Friday, May 20, 2011


I know I am breaking my Monday rule, but I can't believe what has happened today.  I am totally frustrated.  It seems like so many things can fall through the cracks in the medical world if you are not on top of it every single second.  So here's what going on: Macy needs to see a Pediatric Surgeon to look into getting a stomach feeding tube put in.  A referral was made and I was awaiting an appointment call.  Meanwhile, she was supposed to get some NG tubes from a medical supply place so we can use those if needed, and she was supposed to see a feeding therapist to work on getting her to eat.  2 weeks ago she had her evaluation for feeding therapy.  I was told she needed to go 2 times a week so we set up all her appointments for the month of May.  Before her 1st appt. (not last Monday but the Monday before) they called to cancel all of her appointments because her therapist went on Maternity Leave early and they said they didn't have anyone to take on her patients yet.  Still no word......that is frustration #1.  

I received a call last night from an automated line saying Macy had an appointment with a Ped. Surgeon Monday.  I had to call today because I never spoke to anyone so I didn't who it was with or where their location was.  Much to my surprise they said they do not participate with our Insurance Company so we would have to pay for her office visit and the surgery out of pocket.......I don't think I canceled the appointment.....frustration #2.

Since her feeding therapy has been canceled until they find someone, and there is no Ped. Surgeon she is going to be seeing any time soon I figured we better check on those NG tubes.  I called the place and surprise surprise....they don't have anything on record of her prescription for the NG tubes..........frustration #3.

UGH!  So I called insurance and they gave me 1 Ped. Surgeon from Kalamazoo out of Bronson that is in network.  I relayed that to Macy's Pedi's office, and since I had insurance on the phone I asked how the pre-authorization was coming for her much needed genetic testing.  They have not even received anything from the genetic's office requesting a pre-auth. yet.......frustration #4.
The genetic counselor that is supposed to be doing it only works Mondays & Wednesdays so I will have to call her Monday and find out what is going on.  So basically we have no feeding therapy, no NG tubes, and no appointment to see a Ped. surgeon to discuss getting a stomach tube.  It is so important that Macy atleast stays hydrated because she has kidney issues.  I am really scared if this is what the future has to hold with Macy's medical care.  I must add though that Macy's Pedi is pretty great.  She really cares about Macy, and is good at staying on top of all of Macy's appointments and referrals, etc.  I just hope that something goes our way soon.

On a good note: Macy's hand surgeon called and we are meeting with him in about a week and a half.  He wants to start talking about when we are doing Macy's hand surgeries.  I am hoping it will be sooner than later.  It is so sad to see how hard she tries to pick things up (especially small things) and it keeps falling out of her hand because she doesn't have a thumb that works.  But on the flip side (weirdly enough) I am going to be kinda sad to see her little "floppy" thumb go.  It is a part of her.....but it is more important to have a fully functioning hand.  I will go more into detail on Macy's hand surgery later.

I hope everyone has a great weekend!  Adam is home from New York now so I am excited to get a full night's sleep tonight!

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