Monday, December 15, 2008


Aiden has been sick with a cold the past week and has had an outbreak of eczema since we've been in Maryland. In fact, I took him to the doctor's one week ago today, because as a mother of a baby about to get cochlear implants, I am scared to death of ear infections, or truly any infection that could delay our surgery date. Plus, I needed them to give me something for the eczema. The doctor told me Aiden just had a cold and it needed to run its course and recommended an over the counter lotion.

Let me preface this post with the fact too, that the reason I chose this clinic was because of its association with the hospital we bring Aiden to for his ears. It is a clinic though with a lot of family doctors, pediatricians etc., and when you call in, you can ask for your doctor, or take who is available. I'm new here, know no one, and I'm still trying to find the pediatrician I like best for my kids. This particular instance was with doctor number 2, a family doctor.

At this appointment last week, I asked if there was any fluid in Aiden's ears, and the doctor told me "not really".

"Not really? Does that mean you see a little or none at all?" I asked and proceeded to tell him about Aiden's situation.

"Nope, not really any fluid. Let the cold run its course and use the lotion for his eczema. You can get it over the counter."

Decision made. Period. Moving on to try doctor number 3. I was already planning how next time I would specify I wanted just a pediatrician, not a family doctor.

Well, today we had that chance ... doctor number 3. I had to take Aiden back this afternoon as he started wheezing and having very raspy breathing. On top of this, his eczema has spread, and from this morning to this afternoon made it to his face. The over the counter "lotion" wasn't working by itself. He needed more.

So we headed back in. As the nurse weighed him she commented how bad his breathing sounded and checked his oxygen levels. They weren't where they needed to be. Doctor #3 came in, looked at his eczema, and said we definitely needed a prescription to get it under control. Then she listened to Aiden's chest ... for like 5 minutes ... and tells me after all is said and done, that "Aiden is just a heavy breather. Bring him back in if it gets worse."


I think I was in such shock that she truly said that, I didn't know what else to say. I took a deep breath, wondered why I was even back to this place for a third try, and said very calmly, "although my baby IS a nasal breather, THIS breathing NOW, is wheezing. He needs a breathing treatment. Did you see his oxygen level?"

At which time, (get this), she checked his, thought the machine wasn't working, so checked her own, saw that hers was fine, and then ordered him a treatment. Then after the treatment, she listened to his chest and said, "Oh this is weird, now I hear him wheezing. We need to get him some medicine and continuous breathing treatments!"

No *&#@!

If it wasn't after 5pm and I would've known another office to bring Aiden to, I would have picked up my things and walked out. But he needed medicine now, and we got it. We came home with a nebulizer machine, Albuterol to use in the nebulizer, steroid creme for his eczema (to put under the "lotion"), and Prednisolone which will help both the eczema and his breathing (which by the way, can both be onset from a virus and go hand in hand ... hmmm, imagine that).

Oh, and on top of this all, Aiden has "some fluid" in his ears (at least she didn't say "not really" when I asked), but nothing red or pussy, no infection. I told her, "some fluid" is not allowed in a cochlear implant candidate, especially one so close to surgery. She asked me when the surgery was and then commented, "Oh, how nice, ear surgery right in the middle of winter!" AHHHHH!

Hmmmm .... three doctors ... three strikes .... and this clinic is outta here! Oh, I need a good pediatrician for my baby!

A mom from the parent-infant program we attend, gave me the name of this pediatrician out of Georgetown University Hospital, who provides pediatric services for families with deafness. How wonderful is that! A pediatrician who truly understands! Problem is though, it's over an hour away on a good day of traffic! Of course I'd love for Aiden to be one of her patients, but reality is, when your child is running fever and feels like crap, the last thing a mom wants to do is put them in the car and drive for over an hour!

I'm calling Aiden's surgeon tomorrow to give him an update on all of this. He is also in the process of getting us an appointment with a top ENT there at Hopkins, because of Aiden's EVAS/LVAS and his branchial cleft sinus on his neck. Maybe I can get in and see this ENT sooner than later. I'm interested to see what the surgeon says about all of this. Will they need to put in tubes to get rid of this fluid if it doesn't go away? Even though his ears aren't infected? My last ENT put him on antibiotics immediately (when our pedi. refused to) when Aiden had just "some fluid" back in Texas. I pray none of this affects his surgery in any way. We only have a little over six weeks to get our boy healthy for his big day!


Danice said...

I totally understand your panic to keep your boy healthy for his surgery! My son, Cole, just had his CI surgery on Thursday and I was keeping him from everything to keep him healthy! We'll be praying for Aiden's health and that you can find a doctor that will understand how to treat him best in these circumstances! Hang in there!

Drew's Mom said...

Don't let the fluid get you too worried. Our surgeon found fluid in Drew's ears 3 days before surgery. As long as it isn't infected, you should be OK. It just makes the chance of infection higher (which we had no issue with!).

There are mixed ideas on tubes and CI's. Some surgeons will leave the tubes in after the CI is in, others insist on removing the tube before they will do the CI surgery. I would talk with your surgeon, but generally tubes are only put in place for chronic ear infections - not just fluid.

Hang in there fidning a doctor. It is so hard, and I don't envy you having to find one in a city where you really don't know anyone! Have you asked the parents of any of your older, school age kids? Maybe they have someone right around the house that is good.

leahlefler said...

I'm glad you're getting an ENT! Our pediatricians are pretty useless for anything "extra." As in, they're great for the routine shots and that's about it. Our pediatrician wasn't worried one bit about Nolan's fluid, but the ENT put in tubes after three consecutive months of fluid (non-CI kid). Then when his tube clogged and his eardrum ruptured, the pediatrician wasn't worried again. The ENT was like, "HELLO! 80dB mixed loss??? Time for new tubes!" I basically ignore our pediatrician and talk to our ENT about any concerns with Nolan.

Getting into an ENT might get some antibiotics prior to the CI as a prophylactic treatment, and in any case will reassure you. Good luck in finding a pediatrician who is worth their salt!

Kel said...

Oh good gosh! I am so sorry you keep getting poor service. Good for you for searching out a new doctor that will take better care of your son! I had to fire a pediatrician because he just wasn't satisfying my standards, and it's tough trying to find a new one but so worth it in the end. Good luck with the fluid! Danny has tubes, and his ENT/surgeon doesn't have any issue with it. We haven't done a pre-op meeting to discuss whether we will be taking them out or not though.

Lucas'Mommy said...

I hope you find a good pediatrician soon! How frustrating! And I hope that Aiden is better soon!!!

Julie said...

Oh my goodness... I'd be tempted to go postal!

There's gotta be someone better out there. Are there any other families from your Parent-Infant program that have docs closer to you?

Wishing you peace, success in finding a better doc, and a Merry Christmas,


Christian's Mommy said...

Oh Tammy, I'm so sorry that you are dealing with all this. And you are right, while Dr. St. John is great, an hour drive sucks. We're only 15 minutes from her, but I chose to go with a pediatrician 5 minutes away...b/c you are right, who really wants to drive a long ways with a sick baby!

Tiffany & Tristan said...

That has to be so frustrating but Aiden will be just fine. He is always in our prayers. Love you