Sunday ... all the pieces fell perfectly into place and we were discharged (a day early). It took the signatures of 5 specialists ... and we did it. We got his bandages changed on his wound (looks "Great" according to the surgeon, looks "HORRIBLE" according to the Mom). We got his last dosage of antibiotics. And got out of there.
He asked for hugs from all the nurses on the way out. Needless to say, they did it! (He's a flirt.)
Monday ... My parents offered to drive Manny, Kaley and me up to Shands in Gainesville (quite north of us) to keep the GI appointment with them. (Thus the reason everyone agreed to let us out a day early.)
Long story short, the meeting was a bit discouraging. Back in October 21 when we were released, they said to come back October 31 and we'll have a new game plan and pick up where we left off. Fast forward 4 months. (We were never able to get back in between due to being in the hospital over and over and over.)
I gave them a printed version of the hospitalizations, issues, central lines, etc over the past 4 months since they'd seen us. One doc was completely up on the latest as I've talked to her over the months but the head of the department was only vaguely familiar with the happenings.
After much discussion, the bottom line is ... they have come up with no new ideas yet. The only thing that was really discussed is that he would call the "guru" of Pediatric Mitochondrial issues and see if they come come up with a plan. Well, it's Thursday afternoon as I write this and I've heard nothing from them. Makes me think I know the answer.
The issue: Manny is not able to eat by mouth or tubes as his digestive system has become so compromised that it puts his life in immediate danger to feed him even a few ounces of formula (of any type... trust me, we TRIED that). So they put him on TPN ... a life saver. But it's also damaging his organs at an alarming rate. At this rate, well, let's just say we don't have long before another body part is damaged.
Bottom line: Without immediate divine intervention on a massive scale (and we know He is capable), Manny's issues with food becomes lifethreatening. Without this miracle, the doctors do not believe he can survive long. (No one wants to put a time frame on it and I'm thankful for that.) But they quote to me that TPN was not designed to sustain people for more than a few months. (We know of people who have done it for YEARS but they are the exception and their organs are not affected by it like Manny's are.)
We are still hoping that some Mitochondrial Doctor might be able to solve the mystery of what is wrong and have a viable treatment. But that hope is fading too ... they use the 'needle in a haystack' analogy and say that it could 'take years' ... which we know he doesn't have. And most do not have treatments/cures. So it might be a moot point anyway.
But for today ... Manny is hanging in there. TODAY he is improving with his surgical site. Today he is laughing and talking and learning and growing. I am CHOOSING to focus on this and not the other.
THIS is the day the Lord has made and we WILL rejoice and be glad in it.
My reflection point of the day ... Pick one:
CHOOSE to love someone today who is a pain in your hiney.
Choose to overlook the flaws of the people around you.
Choose to forgive and move on with your life.
Choose to let go of the anger and bitterness that's been built up.
Choose to see the good in the situation in front of you and not the bad stuff.
Choose to be a proactive participator in your life, not watching from the sidelines.
Choose to say one positive thing to the next 5 people you see/talk to.
Choose to be an encourager.
Choose to praise God in the big and small things, including those things you don't like.
Better yet .... why not choose them all?
Life is too short and uncertain to focus on the wrong stuff.