Tuesday, August 25, 2009

Advice for doctors.........

So instead of saying a bunch of bad words, Ill just tell you how the day went.
We get to our urology appointment, and they don't have us in the computer. NICE! The doctor comes to see us anyway, and 3 minutes later we are out of that appointment. The good news everything post op looks great, and he has recovered well.
2 hours until ENT appointment.
We eat, Alex wants to sleep, but cant, gets grumpy, gets very grumpy, we go to ENT. Left ear looks great, right ear has some fluid, doctor says lets wait a year and see what happens, unless he starts having infections and such.
Have five minutes to make it to cardiology.
Wait 20 minutes in waiting room, wait ONE HOUR in the doctors office, I finally step into the hall and say we have been in here for an hour, just as soon as I go back in the nurse and the EKG machine come carting in, we all know that we would still be there waiting if I hadn't asserted myself and gotten things going.
So doctor heart comes in listens to Alex, hears the PDA, and says he needs surgery.
Not immediate, the PDA isn't causing heart issues right now, but PDA's have potential to cause enlarged hearts and infection, so it needs to be done.
He suggests September, I look down at my belly then up at him, so then he says these very words "lets do it around Christmas time", (advice for all doctors) saying lets have surgery around Christmas time isn't something you say in a cheery way, like its some sort of exciting new idea you just came up with. NO I DON'T WANT TO HAVE MY BABIES HEART SURGERY AROUND CHRISTMAS TIME!!!!!!!!!!!!!!!!!!!!!!! He could have said November, or January, but no, he chose to say around Christmas time, like that was a better alternative to September. Not to mention Ill have a baby, just a few months old!

The scary thing is that this cardio appt never would have happened if I hadn't asked our neonatologist, if I wasn't supposed to worry about the PDA either since no one else seemed to be. The fact is, is that we slipped through the medical cracks, and that is the reason I never heard anything after his echo cardiograms that he has had in the past, it wasn't that no one was concerned, its that no one really read them since our echos were outpatient, and we never did see a doctor.
We then left and sat in traffic for over an hour, then began our one hour 45 minute drive home.

I took pictures of Alex being sweet and cute tolerating our long day, but I'm to grumpy and tired to post them. I am overwhelmed with another surgery, and a new baby, and I just need to go to bed.
It was an RTS day.....Really, Tough, S***


Our Journey said...

sorry!! that sounds like an extreme RTS day!! things will get better! So, did he explain the PDA surgery? Is it an open surgery or with a catheter type thing? How big is the PDA? Frankie has an ASD, I'm hoping he never needs it closed!!

Finding Normal said...

Shit. There. I said it.
We slip through the cracks too sometimes. It's very frustrating. Shawn and I had a discussion the other day because we STILL feel like no one is helping us navigate this journey. The specialists are all disjointed, and who knows if we're missing something???

Anyway. Sorry to hear about the surgery. REALLY sorry to hear it could be around Christmas. The good news is the scheduler will call you with a date and you can say December is already booked with family visits and travel, so you must wait until January. If he's waited this long, another month doesn't sound like it'll hurt him. Makes you wonder if that surgeon knows his December is wide open since no one wants those dates? (that's what I thought when they tried to put Add's cranial in Dec!)

Hang in. This too shall pass.

Alicia said...

Oh gosh Jessica, I am so sorry.

What a jerk!! This, as you know, is the second time in our circle of blogging friends that a doc has suggested surgery around Christmas?? What are they thinking?? Would THEY like THEIR kid's Christmases to be interrupted by hospitals and pain??? As you have said before, there is really no good time for surgery but you'd think they could come up with a much better time than Christmas! I would stick to your guns and insist on surgery in January. That is when we had Marissa's kidney surgery and it allowed us to enjoy the holidays as a family.

Hugs to you my friend.

Anxious AF said...

thanks all of you! Your comments are like hugs tonight!

Tena said...

Oh yes, I know those days. Except I say the shit part right out loud. Do it, you'll feel better. Seriously, how compassionate of the dr to toss that little happy in there right in the "happiest time of the year". Brillance.

Karalyn said...

That whole Christmas/surgery thing sucks! I hope you can get that changed.
I just wanted to let you know that my son had surgery for a PDA 3 years ago. The dr. had always heard what she called an innocent murmur. At his kindergarten physical we saw a different dr. who thought it needed further investigation and that is when we found out he would need surgery. He had an Amplatzer (sp?)device placed. We were terrified and shocked to hear it was an outpatient procedure. Afterward we were amazed at how quickly he recovered-I'm talking hours here LOL. I know how scary it can be to send your child off to surgery(and I know you know also) so I just wanted to share my experience. And yeah,I was a little peeved to find out he had been walking around for almost six years with a PDA.
Sending hugs to Alex!

Chris and Emily said...

Oh, I hate that they day went that way. And am so dissapointed that the idea of him not having to have surgery really was a mistake...and Christmas time, really? I really don't understand how so many doctors say things like that...I mean aeren't they people too or do they really all live on some other planet?
I know you must be sooo frustrated and stressed right now. I praying that God some how calms your spirit and that "somehow" it will all work out "perfectly"( isn't even ok that I just used that word?)
I fear constantly that Cohen has slipped through the cracks...but how are we suppose to know? It's so hard to be everything all the time.
YOU are doing a great job...Alex is truly blessed.

Hope you get some rest tonight.

Staci said...

So sorry to hear that Alex will need the surgery. Also sorry to hear that you could/should have known about this sooner! Hopefully this surgery can wait until January. I hope you can get some rest. Take care.

Anonymous said...

You have to be your own medical advocate. Never depend on the medical profession to get it right. YOU have to protect yourself and your family, no one else will do it for you.

The VW's said...

What a yucky day! I'd be grumpy FOR SURE! I hope you got some good rest lastnight and have a much better day today!

I would definitely wait until AFTER Christmas to have this done! He obviously is doing well with the PDA and I would feel confident waiting awhile. Christmas time and having an infant are no time to go through surgery if it's not emergent!

Hang in there Jessica! This too shall pass! I'll be praying! Love and Hugs!!!

Unknown said...

Jess- Hang in there! I know it is very frustrating for you that physicians sometimes (ok most of the time) do not really think about anything past a procedure or a test or something that completely turns your life upside down. Just remember that YOU have the ultimate decision over when Alex should have surgery, since it is not an emergent situation. You have to think about what is best for you and your family - period. What's best for Alex's doctor isn't something you should have to consider. If December isn't a good time for you (it doesn't sound like a good time for ANYONE!), just tell them that you can't do it. You do not have to be pushed into somthing that will stress you and your family out even more. I wish I knew the right thing to say, or exactly what to do. While I'm trying to figure that out, I'll send some *hugs* to hold you over! Love you!

Brandi said...

Hey, I'm the 12th person to comment and I want to say ditto to everyone! Your doctor is a typical doctor, thinking about the procedure, not the person. Doctors think that way, it sucks.

As for slipping through the cracks, what the heck? Mistake on their part again. Tends to make a person not trust the system huh?

Since it's not causing issues right now, YOU and ADAM pick the date and let them know.

I love you friend. Sending you lots of hugs.

Cindy said...

So sorry you had such a bad day. I agree that you tell them when a surgery would work for you. Januarys are usually slow...how about then?

Michelle said...

Just another fine example of your dollars being spent on idiotic people who only consider themselves. Sometimes, I feel like that is all my child is to these "professionals" UGH. I'm sorry Jessica, I'm sorry your boy has to go through yet another surgery. Personally, I would not like the ENT opinion either...hello, a year?? I wish I could give you a big hug. I hope you get some rest and can try to enjoy the soon coming of your new baby.

Michelle said...

Yikes, sounds like you need to go get a good long massage =)

                               Four years, overn5,000 injections of insulin just to stay alive.