Making the Cut

Kate's health hasn't changed much. She's on steroids and breathing treatments at least once a month. She still has diaper rash to the point of bleeding every couple of weeks. She hasn't had an ear infection since her surgery and that is exciting. Since then we've had more of the same.

A few weeks ago, she started with a clear runny nose, like always. I called to get an appointment for the next day, knowing that she would be bad off by then. Our pediatrician went part time last year and only works mornings. We've seen the pediatrician that tag teams with her, working only afternoons, several times. This particular day, the only doctor with availability was the new doctor. I figured it wouldn't hurt to get a new opinion and I would certainly be meeting him at some point, so why not now. We went in and he spent a few minutes examining her and diagnosed it as allergies.

If you haven't read my previous post entitled "FRUSTRATED" please go read it before you continue. I don't want any "you're an idiot comments".

He recommended that we put her on Claritin. Seeing how we have tried just about everything under the sun, I decided that it couldn't hurt to try. Maybe it could be something simple this time. Knowing Kate's history, I pulled the "this ain't my first rodeo" approach and asked that he at least write for an antibiotic, as her file, that's as thick as a phone book, shows she goes south quickly. I agreed to try the Claritin and only use the antibiotic if she got worse. By that evening she was running fever and wheezing. Should have gone with the mommy gut, but it couldn't hurt to try. Needless to say, I don't think the new doc even peeked at her chart and I'm not too impressed.

We started breathing treatments and by bedtime the second night, she sounded really rough. I gave her a dose of steroids (the doctor always writes for more than we will need so that we will always have some on hand) and a double treatment. She was really retracting and kept laying down. Usually she is pretty hyped up and active, even while retracting and having trouble. After a phone call to the on-call nurse, it was off to the ER. When we got there it was packed. This particular ER has a pediatric ER doctor so you don't have to wait to get through everyone, just the kids. We checked in and sat by the main door, away from the rest of the waiting room. People were sick everywhere. This was in the middle of the swine flu stuff and it really made me anxious just being there. I HATE emergency rooms.

We finally got called to triage and she had a slight fever, but her pulse ox read 100%. This is one of the things that scares me so much about Kate. Often she sounds horrible but is sat'ing fine. Other times she will seem perfectly fine and be sat'ing in the low 90's. It is scary not to know. It is so hard to not worry when they sound bad. Especially when it is bed time. I never feel comfortable putting her to bed when she is wheezing. When I saw the 100%, I almost asked if we could just go on home, but didn't want to feel like an idiot if she had more trouble that night. We waited close to 2 hours to get in a room (around 12:30) and by this time there was no doubt that we hadn't waited long enough for the meds to kick in at home. When the nurse came in the room, Kate was literally jumping on the bed. I got the typical, "She doesn't look sick to me" response from the nurse.

He left and we sat and waited. And waited and sat. Finally at about 2:00 I poked my head out and asked if it was going to be much longer and if I needed to go ahead and give her a breathing treatment since she was past due for one and it was obvious we were going to be a while. The nurse made some comment about the doctor forgetting us and the doctor sitting across from him got up and came in. I was worried at this point because Daddy-O had to be at work at 4 am and I didn't know what he would do with Leah.

The doctor came in and said she was wheezing and gave her a dose of steroid. He called a respiratory therapist who came and watched me give her a treatment while she talked about her belly button piercing and tattoos. The doctor then came back in and said to keep doing what we were. No chest x-ray. Nothing. I seriously will not be going back to the ER unless my child is blue. I do need to find out if we can go in and have her pulse ox checked at triage without having to stay unless it is dangerously low. Or maybe if I took her to the fire station, the paramedics could check it? Just a thought.

The next afternoon I took her in to see the afternoon pediatrician. This doctor has seen Kate enough times to know her style. She heard a lot of crackling in her lungs and wanted an x-ray done to check for pneumonia. She switched her antibiotic and gave us more steroids. This doctor is extremely thorough with her exams. While listening to Kate, she noticed a heart murmur. She explained that it was highly likely that it was because of the steroids and breathing treatments and to have it rechecked again when she was off of them.

Five days later, Kate was still wheezing and retracting, despite steroids, antibiotics and breathing treatments every three hours, even during the night. I took her back in, since we had finished the steroids and I was pretty sure she would need more. At this point the doctor informed me that you can't take this steroid more than 7 days in a row NOR more than once every 6 weeks without having to be weened off of it with a tapered dose. I had never heard that before and Kate rarely makes it a whole 6 weeks between courses. I asked her if she felt that Kate's asthma was controlled enough and she sure didn't seem to think so. She recommended that we see a pulmonologist, something that I've asked her primary doctor about numerous times. She increased her daily steroid to 6 puffs a day, and added a new drug, Singulair, on top of it. She also still heard the murmur, describing it as being in a really isolated spot. She said if she moved just slightly in any direction, she couldn't hear it. She felt like there was a good chance it was still the breathing treatments, but still wanted it to be checked again especially since it was in such an exact spot and could have been missed easily.

Fast forward. Kate has actually been pretty good the last two weeks. She's had her horrible diaper rash, worse than I've seen it (bleeding badly, totally raw, sores, blisters), but otherwise she's been good. I took her in for her 18 month well check this past week and saw her primary pediatrician. She did her exam. When I mentioned that we had an appointment with the Pulmonology and GI specialists (that I have asked about getting appointments with before), she said, "Yeah, that's a good idea". Why wasn't it a few weeks ago? Then I mentioned the heart murmur. She responded rather quickly that she hadn't heard it and listened to it again, briefly (like seconds) She then said that she had heard it, but it was nothing to worry about. She wrote down a name and said I could look it up. I asked her to see if she could find where the other doctor documented it, in case she wrote specifically where she heard it and she said that it was so minor, the other doctor hadn't even put it in her chart. When I argued that she had said she was going to and I was pretty sure she had, she finally found it, but still shrugged it off.

I then asked for some clarification on the lesion on her arm. Months ago when she had a chest x-ray, the radiologist noted that there was a lesion on her arm. After an x-ray of her arm, they said there was a spot there, but it was fine. The last chest x-ray she had, he noted it wasn't there (just because I was expecting it this time) despite being there for several before. I asked exactly what it was and she described it as a cyst, a pocket of water or air in her bone. When I commented that it was gone now, she said it would most likely go away, but not for a few years, they just didn't see it this time. When I asked, "So it shouldn't grow or change or anything other than shrink" she answered, "Right. If it were cancer or something it would grow or have rings or starburst patterns" and shrugged it off. I felt dumb for asking, but never know whether this is something I need to mention to other doctors or not. To me it seems that since there is something there and she's got so many other issues, maybe it would be a good idea to check it again in 6 months or something, to make sure it's not changing any. Just a thought.

With the heart murmur, I KNOW that MANY people live with heart murmurs. I know that they don't cause any problems with most people. I am sure the lesion on her arm is the same way. However, when you have a kid that is sick, you don't want to have to wonder. It's not like I go out looking for this stuff. If it is so unimportant, I wish they wouldn't mention it. Now I don't know what to do. Do I go back to the afternoon doctor and see what she thinks? Do I go to a totally new office and have them check it all out? And if I do am, I going to get a whole different opinion to try and sort out? I could really use a "you're on the right track" or a "how'd you miss this" right about now.

The next morning we had our appointment with the GI specialist. He was extremely nice and informative. We saw him a few times when Leah was a baby and I really like him. He spent about 30 minutes going over her history, including lab work, x-rays, etc. and then asked, "what can I do for you today?". We talked about the relationship between the reflux and asthma. He dropped her Reglan and doubled her Prevacid. He said she most certainly has severe reflux and I could sense he was wondering why we didn't come in when she was having blue spells as a baby. He explained that controlling her reflux wouldn't cure her asthma, but should definitely help with the frequency and severity of it. He suspects Kate is having more issues with it than we are aware of. She will still hand us a piece of food after she burps occasionally and even spits up out of her nose some too.

His plan is to try to wait until the spring, giving her every chance to grow out of it (most do by age 1) and then do a scope to rule out inflammation in her GI tract that can cause reflux like symptoms. While she's sedated, the will also place a probe in her esophagus that will record how often and how much acid reaches it. That will stay in for 24 hours. Then based off the results, they will most likely do surgery. The surgery is a fundoplication, which is basically wrapping the top of the stomach around the base of the esophagus to add support and tighten the valve. It's a laparoscopic surgery, but sounds like it's pretty intense. I think there is a minimum 3 day hospital stay involved with it. However, the success rate is very high. The doctor said it it the most effective treatment for asthma/reflux patients. He was sure to let me know that if at any point we wanted to go ahead and do the probe OR if pulmonology wanted it moved up OR if she got any worse or didn't improve on the new medicine dose, he would do it sooner. He is pretty sure she is out of the window for growing out of it, but "felt she was too cute to operate on unless he just had to".

After leaving there, I was impressed. The appointment went so well. I felt like he listened, wasn't being drastic, was giving her body the benefit of the doubt, was kind to her and respectful to me. However, I was a mess the rest of the day. Partly because I dread the thought of another surgery. I also dread having something looming in the future like that. Sometimes it's easier to just have things happen in a hurry and not have to dwell on it. The other part of my funk was because I started second guessing so much.

Why didn't my doctor refer us to GI sooner? As a baby, Kate would literally turn blue from choking while nursing. She wasn't even a month old when she had an upper GI that showed severe reflux. Why didn't I push to get into a specialist? I can't help but wonder if that is where some of her asthma issues stem from and if we couldn't have prevented some of this. It seems like I have to push or go do things on my own and they keep coming up that there is something. It took a lot of convincing to get the lab work for her immune system and then, low and behold, it showed something.

I'm not saying that she is a bad doctor. She is one of the nicest, most down to earth, caring doctors I know. I just don't feel like she's as eager to search as what I need right now. No one is perfect. I realize that she only sees her part of the time and doesn't realize how often we are in there. Right now, I need someone who can stay up to speed on it all and look for the seemingly unimportant clues. I am not wanting to go out and search every inch of Kate for clues, but when things jump out it seems like they would be worth eliminating.

I know that I know NOTHING about hearts, or bone lesions, but as the mother of a chronically sick baby, I can't quit wondering. It may very well be that there is plenty enough evidence that it is nothing already there. I think I just need to hear someone else say it though.

We were supposed to see pulmonology on Monday, but the appointment was moved. I think we will probably go back to see the afternoon doctor and explain the issue to her and see what she thinks. I'm also trying to get another pedi to look over her file and see if we are "barking up the right tree" or not. I figure at this point it can't hurt to have a fresh set of eyes.