Saturday, January 17, 2009

Post-Biopsy



Yesterday, Jordan was scheduled for his yearly heart annual. This is a procedure that biopsies portions of his left and right ventricles to assess whether there are any symptoms of rejection, among other things.

The good news is that the procedure is over, pending results. The bad news is I've reached a level of frustration with this hospital that I can't justify anymore. As usual, it was an awful day. I can live with that. I can live with the inconveniences, the tears, the general unpleasantness of the ordeal. But what I can't live with is putting my son at risk.

Long story short - yesterday, after a lengthy delay, they surgical team brought Jordan into the OR, and while we watched, put him under anesthesia. We left. An hour or so later, a doctor rushes into the waiting room to inform us that because the OR's computers were not working, they would not be doing a full biopsy, so they were moving Jordan to another room and doing a partial biopsy, and maybe the next time we brought him in, they could do a full annual.

Then he rushed out. It took me a minute to process what he was saying. And then it occurred to me. Without confirming that the equipment in the OR was operational, they brought my son in there, put him under anesthesia, and began a procedure on him. During the process, at some point, they discovered the equipment was not working, and so they made a judgement call to physically move him into another operating theatre, do a partial biopsy, and delay the full annual until another day.

I'm livid.

Is it too much to ask to confirm that your tools are in order before you cut someone up, gas him, and remove small portions of his heart for study? I think not. Putting anyone under anesthesia is a risk. Doing it with a four-year old, without ensuring that your surgical computer station is working is shameless to me. I do not know what kind of protocol or surgical checklist the head cardiologist should do before beginning a biopsy - but whatever it may have been, it was not done here.

Am I asking for too much here? Am I being unreasonable? I might be able to dismiss the incident, if this was the first time something like this has happened to us. But it isn't! There was another time Jordan went in for a biopsy, and after waiting for hours, the doctor came out to tell us that they had gotten a late start because "the computers weren't working."

I can live with malfunctioning computers if all we're talking about is some stored Word documents. I can't live with it when my son is laying unconscious on an operating table.

I'm deciding what the best approach is to discussing the situation with his doctors.

Yesterday, we had bigger problems to deal with than an all-out confrontation in the middle of the cath lab. We had to take care of our son, who was miserable when he came back into recovery. As usual, he was exhausted, nauseous, coughing, covered in cathodes and hooked up to an IV. Once he awoke, he was groggy. We brought him home, and after 18 hours, he finally ate something. He went to bed early.

We've been through this enough times to know that he would be better in the morning. The worst was behind us. We moved on to happier things - celebrating Michael's birthday.



We tried to forget about the day at Morton's Steakhouse. It was a well-needed break; and the restaurant did a marvelous job at making the guest of honor feel special. Even the menu wished him well!



The restaurant offers cute little touches, like providing free birthday pictures of the table as souvenirs.



And did I mention, they are free! I'm usually such a sucker for the picture thing at places. It was nice to have a small token, gratis.

The food was fantastic. And I am a big steak fan. I've eaten at some of the best steak restaurants in NYC. The job they did at Morton's ranked right up there. Trust me, I was shocked, because it's a chain restaurant. Not my usual thing.











We tried very hard to avoid talking about the morning. Sometimes it seems like there's just nothing to say.

In the morning, Jordan was back to normal.



We celebrated by throwing him into the bounce house, along with his sister, and laughing at them, caged like two animals. Judging from his activity level, I think he was feeling fine. He ate well all morning, ran around like a maniac, napped, and didn't mention the hospital once.











Jordan and Grandma turned to quieter activities as the evening approached. Here they're playing with the sun catchers and trying to make the suction cups stay put on the cold glass.



Apart from the small incision site in his groin, and the residue of seven cathode stickers all over his torso, you'd never know he'd been through anything.

That's good.



Tomorrow is a big day. Jordan's turning four! We'll be having a party in the afternoon at a local kid party place. He's been looking forward to it for weeks. And to get the day started off right, we'll have a special breakfast in the morning. We set the table tonight, so he'll be surprised when he comes downstairs.



Jeff insists he's sticking with pancakes tomorrow,even though it's the same thing he eats every other day. Why mess with what works?



I hope tomorrow will be a great day for him - he deserves it.

10 comments:

Anonymous said...

Wow! That is just a horrible experience you had to endure at the hospital! It is bad enough that your son has to go through that each year as it is. I agree that there was no excuse for them to not check the computers prior to starting his anesthesia /procedure. Someone didnt do their job correctly...because there IS a checklist that has to be completed prior to placing someone under anesthesia! My daughter is an RN and happens to work in a cath lab for adults..but there is a checklist nonetheless. I am sorry you had to deal with that. As a parent, we want to be able to protect our children from everything, and when something is out of our control, and goes wrong , we tend to feel as though we let our child down. You did everything you could to make him comfortable. I think you handled it like a champ! I am glad it's a distant memory for him now and that he can move on and enjoy his birthday as planned! Please do follow up with a patient care rep at your hospital. This definitely needs to be addressed so that it does not happen again to your son or any other child for that matter. God bless your little boy. He is fortunate to have a mother like you that cares so much about his well being.

Anonymous said...

Ugh! Totally unacceptable! Does your hospital have a feedback forum set up (perhaps on their website)? I would recommend complaining to the hospital administration as well as your doctor because then you allow the administration to get involved. If you only complain to your doctor you're asking them to confront their colleague which is not likely to really change anything in the future. To make those computer checks MANDATORY it would have to be enforced/spear-headed by the administration. Just a thought about how to make sure this doesn't happen again.

Glad Jordan is feeling better. Paul and I were laughing at the pics of him in the bouncy castle the day after a biopsy. I love seeing the differences between transplant programs. Zoe's docs have a different philosophy about 1-day post biopsy (keep her calm and still, don't let her run around or jump); they would have had a heart attack seeing those pictures and yet he's perfectly fine :)

Anonymous said...

I'm shocked at the level of incompetence shown by this hospital. Is there no way to change hospitals?? On a happier note, a very, very happy birthday to Jordan. He truly is a trooper - hope he had a rocking party!

Ash

Grandma H said...

I don't sleep well the week before Jordan's biopsy. I know that these biopsies are a necessary part of his care, but that doesn't make it any easier to deal with. I worry about the procedure that they put Jordan through and of course the outcome. And then there is the memory of things gone wrong in the past and my worry intensifies. If I was at the hospital I know I would have lost it. I would not have been polite to hospital staff who are in my opinion incompetent. What they didn't do to make sure that everything was in working order before Jordan was put under, is inexcusable. Jordan doesn't eat before the procedure. He is upset knowing where he is going. They ask that he's at the hospital at 8:00am and then it's noon and nothing has been done yet! How do you do this to a 4 year old?
It did make me feel better to see Jordan "bounce" back the next day. I am thankful for that. He had a wonderful birthday! I'm sure the next blog entry will tell all.

Nikki & family said...

Good Grief! I can not even imagine going through that. I know how scary it is just having your child but under anesthesia as we just the same in December for Nicholas for the 2nd time. Poor Jordan!! I wish he didn't have to go through that every year. XoXoXoXo to all of you!!!

Anonymous said...

Three words for you Boston or CHOP. Some of the best child life specialists around and both are top Children's cardiac centers.
And Beantown is always a favorite with the kids - the Children's Museum and the Aquarium. Mina might think the city is named after her...:)

Anonymous said...

Unacceptable! I am so sorry yall had to deal with the hospitals lack of checks! I would definitely write a letter or call someone higher up. This should not be happening to anyone!

Thank God Jordan is such a cool kid and was back to being his cheerful self shortly after. Hope the party was a blast (wish we could have been there...)

~A(mina)'s mommy

Family Scads said...

You have every right to be livid with the doctors and hospital staff (I can definitely sympathize) . That is not fair to Jordan or you. I'm so sorry that you all had to go through that. Beckham's doctors do not do biopsy's unless then notice any sign of rejection in his ECHO. I really like this idea, but I have heard of children being in rejection even when their ECHO's look good. I guess that you can't win either way.

Happy birthday Jordan! Way to go little guy.

ianandfelicia said...

You already have to go through so much, you would think that the hospital could take some special care to make sure things don't go wrong when dealing with a child! Its just awful. I think you have every right to be upset AND to say something about it. They need to know that the ball was dropped, someone didn't do their job and that your family was put at risk! Its tough enough that you have to go through the biopsy and seeing your little boy like that, it should be there job to make the procedure go smoothly so you don't have the extra worry!!!

I am glad that Jordan is doing ok, I hope you and Jeff are too.

Tahera said...

This makes my blood boil. Riz and I were just saying yesterday that you and Jeff are the most capable and responsible people we know. Jordan could not have been blessed with more wonderful, vigilant parents. I am absolutely certain that you will be able to attain the best care for him.