Thursday, August 7, 2008

Doctors, doctors, doctors

This week has been a whirlwind so far. I have quite a bit of updating to do. So know in advance that this will be another long post :)

Monday morning, the pediatrician called and told us that we were to take Brooklyn to Dallas on August 6 (Weds) for an appointment with her new pediatric pulmonologist. She had an appointment for last Thursday, but that was the day that she was admitted to the hospital, so our pediatrician called in another favor to have her seen this week.

Later in the morning, the pediatrician’s office called again. They said that they had gotten back all of the results from Brooklyn’s stool sample from when she was hospitalized. She did not have a stomach virus. It turns out she has SALMONELLA.

What the hell??? I don’t even understand how this is possible. I asked how in the world a four month old baby could have contracted salmonella. The nurse was not at all helpful.

"Well, do you stick your finger in foods and then let her suck on your finger to taste it?"

"Does she ever touch raw fruits and vegetables?"
Um, no.

"Do you have pet reptiles in your home?"
What??? Hell no!

"Well, it can pass through breastmilk."

"But wouldn’t I be sick if I had it and was passing it to her through my breastmilk?," I asked.

"Yeah, I would think so, that would mean you had salmonella also."

So now she is taking Amoxicillin to knock out the salmonella. But seriously, I cannot understand how she could have possibly gotten it in the first place. It boggles my mind. I called Beth, our lactation consultant to ask if salmonella really can be transmitted through breastmilk. Everything she read made it sound as though it were not possible. In fact, she read a couple of articles that talked about how breastmilk kills off salmonella bacteria. She told us to sterilize all of Brooklyn’s bottles and feeding stuff. She said that is all she would normally tell someone to do, but since Brooklyn is "a special case" because of her other health problems, she said that I should have my breastmilk cultured to make absolutely sure I was not passing it to her that way.

I went to my OB Tuesday to give them some breastmilk in a sterile container so they can culture it. They said that it would take a few days to get results.

I hope, hope, hope that it did not come from me. Now I feel like I have been poisoning my baby. That I’m the reason that she had to go through all that hell in the hospital. But we will see, I guess. And if it’s not me, then we are still clueless as to how she could have contracted it.

Yesterday (Wednesday), we took Brooklyn to Dallas to see the new pulmonologist. I will call him Dr. G2 since the jackass first pulmonologist we took her to was Dr. G. Brooklyn did great on the way there - she slept the entire 2 1/2 hour trip!

Brooklyn weighed in at 10 pounds, 6 ounces. She was actually 10 pounds, 12 ounces last Wednesday, the day before she was hospitalized. Considering how sick she has been, I am actually surprised that she didn’t drop more weight. Her respirations were higher than they have been before - 60. Her oxygenation was still good - 95-96.

Dr. G2 was concerned about her stridor and how hard she was working to breathe, but much more concerned about her lack of growth. He was calling it "failure to thrive." Dr. A mentioned that the other day in the hospital too. I cringe at that term because in my mind, it conjures up images of neglected, abused babies. She is not even on the growth charts though, so that's what they consider it. He told us that he thinks she has a pretty serious case of laryngomalacia, not tracheomalacia. We cannot just let her outgrow it because it is to the point that it is affecting her growth. He recommended the following:

- A sleep study to see if she is obstructing and if her oxygenation is dropping while she is asleep
- A video swallow test, where they will have her swallow different consistencies of liquids to see what thickness of milk/formula she should be taking. This is because she often chokes when eating and he is concerned about her aspirating.
- An ear, nose, and throat consult including a bronchoscopy
- He also talked about the possibility of a procedure called a supraglottiplasty, in which they cut off the end parts of the larynx??? I think??? I just know it sounded scary.

Dr. G2 actually called a pediatric ear, nose, and throat doctor at Children’s Hospital and got them to work us in that day because we had driven so far. They finally saw us around 4 p.m., after I had dealt with the nightmare of trying to get a last minute referral from Dr. A, which my insurance required because he is her primary care physician.

The ENT doctor is Dr. M. He was kind of a of those doctors who talks down to you and acts like you don’t really know much of anything. Not very caring at all. But whatever. He couldn’t do a bronchoscopy because Brooklyn would have to be sedated. He did a scope that went up her nose and looked just at her larynx, since Dr. G2 wanted him to look at the laryngomalacia. I had to hold Brooklyn in my lap and hold her arms, legs, and body still while they put the scope up her nose and into her airway. Poor baby. She screamed and screamed. They told me that it doesn’t hurt her...just "pressure and pushing"...I don’t believe them because Brooklyn really sounded like she was hurting.

Dr. M said that he did not see any laryngomalacia! He said that her airway was extremely swollen and closing because of severe reflux. He said that Brooklyn needs to see a pediatric gastroenterologist. I asked if she had tracheomalacia....he said that he couldn’t know that without doing the bronchoscopy. He thought her main problem was the reflux.

How can a baby possibly sound like that when she breathes just because of reflux??? That just doesn’t seem possible to me. I mean, she works so hard to breathe, all the time. How could it be reflux alone? I know I'm not a doctor...but I just don't understand that.

Dr. M's nurse called Dr. G2 so that we could figure out what to do next. His plan is:

- Schedule Brooklyn to see a pediatric gastroenterologist at Children's Hospital
- Change up her meds. He is putting her back on Prevacid and putting her on a low dose of Erythromycin, which he says will make her stomach empty quicker. But he also said a side effect is don't ask me how that will help with her weight gain...
- Brooklyn has to start having breathing treatments with Pulmacort, an inhaled steroid, twice a day. Home health is going to bring us a nebulizer and teach us how to use it.
- He still wants her to have the sleep study and video swallow as well as possibly the bronchoscopy. These will all be in Dallas as well.

So. That's where we are now. Brooklyn has to see more doctors and have more poking and prodding and testing done. We went to Dallas to see one specialist and came home with three. And no real answers to speak of. We just want someone to tell us exactly what Brooklyn's problems are so that we can fix them and get our baby well!!! Is that too much to ask?


Momma Mary said...

Lady... I am thinking of you and keeping your family in my prayers!! Poor things!

Hope said...

It sounds like we're going through the same exact things, minus weight issues. We just had the sleep study and swollow study. I wish our pulm. would do supraglottiplasty, but he says they often don't work and need redone multiple times. The only thing he'll do is a trach. How can drs be so different? I hope Brooklyn gets better. I know of babies that had successful supraglottiplasty surgery. The recovery should be very fast too. You're all in my T&P!!

Carrie27 said...

Oh my! I hope that the next appointments give you some answers.

My dd is still on prevacid at 16 months because of reflux.

I'm off to read your most recent post to see if you have been given any more answers.

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