Thursday, July 24, 2008

The pointless pulmonology appointment

Yesterday morning, as promised, the pediatric pulmonologist's office called me. It was about 11:00. The receptionist said, "Dr. G wants to see you at 3:00 today." Okay. I called Dave and let him know when he needed to pick me up from work so that we could drive to the hospital together.

According to the scale at Dr. G's, Brooklyn was 10 pounds, 8 ounces, instead of the 10 pounds, 4 ounces she had weighed at Dr. A's the previous evening. Her oxygenation was 98%, and her respirations are still kinda high, at 36.

Dr. G came in and asked me several questions about Brooklyn's weight issues, but really wouldn't let me answer. He would cut me off and look through her chart. I was trying to tell him what her weight had been the past 2 weeks at Dr. A's. He told us that Brooklyn is gaining weight because his scale shows 10 pounds 8 ounces and it is calibrated every day. His scale is right, he said, Dr. A's scale is wrong. "The baby is gaining weight," he kept insisting. doesn't matter to me whether Brooklyn weighs 10 pounds 4 ounces or 10 pounds 8 ounces. Yes, either weight is too small to begin with. But Dr. A's concern was that she essentially was the same weight 2 weeks in a row and was not growing. Regardless of whose scale is the correct one, the point is that she was weighed on Dr. A's scale, the exact same scale at his office, 2 weeks in a row, and the number did not go UP. That's the issue...right????

Dr. G examined Brooklyn and then said that he was going to schedule the bronchoscopy for this Friday. He called the nurse in and told him to go set it up. Dr. G advised us that Brooklyn would have to be admitted to the hospital and stay that night. This is because of scary potential complications like bleeding from her lungs and nose and allergic reactions to anesthesia. (I didn't know this was the one has really been explaining this to you were right, Hope). I asked him if it really needed to be done, or were the potential risks of administering anesthesia to a 10 pound child really worth it. He replied that he would rather wait because of the risks, but was going to do it since Dave and I were pushing for it. Huh????

We told him that we were not pushing to have any procedure done. We do not want Brooklyn to be exposed to any risks or go through any pain that is not necessary. If she needs it, that's fine. But I don't want her to go through anything else that will hurt her. We told him that Dr. A had told us that we needed to come in sooner and needed to have the scope done. So we are postponing it for now. Same with the MRI, because it also requires sedation.

Dr. G said that he was going to have a home health agency provide us with a monitor that we will put on Brooklyn's toe or finger that will continuously check her oxygenation while she is sleeping for several nights. Apparently, even though her readings are good when she's awake, it can drop when babies are asleep. But he didn't give us any further info on this. I don't know if I'm supposed to call someone...who? Am I waiting for a call? I don't know.

We then discussed Brooklyn's reflux and the fact that we have not seen any improvement with the medications Dr. G put her on. She is also choking and coughing more, and not just while eating. Dr. G asked if we were putting rice cereal in her milk to thicken it up and help keep it down. We said no, because Dr. A had told us to hold off on giving her any kind of cereal. Dr. G got all upset and was saying that he didn't want to make any more recommendations if Dr. A was not going to abide by them. He went and got us some pamphlets about this thickening agent we can add to Brooklyn's milk to help her keep it down.

"Okay," I said, "so this is the plan, you want us to get this and put it in her bottles."

"Well, I don't know," said Dr. G. "I told you that I wanted you to put rice cereal in her bottles and Dr. A told you not to do it, so I don't want to tell you to do anything if he is going to disagree."

"So do we do it or not?"

"You can if you want. It's not going to hurt the baby."

I told Dr. G that I just wanted to know what to do to help my daughter. He said that he would call Dr. A and then I could either call Dr. A, or maybe Dr. A would call me.

"I just want someone to tell us what to do," I told him.

We were never really given an answer. And no one has called me yet today. I have a call in to Dr. A to discuss yesterday's appointment. We'll see if I hear anything back.

I have a major problem with the lack of communication between our pedicatrician and our pulmonologist. I am leaning towards thinking Dr. A, the pediatrician, is right. Mainly because I don't feel like Dr. G really cares about Brooklyn. We had the problem with getting him to call in her prescriptions two times. And he didn't send a report to Dr. A regarding Brooklyn's initial visit with him for over 3 weeks. He's going be get upset about Dr. A not following his recommendations, but yet he didn't send said recommendations to him for more than 3 weeks. Dr. A had nothing from Dr. G in Brooklyn's file at her 4 month visit last week. And Dr. G is denying what Dr. A's concern is...that Brooklyn isn't gaining weight. It's like he is looking to have a pissing match with Dr. A. Over what? How stupid. Can we please keep in mind that there is a sick baby in the middle of this? Can you just tell us what to do to help her get better?


Heather said...

My son had reflux, badly. We started putting cereal in his bottles at 10 weeks to help thicken the formula and keep it down.

Between that and the medicine it seemed to help him. He still spit up, a lot, but he didn't seem to be in any pain and he started gaining weight again.

So that's my two cents.

Hope said...

Wow, I agree, both of the doctors need to talk and agree on a plan. I do know that Ava has been on rice (for aspiration) since 4 wks old. The rice will help Brooklyn gain weight, so that helps Brooklyn in 2 diff ways. I would personally get the bronch done. It's usually under conscious sedation, so not put to sleep. She's obviously not thriving like she should due to her breathing problems, poor baby.

edie & ella said...

What an A hole --- can you find another pulmonologist? This guy sounds like a jerk... ask your pediatrician for a different referral. You have a right to fire a Dr. and just because he has MD behind his name does not mean he has all the answers...
I have been giving E squared rice cereal in their bottles though and it has caused NO harm...... Sam

Sam said...

Yes, fire the pulmonologist (sp?) ASAP. If he has an issue with your doctor it is unprofessional to bitch about it in front of you. My jaw was on the floor during the whole post, what a jackass!!

I am so sorry that he put your through this-I would never go back to him again. You might want to write him a letter explaining your feelings as well. It might not make a difference but you will feel better and he MIGHT look at his actions in another light.

Kymberli said...

Oh goodness. I'm so sorry that you're going through all of this. This reminds me so much of my best friend and her son (my Godson), Christian.

He contracted a terrible case of RSV when he was less than 1 month old which required hospitalization for almost three weeks. He will be 4 in December, and ever since the RSV he has been terribly ill with severe reflux, asthma, allergies, and other breathing-related problems. The doctors haven't been able to determine a specific diagnosis, as the severity of all of his combined illnesses seem more like symptoms for a greater, yet unidentified problem. He's even had a genetic panel test for cystic fibrosis.

A couple of years ago she took him out to National Jewish Children's Hospital in CO, which is the leading center for child respiratory problems. They were there for almost two weeks and did a whole series of testing on him. They set up a treatment plan and coordinated care with his regular pediatrician and pulmonologist. It didn't solve everything, but it was the best thing that had ever been done for him.

She is practically an expert with all of this stuff. I don't remember at what point Christian had the bronchoscopy, but I think that it was at NJ and I can remember that Becky had all of the same concerns about the procedure that you did.

She's in the middle of moving and won't have her home internet hooked up until sometime next week, but if you'd like, I can direct her to your blog or give her your email address to see if she has any words of advice for you.

Just let me know!

I'm thinking of you and your baby girl.

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