Friday, June 8, 2012

Time For Another Opinion

I have been under considerable stress over the past few weeks.  It began with one of our nurses leaving.  She did maybe up to 16ish hours a week.  We were able to get a replacement in for her, but before the dust had settled, the nurse that does the bulk of the hours (up to 40 a week) decided that we were not consistent enough with our schedule, so was moving on to a new patient that the agency was bringing in.  Despite the fact that our schedule was made to suit her and still cover our needs, it wasn't good enough, so she is pretty well out of the picture now.  That said, now we have to get a nurse to fill in most of our hours.  A nurse who is an LPN oriented this week (Peyton's supposed to have an RN, but this nurse is allegedly approved for complex cases).  I'm not 100% sold on her, but got the impression we should give her a try - perhaps there are no other nurses available at the moment.  Still, I'd prefer to have an RN, particularly if she's going to do most of our hours!  The first nurse who left is actually able to pick up a few hours again, so that's great.  One of our former nurses is also coming back to do a few shifts a week, so that's good too.  All this is good, but this means 4 nurses in and out of here, which isn't ideal, but what can you do.  

I was so excited about getting the one nurse back who had left a few weeks ago, even if it's just for a shift a week.  Also, the nurse who came on board after that one left - I'm really excited about having her here as well.  Both of them go to our church!  Both are really awesome ladies.

Nursing drama aside, today I took Peyton to the orthopedist.  She's had a lot more pain lately.  I know things are hurting her and I know she is getting worse from an orthopedic perspective, but I don't know what to do.  From the moment the doctor entered the room til the moment he left, he was nothing but useless.  Condescending even.  He can't do anything and made no bones about it.  He suggested it's all a neurological issue and we need to get her in to see her neurologist and maybe they can prescribe something to keep her from moving so much.  Huh????  Drugs aside, he didn't even offer to have his office call neuro to see if we could get in sooner than what we're currently scheduled for.  We are having to give her motrin/tylenol every day - sometimes multiple times a day - for pain.  This did not use to be the case.  He wouldn't even offer a prescription for something different for pain.  Nothing.  I was furious and I was in tears by the time he left the room.

By the time we got home, I had already texted Ron to update him and we decided we need to move forward on something we discussed about a month ago.  We have decided it is time to get a second opinion.  Unfortunately this means traveling, which is really not something that we would even consider under any other circumstances right now.  We decided a while back to scope out the best children's hospital within reasonable distance and go there.  As it happens, Boston Children's Hospital is ranked #1 in the country.  You can read about that here:

They are ranked #3 in orthopedics.  Since we're talking about traveling that far, we decided we ought to get second opinions on other issues as well.  I had done some research last month and picked up the phone and called.  I first called the orthopedic clinic.  Peyton now has two appointments on August 13th.  The first is with an orthopedic doctor who specializes in growth.  The second is with one who specializes in upper extremities.  A lot of what we are dealing with is very lax muscles and joints that are bending the wrong way, hip dysplasia, low muscle tone, etc.  I cannot wait to have them take a look at her and see what they can recommend.

We also now have an appointment with the pulmonary clinic on August 14th.  Since respiratory issues are her main issue (outside of simply having whatever conditions she has), we want to have a second opinion - just to see if someone has any ideas.  I don't know if they will or not, but you never know.  By the way, Boston Children's pulmonary clinic is ranked #4 in the country.

Since the orthopedist was just trying to pawn us off on the neurologist, and since her neurological issues are a great source of the mystery that is Peyton, we also have an appointment with a neurologist at Boston Children's.  That department is ranked #1 in the country in case you were wondering.

I would love for genetics to see her too, but we'll leave it at that for now.  We actually are in the process of possibly seeing another genetics clinic here locally - I just haven't firmed anything up on that yet.

We'll start with these three specialties.  I have spoken with another mom whose daughter is a complex case - they take her to a few different children's hospitals for other opinions.  This mom has very high praise for Boston Children's Hospital.  Honestly, every single person I have spoken with at BCH has been nothing but kind and personable and helpful.  I had one woman tell me how impressed she was with me.  So far, I'm extremely impressed with what I've heard from this other mom and what I've experienced via phone (and I've only dealt with support staff so far!).

It's going to be a tough trip!  We haven't traveled with Peyton in almost 2 years since my mom passed away.  It's so difficult to even comprehend what traveling with her would be like right now.  I will say this - just because we are making this trip, it does not open up the possibility of a regular family vacation anytime soon.  If it weren't for the medical "necessity" of this trip, we wouldn't be going anywhere with her.

So, I'm going to ask for prayers for this trip that everything comes together for us to be able to make this trip (there are a lot of pieces of the puzzle which need to come together).  And then prayers for Peyton's health that it remains perfectly stable for the duration of this trip.

I'll be keeping you updated.  Peyton does see the neurologist here before August, but it's not for another 5 weeks.  We'll see what he says about everything.

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