October 14, 2008

Abandon Ship?

This subject has come up since day one, when the pediatrician sent us into Boston's Massachusetts General Hospital, we've been asked a million times since that day..."why not Joslin, aren't they the best"? My response is always the same "we went where they told us".

Sounds lame, but we were newbies in the world of type 1 diabetes, and being led on a medical leash was actually a welcome thing in a life that felt like it was spiraling out of control at that particular time 3 short years ago. MGH has been good to us. They taught us a lot. Got us through the "boot camp" phase of parenting and clinical care of a newly diagnosed type 1 child. We love the staff there, they are always available to call you back if there's a problem, and we are incredibly blessed and lucky in geography to be a stone's throw from some of the best medical facilities in the entire country. (wait for the big "but")...

BUT, It's an adjustment when the doctor we've been working with, and getting to know is suddenly gone. Being a teaching program, Noah's on his 4th doctor in 3 years. This past Friday, it happened again. When Noah's name was called, it was by yet another "new" doctor. Introductions and small talk were made as we snaked through the maze of hallways on our way to the exam room. Jon, Noah and I took a collective deep breath and entered .

She was nice enough, I'll give her that. But zero bedside manner, and to me- especially when the doctor is working with children- is a huge problem. As she rifled through tons of paperwork, looking for the one with Noah's pump history printed out on it, I could feel Jon tense up as he sat beside me. She positively grilled us, which is fine- we got a weird feeling from the manner with which it was done. Later, over lunch Jon and I would discuss how we felt like we were in trouble, sitting in the Principal's office , afraid to say the wrong thing that would surely result in detention.

I dunno, it just felt bad and uncomfortable. And they didn't DO anything. I feel like when we speak about certain issues or concerns, there's no feedback. It's frustrating because even though we've been in this life for three years,we know there's always something new to learn. That being said, don't you think some new information, or helpful advice would be offered up from time to time? yeah, I thought so too, but it doesn't happen there. It's situations like Friday, and the switching of doctors over the years that have us wondering if a change from MGH to Joslin might do us some good.

I've always been the kind of person that hates to rock the boat, I don't ever want to offend anyone, but this is my kid's health- heck, his LIFE, at stake here. Why not expect the best? Why not leave no diabetes stone unturned? As parents, I feel we shouldn't allow ourselves to get complacent. We're going to get the wheels in motion for the long overdue switch to Joslin. I'd welcome any advice on what to expect from those of you who have had to break ties with a doctor, or switched from one hospital to another.

On a side note, we had a really great time in Boston after the appointment was over. We did the Boston Duck Tours. It's one of those touristy things you have to do at least once. It was the perfect day for it, and it was educational and fun. Noah even got to steer the duck boat!

5 comments:

mel said...

I went to Joslin as a child and it broke my heart when my father's insurance stopped covering my doctor there-Lori Laffel (She's head of pediatrics there now, so I don't know if she is still taking patients). I am now back at Joslin after quite a few years away because of insurance and such. I think it's better to deal with doctors that have a specialty in diabetes and really truly understand all the emotional baggage that comes with it. Goodluck!

Penny said...

Don't worry about rocking the boat. Riley was diagnosed in October. We had his follow up in December. At that visit I mentioned the pump and the doctor would not even discuss the possibility with us. I immediatly asked to be refered somewhere else.

The next day I got a phone call from one of his PAs with a few doctor's names and numbers. There was no hard feelings at all. They were very nice.

And, we found the endo we've been seeing ever since. We saw her that December and in March Riley was on the pump. She's the only doc in her practice. I have her home, cell, and beeper number. I love, love, love her and am so glad that I asked for a referal somewhere else.

Colleen said...

Rock the boat! Like you, I think kids need some consistency - and I can't imagine having to go through your "history" 4 times in 3 years. If you and Jon feel uncomfortable, I imagine Noah does also. Plus, you would be teaching him how to be "in control" of his own body and his own diabetes.
We still need to figure out a lunch date with Shannon!

Major Bedhead said...

We switched from UMass/Worcester to Joslin when O was 4.5 years old. Her original endo, whom I loved, left UMass for CHOP in Philly and I hated his replacement. At the time, I just called Joslin and got whoever they gave me to, which turned out to be Dr. Ricker. She's been fantastic - she was Kerri's endo, too. I can't recommend her enough.

Bernard said...

Lea

You do what's right for all of you. Don't worry about the endo. I can recommend a great endo (IMO) at St. Joseph's hospital in Nashua, NH. But I don't know how close that is for you.