Hospitals in Orlando and near DL also.

[3kids4me]

We had an emergency with my daugter while in Orlando and an ambulance took her and my husband to Celebration Hospital. Now we had heard this hospital was "state of the art", but they had never seen a PICC line in a child before and not only didn't know how to replace it (it had cracked) but didn't believe us when we told them that if we unclamped it she could bleed to death. We finally jumped an early flight home and she had her line replace the following afternoon, but that was after spending half the night in an overcrowded emergency room with a really unknowledgable staff.

Anyway, we can't ever have the same thing happen to us again, so I'm seeking help in identifying Children's Hospitals near DL (our next trip is out there in February) and also in Orlando for our next trip. Has anyone with an ill child had experience at any facilities in either area? Just because a hospital may know how to treat an adult heart attack doesn't mean they know a thing about how to deal with central lines, especially in children.

Thanks so much in advance!

 

[tmfranlk]

Children's Hospital of Orange County (CHOC) is not very far from DL. CHOC is probably about 5 miles from DL. I've never been to this hospital myself, but I have heard good things about it. If you want to check them out a little, their website is www.choc.org.

 

[mco-missy]

Orlando has a very good chilren's hospital- Arnold Palmer Hospital for Women and Children. I believe it is part of Orlando Regional Medical Center. Sorry about your problems while you were here in Central Florida.

 

[BounceyOne]

I second the Arnold Palmer hosp. I had my son there in 1990. The staff was excellent and the environment was clean and child friendly.

 

[RNMOM]

May I suggest you speak with your daughter's doctor about this? He has access to directories of physicians nationwide and can give you the names of a doctor or two to call even after hours. He may even want to give you an abbreviated copy of some of her records for you to have in an emergency. This way you would be prepared. He could line up a doctor and hospital and give a heads up to the office as a courtesy, if you like.

That way you are all lined up and would not be at the mercy of ED staff. They do a good job at what they do but there are so many different specialties in medicine, I am sure I don't have to tell you all that.

 

[SueM in MN]

I agree totally with RNMOM.
Your doctor (or someone at your hospital at home) would be the best resource for a referral. Did I read right, are you going to DL and WDW?

PICC lines are not that common in some parts of the US, so a hospital might not have experince with PICCs. But even if they had never seen one before, it's still a central line going into the vascular system, so certain things always apply (like, if there is nothing to close it off it, it will bleed). And a PICC line in a child is not that much different than a PICC line in an adult, so they may not have had the small size needed to replace one in a child, but the PICC line iteself should not have been a problem.

Here's a additional resource: the Children's Miracle Network website. It's a charitable organization that raises funds for local children's hospitals. It does not raise funds for all children's hospitals in an area (like in Minnesota, only Gillette Children' Hospital is a member, even though Minneapolis has an Excellent Children's Hospital), but at least it'

 

[3kids4me]

Hi everyone,

Thanks so much for your input.

Sue, believe it or not, I spoke to the ER doc on the phone that night, and she actually said to me "My expert told me there is no risk of bleeding even if the clamp falls off". Even though we were both telling her that the reason we knew it was cracked was because it was dripping blood (we then flushed it, and enough saline got past the crack to push the blood out of the line for the time being), she actually told us that was impossible. You cannot imagine how frustrating that was! We were so afraid that our emergency clamp (a scissor-like thing) would pull off if she turned over in her sleep...we only got a couple of hours of sleep that night before we caught a 6 a.m. flight back hom. It was truly a miserable experience.

We are going to DL in February and hopefully back to WDW next Christmas, my daughter's health allowing.

While I love the idea of getting one of our doctors to find someone where we are going and call ahead, the reality of it is that they just won't take that much time to make that happen. In fact, when the ER doc in Florida told our neurologist that she wasn't concerned about bleeding, he believed her. That's because he doesn't know anything about PICC lines either. The only people that do are the radiologists who put them in and the nurses that service them. Actually, now that I'm typing this, I think perhaps I'll ask our home health care nurse for some advice on this. She was also appalled at what happened in Florida, and at the time I didn't even think to call her. I'm sure she could have talked to that doctor and set her straight.

Those of you who have chronically ill children probably can relate to the fact that the parent ends up doing most of the work...whether it's making sure one doctor calls another, or monitoring the bloodwork, or checking for line infections. Our health care system is just not what it used to be.

But I digress and I'm just upsetting myself!! I'm sorry to be such a downer. Thanks so much for the advice. It is very much appreciated.

 

[SueM in MN]

You are right about doctors and PICC lines; most doctors probably never touch one. I am in the "don't touch one" category of nurses (I'm a specialist in Infection Control), but some of the stuff they didn't know was very basic.
The home health nurse would be a good resource since you trust her. That's the main thing, getting some resources from someone you trust. She might also have some general writen information about the "care and feeding" of PICC lines that she could send with you. That would have been helpful in your situation since you would have had something to show the doctor - if "X happens, here's the potential complication and here's what to do to prevent it."
Here's some "Total preparation" Pixie Dust (with a little extra knowledge pixie dust thrown in). I hope you don't need the extra knowledge part, but it's best to have some on hand in case you do.

 

[RNMOM]

I agree with SueM. I too am a nurse who does not deal with PICC lines. I work on an advice line. I have learned in my 28 yrs. in healthcare to listen to the parents who care for the child. You really are the expert.

If you can set up a person to call for reference at home and use them if you have to seek care for your daughter, that should be a big help. See about taking some literature/records with you too.

 

[pugdog]

As a respiratory therapist here at Childrens hospitals in St Paul I have learned that the best reference that I have to take care of any kid is the parent. To bad other HCW's don't under stand that.