We have a date.

November 17 is the date of Logan’s OHS.  We have to be there Nov. 16th for a whole day of testing.  I don’t even know how to feel about that date being set.  I don’t think the reality of that has really sunk in.  CHOP called yesterday morning while we were at  our local children’s hospital.  

 

And speaking of our local children’s hospital…

 We had such a bad day there yesterday.  There were a series of communication breakdowns, bad judgement calls, and that lead to Scott and I having to tell the Dr.’s that were there at the time that we were just going to leave.  This local hospital doesn’t have a lot of experience with really complex congenital heart defects and when a team of Dr.’s doesn’t have a lot of experience they tend to overreact because heart conditions are scary. 

The team that was there consisted of about 6 people (his primary cardiologist had the day off) one of them being a Hospitalist (a pediatric consultant that only works in the hospital).  The hospitalist (very young, she said she was 27) decided that Logan was in a life threatening situation and was going to stop breathing.  She came to this conclusion because she thought Logan had either asthma or constricted airway problems plus she thought that when Logan got upset and turned blue that he was going to stop breathing and die.  Now first of all, Logan has had these crying jags since birth ( I have posted about them many times) and when you have a cyanotic heart defect you are going to turn blue when you cry.  Healthy babies turn blue when they cry.   She came to the conclusion that Logan needed to be in the ICU on oxygen. 

Even though 5 other Dr. all came in and listened to his lungs and said that he didn’t sound like he was wheezing and that his lungs sounded really good.  But because this hospital is overly political, process driven, bureaucratic, and in a constant state of litigious fear they are unable to make any conclusions based on actual medicine and patient care.  Common sense is blown out the window when you  have a system were a Hospitalist one year out of medical school has an opinion that is as valuable as a cardiologist with 25+ years experience. 

But in fairness they had to all they had to “really consider her opinion.”

So they went and got a pulmonologist to evaluate him which Scott and I were very happy about because there was nothing in the world that would’ve made me more happy in that moment than to have her proven wrong. 

Which she was. 

 

(That is the world’s most uncomfortable chair that I slept in)

It took all of three minutes for the pulmonologist to conclude that Logan is not wheezing, does not have asthma, does not have any restricted airway problems, and then left the room and told the hospitalist to stop all breathing treatments because asthma medication was going to do nothing but speed his heart rate up. 

WHICH IS WHAT HIS PRIMARY CARDIOLOGIST HAD SAID A COUPLE OF DAYS AGO. 

Once they ruled out the lung problems.  They still decided Logan was in a life threatening situation because of how blue he got when he cried.  They talked about changing his medications, having him have a surgically placed shunt put in, putting him in an oxygen tent, and numerous other things.  I was even told his OHS date of Nov. 17 was too far away and needed surgery sooner. 

Wow, that is some big conclusions to come to after seeing my son for a couple of hours. 

His primary cardiologist who has been watching him since he was 20 weeks in utero and Dr. Spray (one of the best pediatric heart surgeons in the entire world) must be completely wrong. 

The most astonishing thing (actually more than astonishing I find it completely reckless) is that they made all these conclusions without consulting his primary cardiologist (Dr. Patel). 

They said since it was his day off they didn’t want to bother him. 

WHAT???

WHAT???

When I told them that I WANTED them to consult with him they told, “NO HE IS NOT YOUR DR.”

WHAT???

I am sorry but you cannot have a pediatric cardiology practice that takes care of critically ill children with no way of getting ahold of their primary care giver.  It is reckless, unethical, and irresponsible.  When you have a heart condition as complex as Logan has and when management of his condition is as complex as it is, you have to always be able to get a hold of the lead.  YOU DO NOT GO AND CHANGE ANOTHER DR.’S TREATMENT PLAN WITHOUT CONSULTING HIM.  I honestly can’t even wrap my head around this.  We are talking about children’s lives. 

So I called his office and asked his secretary to page him and she chewed me out, put me on hold for 5 min., the office manager got on the phone who also chewed me out.  Then his office called the hospital floor and had one of the nurses come in and chew me out for trying to get ahold of him. 

It truly is, completely and utterably unexplainable. 

Logan’s primary cardiologist finally called (he didn’t understand why no one called him) and soon after that we left. 

The lack of critical thinking skills was amazing, everything they were talking about doing was while his oxygen levels were 85+.  His stats were really good the entire time he was here.  When he wasn’t crying he was never below 80 and at the highest he was mid 90s but I would say more times than not he hovering around 85-88 which is great for his condition.  If anything should have been concluded from the on-call Dr.’s is how great his half a heart was able to handle a viral infection, not that he needs emergency surgery and a complete change in his treatment plan. 

If anything the job Dr. Patel has done in managing him has been quite amazing.  Most kids with his condition don’t get to make it to 4 months without surgery and with oxygen levels in the high 80s. 

I can’t even begin to wrap my head around all mistakes in this system, and the only thing I keep thinking about are all the other parents that aren’t as outspoken or maybe they are uninformed because many of these conditions come as a surprise and there is little time to be prepared.

To all the CHD Mom’s out there please listen to your gut and if you feel something isn’t right please trust your instincts.  You always have the right to get a second opinion and make sure that you are always aware of the hospital’s patient rights. 

And when you get a diagnosis please don’t listen to the people who tell you to not look it up on the internet.  PLEASE LOOK IT UP ON THE INTERNET, look it up in books, talk with other Mom’s, and gather as much information as you can because not all Dr.’s and hospitals are created equal and it is up to you to be informed. 

You have to be your child’s advocate.  

I would be very interested to know if anyone has had similar experiences at their local hospitals.  I know that bigger centers don’t behave this way but I am curious if others have had anything like this happen at their local hospitals.

 

6 thoughts on “We have a date.”

  1. *Standing ovation for Kristen*
    You and your child are not at the hospital to win any popularity contests with the doctors, nurses, and other caregivers. You are paying them for a service and have every right to ask as many questions as you want to, whenever you want to. Yes, they are the doctors and they may be more educated and experienced than most of us, however, they are not always right.
    Logan is one lucky dude to have such a tough momma & daddy in his corner!

  2. You are right that in general Dr.’s are more educated than us in general medicine but when it comes to rare diseases I think it becomes very common for the parents to know more than most Dr’s.

    1. “…when it comes to rare diseases I think it becomes very common for the parents to know more than most Dr’s.”

      You are absolutely right. I was surprised at how many of our nurses had become nurses because they had their own special needs child at home. They figured if they could take care of their own, they could take of someone else’s, and went to school to make it happen. Those were the people that I trusted with Gabe the most.

  3. I am just glad you have a date at CHOP. I sincerely hope that no other bugs make their way into your home before his surgery.

    You know how I feel about the doctors and nurses…you are a perfect advocate for your little man. I’ve never won a personality contest at the hospital either and have done my share of hurting feelings. It is said that doctors and nurses feelings get hurt (or pride) because we know more about what is happening with our child…we are their parents.

  4. We have personal cell phone and direct office line numbers for C’s two main cardiologists (fortunately they share the same personal assistant as well). At first I hesitated to bother them like that but not once have they ever done anything but respond immediately to our concerns. When C developed her horrible arrythmia after her second ohs my husband and I were terrified. We had no idea what to do and no idea about the electrical issues with the heart. My husbands first call was to her two cardios. Maybe your doctor would be willing to do the same for you. No matter what, continue to be the strong willed, outspoken advocate for your son. Good for you for demanding answers to your questions and second opinions. Nobody is infallible.

    1. None of the cardiologists here give out cell phone numbers, actually, they don’t even give out email addresses. I know it seems odd, I actually have yet to speak with a family that doesn’t have a cell phone number or email to reach their cardiologist. I have asked a million times for a better way to reach him but I was told no.

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