My mom (Like most moms) taught me that familiar adage: if you can't say something nice, better to say nothing at all.
So I've been needing to say something but couldn't figure out the nice way to say it. Here goes my attempt.
In the past 3 years with Manny, I have built a team of doctors. We are all pretty much on the same page most of the time. A true partnership. It's working. I trust their judgment and they trust mine. I even have 2 that put in their orders at the hospital "PRM" which stands for "Per Mom"! :)
There is one exception to this happy little team. And I've tried several different alternatives but still haven't found a working solution. And it's not a little area, it's, in fact, the thing we need most help on.
It's become obvious to me (and pretty much all the doctors on the team) that I need another specialist in this area. So the search started. I did lots of research and found this place. For anonimity, I will call it "AP". My doctor called over to AP, sent the records, I sent records, CMS sent records. They agreed to see us and to get us in quickly. I spent hours and hours organizing my files and writing the historical perspective of how we arrrived to this point and what our current needs/concerns are. I felt ready for this appointment.
As we left, Dan and I prayed for God to make it clear if this was the right place to help us or not.
Manny, Kaley and I drove just under 2 hours (traffic) and happily got to the room. They checked us in, did the triage part (blood pressure, weight, temp) and put us in a room to wait for the doctor who should see us "any minute now". As time drug on ... I got a sinking feeling. I even wrote a Facebook status update for people to pray as I got a horribly uneasy feeling come over me.
An office manager walked in abruptly and demanded I say what I was there for, what I expected from them, etc. I calmly explained that I felt he was getting "substandard care" and that I wanted him to be seen there. I said that I would love for his care to be transferred to them if they felt they could help us.
Eventually, that office manager and another business lady came in and asked for my records which I happily handed over. They started saying things that made me know they were hesitant to see us at all. They said that the doctor wouldn't be able to give a second opinion of such a complex child in such a short time. I explained that I felt this day would be a "meet and greet" and it would take time to establish the long term relationship. I had time.
They took my records to the doctor they said. Less than 3 minutes later, they were back and said the doctor had reviewed my files. (Bull, I had a 5 inch stack!) They said, "The doctor doesn't feel it would be in the child's best interest to be seen so far from home. He doesn't want to take on such a medically complex child." And with that they ushered me out of the room.
I didn't get to see one medical person!
I left in shock. I barely made it to the car before I burst into tears. I was angry and frustrated and sad all at once.
I started making phone calls.
Clearly, this was an answer to prayer! It was a CLEAR, "NOOOO!" So for that I'm thankful. But now I'm still without the most important specialist I have. Manny should be seen by this type of doctor at least once a month. We haven't seen one since November. And he's not medically stable in this area. I don't know how long we have until he crashes. So I got scared.
My pediatrician was also quite upset. She had arranged this meeting. She demanded to talk to the Doctor directly. And sure enough, she couldn't get him to budge. What a ridiculous situation! I felt like this ... we were in a car wreck and my arm was falling off and spurting with blood, I went to the doctor and he basically said, "We don't see patients here who need help! Go somewhere else."
Now, as the result of this meeting gone wrong, a few things came out of this. 1)Don't go to AP.
2) the Pediatrician and several other specialists are now on the ball and trying to get us help. (Before we needed the help but noone knew it and now lots of people are on board with helping us locate the right specialist. So that's HUGE.
As I write this, it's Sunday night, Feb 17 and we still don't have a new specialist. Well, technically I have an appointment with a new doctor. But the appointment is more than 2 months away and that won't work. And we aren't positive they'll take on a complex case like Manny either. So ... monday morning, the records will all be faxed over from the various doctors. Our pediatrician will call and talk to the doctor directly asking if he will take this case and if they can get him in sooner.
Can't wait to report we got a new specialist and that he/she listens to us. I will shout it from the roof tops when he starts to get the right care he needs in this area. Like I said, the REST of the things are under control and doing relatively well. The rest of his systems are relatively stable.
Pulmonology ... now that we've stopped feeding him via his tube and he is only getting the TPN feeds, his lungs sound clear. He's not needing oxygen. His pulse ox is 98-100 every night. No complaints in this area.
Cardiology ... he has an innocent murmur but it's stable. His latest Holter monitor showed nothing of concern. His heart rate is pretty decent, especially for him. While awake it's about 100-120. While sleeping it's about 85-100. He has periodic times where it dips too low or jumps too high but relatively no concerns.
Neurology ... nothing new was happening on this front for quite a while. Recently, our current Neurologist referred us to another neuro in Orlando. Our appointment is for Mid April. And then just last week, I got a message out of the clear blue from our usual Neuro that he was researching and was wondering if Manny has MNGIE? Now this is a diagnosis I have stumbled on over and over in researching. He has most of the symtoms for it so it's always possible. It stands for Mitochondrial NeuroGastroIntestinal Encephalopathy. I never pursued this because as you research MNGIE, one of the differential diagnoses to consider/rule out is Merosin Deficient Congenital Muscular Dystrophy (which Manny has via the muscle biopsy). But it's still been in the back of my head all this time.
Besides, the muscle biopsy shows a secondary nonspecific deficiency. Says it right on the biopsy report. And no one has ever pulled at that thread. Not sure why. His Merosin diagnosis shouldn't come with the GI complications that he has! And this MNGIE diagnosis would account for all of it. The problem is... it's a very expensive test and our insurance won't pay for it. There are secondary tests that point to it without actually proving it. Those might be helpful and I want to pursue those. They are simple blood tests and not super costly to run.
Why does it matter? Currently, we have a mystery ... a primary condition that should not cause any GI complications. But his GI system is out of control. But the one test we had done (motility in Boston) showed a "basically normal" GI tract. So we know it's a brain/GI thing. Several GI doctors think that feeding shouldn't be a problem so they push it. But we all know it IS a problem so I have to put my foot down. I would LOVE LOVE to have documentation to prove I am right and that they should not push feeds on him that he cannot tolerate. Without it, it's just my word for it basically. I want more than that. I also would love to know the diagnosis because it might change a bit of his treatment plan.
Vascular Access ... That's his central line (broviac) and we have just hit the one year mark for no central line infections. That's HUGE, especially considering his last line was in only 3 weeks before he was in the hospital with the line infection that went so horribly wrong and he barely survived. We have done a lot of changes to get this system working but all those things are coming together to help reduce those line infections.
And those are the basic systems that are working well.