Friday, June 7, 2013

GI appointment in DC

Yesterday was Harlie's GI appointment in DC.  We scheduled this months ago.  But despite having plenty of advanced notice, it was still a crazy morning, with last minute arrangements being made for the boys.  Cooper is home all day.  And he has swimming lessons in the middle of the day.  And then Murphy has swim team practice in the afternoons, after he gets home from school.  The logistical issues were car seats, transportation to and from, care in the morning, care in the afternoon.  Arrangements made in advance changed due to circumstances out of my control.  No one person could do it all.  So, I had to piece it all together using several different people.  It was crazy.  And I hate logistics.  Thank you so much to my Mom, Bethany and Kayla!  Life savers!

Anyway, the point of the appointment was to follow-up on the bleeding incident that happened back in February.

To recap quickly, Harlie had some (a lot, rather) bleeding during a bowel movement, which lead me to take her to the ER.  The GI doc that was attending that night, did not come to see her, but admitted her and ordered a bowel prep (clean out) so he could scope her in the morning.  He came by in the morning for about two minutes.  I never had a conversation with him.  Never.

In fact, one memory stands out in my mind... as soon as he got to her bedside, the first thing he did was turn to her nurse and ask why Harlie was there.  Meaning, why was she in the step down unit vs. on the floor (he sounded annoyed).  I remember thinking, um, hello?  I'm over here.  Hi, to you, too.  And then I thought, why does he care where she is?  She's here because of her trach, but whatever. Was the unit she was in further from where he normally travels?  Is it not a place he likes to go?  Is it more expensive than the floor?  I don't know.  I just remember it annoying me that that was his first concern.

He left and never returned.  All communication was through various residents.  I would ask them a question(s) and then they would page him.  He would call back, answer the question(s) and then they would come tell me what he said.  It was awful.  Way too much room for error.  And as you can imagine, his answer might lead me to ask another question, which would start the whole process over again.  And to make it even worse, the resident I spoke to wouldn't return, but a new one would come into the mix.  Because I never got to have a conversation with him, I never felt confident in his diagnosis.  And there was no follow-up.  And, there was no scope.

I really can't say enough horrible things about that stay and the treatment (or lack thereof) we received.  I will never see that doctor again.  I remember one doctor coming to talk to me during the stay and he said that Dr. G is a good doctor.  Well, he might be knowledgeable.  But, if he doesn't want to talk to a parent who is willing to listen and learn, then he sucks.  Period.

So, I came to the conclusion that if we are ever in an emergency and it's GI related, I can NOT take her to the only facility that I'm comfortable with here in town.  With this particular doctor there, I will never know if he'll be the one "attending."  Which means I have to drive her to DC (two hours away with no traffic).  Which means I need to have her be seen by a GI doc there so they are familiar with her.

That appointment was yesterday.  And it was SO worth the wait and the drive!  Our appointment was at 1:30 and we left at 3pm.  It took eight hours of my time to have that appointment (traffic coming home was horrible).

Dr. K took the time to sit down and explain everything to me.  He also had great bedside manner with Harlie.  He spoke directly to her and he explained stuff to her during the exam.  After we went over her history and he examined her, they took an x-ray of her belly.

Then he returned and explained more stuff to me.  Then he made some changes to her regimen, which totally make sense.  I left feeling heard, educated, not alone and with a new plan.  I left happy.

I may not be the smartest person, but if you take the time to explain it to me, I will listen and I will learn.

With the past hospital stay, it took WAY more time to go back and forth all day (which resulted in frustration and confusion) than it would have taken for him to just sit down and talk to me. The least he could have done was talk to me on the phone.

Anyway, I am much happier now.  And I think Harlie will be happier, too.  She complains about her stomach hurting her every day.  Hopefully, with this new plan, she will be pain free.

Oh, I forgot to tell you that on the way up to DC, I had to pull over to suction Harlie.  I HATE doing that.  I pushed it as far as I could, but she sounded horrible, couldn't clear it on her own and there was no exit in sight.  So, I looked for the widest shoulder I could find and pulled over on 95.  I think that is so dangerous.  But, I didn't feel like I had a choice.  After I suctioned her, I ran to get back in the car.  When I saw a small break in traffic I ran to jump in as fast as I could.  And since I didn't want to open the door all the way, I tried to squeeze in really fast.  And I pulled a back muscle doing it.  Crap.

I tried really hard to take it easy after that.  So, hopefully it didn't tighten up too much after that.  We'll see.  Well, that's it for now.  

Christy xo


Susan said...

I'm so glad that the appointment went well. I hope this means good things for Harlie, it sounds promising.

What a bummer about you back but at least you didn't get flattened by a car, right?! Way to focus on the positive huh? Ha ha. Seriously, I hope it goes away quickly. You can't afford to be injured. I HATE having to suction on the road. That is the worst thing about that long drive. I kind of become inevitable.

Looking forward to drinks in October. XOXO.

Betsy said...

I would totally write a letter to the hospital. It might not change anything, but at least they would be aware of the problem with that doctor. Way to go about being proactive though. Hopefully this new plan helps.