love him informed of his well being. You are truly an inspiration to us all!!! Praying for Max and his family.