I LOVE Roller Coasters....

...just not the emotional ones.

Today my Mom and I took Kate to the pulmonology clinic at the med center. We got called back and were in a room within 10 minutes of arriving. That place simply amazes me. They are most certainly a well-oiled machine. The nurse came in and took a brief history and within minutes the doctor was in. All in all, he spent about an hour with us. Here are the main points we gathered from the appointment.

1. Reflux may or may not play a role in her asthma. There is no test to see if she aspirating on stomach acid, food, etc. or if it is causing her lung issues. According to him, there is not a huge chance she is. This is very different from what every other doctor has said. Most have blamed her "suspected" reflux as the culprit for a lot of things. We aren't even sure she really has reflux at this point.

2. She IS on oral steroids far too often and we need to fix this. The best way to do this is through daily control medicines. She is on two currently and we are waiting to see if we need to go up on the dosing. She caught a upper respiratory bug last night, so this will be the first big test for her current doses. Usually within 24 hours of a snotty nose showing up, she is full out retracting, on breathing treatments every 3 hours around the clock for a week + and oral steroids. If she does wind up on oral steroids from this virus, we will be increasing her daily steroid.

3. She looks too good to be too sick. We get this SO often and while it is true, I feel like sometimes we get pushed off because of it. She is gaining weight fairly well and has not had any hospitalizations yet, so they consider her healthy.

4. The most likely "diagnosis" is that she falls into a class of kids who "wheeze with viruses". They wheeze every time they get a virus. Viruses get less frequent and less severe and usually fade away by the time they are 5. The viruses are fewer in the spring and summer and worse in the fall and winter. This is not true for Kate. She was JUST as sick ALL spring and summer, if not worse, than she has been for the fall and winter seasons. The only thing to do for this is control what you can, treat symptoms and wait for them to out grow it.

5. There is a slim chance that she could have Cystic Fibrosis or a problem with the cilia in her lungs and throat. Cilia are the hair like structures that move rhythmically to remove germs. The only way to test for that is to put her under and take a biopsy from her throat. I don't think we will do this yet, as he didn't say this would be possible to do while she is under for the other procedures. I also am not interested in doing too much to her just because she is sedated. The test for CF is a simple sweat test where they measure salts in her sweat. We will be scheduling that in the next month or so since it is simple and will be very simple to rule out CF.

6. According to him, her immunology isn't playing any role in this. I find that very hard to believe, but I am no doctor. He felt that since the immunologist didn't want to see us back for a year, she doesn't have immune issues. Also, her chest x-rays didn't show any "big bad pneumonia" which would be there if she "really" had immune problems.

7. There is a good chance that she will have allergies (I have HORRIBLE ones) and that will probably start showing up by the time she is 4 or 5. That is also about the time she should be outgrowing the "virus" issues. If this does become a problem, there is a good chance she will have continued issues with asthma from the allergies.

All in all it was a frustrating appointment. The doctor was very nice and was kind and compassionate, but I very much so left with the feeling of "and you came down here why". He made the comment that we were "making the rounds with the specialists" and while I KNOW it is just my insecurities, it hit me wrong. I think he meant it in the sense that we have a whole lot of appointment lined up. Believe me, I know. I am not scheduling appointments with specialist every single week because I'm bored. Our pediatrician is scheduling them as a result of her findings. What should I do? Not go? Write it off? "Ma'am your daughter has a heart murmur that I think should be checked out"... "Nah, we're good, but thanks". Believe me, if I had one week without an appointment, it would be heavenly. I promise, I DO have more of a life than that. If not, I promise I would take up knitting or basket weaving or sleeping!

Like I said earlier, he was not just rude and cold, he did try to be kind and caring. He said several times that he realized I was hoping for an answer and unfortunately, he just didn't have one. He commented on how well she sounded today (kind of like taking your car to the mechanic?). He didn't deny anything I was saying. It wasn't that he thought she was a perfect, normal kid. He said he totally gets what we are dealing with. There just isn't a big "key" answer. He looked over the list of issues we've had with Kate over the last 19 months and said that he didn't feel that any of them had a link to any other one. Things like the diaper rash her was quick to say that kids have sensitive hineys. Her constant viruses might be a little high for a child that isn't in daycare, in his opinion, but still nothing big. Most of the other things were unimportant or isolated and he didn't hear a murmur in her heart (although I heard it even tonight).

The action plan at this point is that he is going to do a bronchial scope in mid-January while she is under general anesthesia for the EGD scope and pH probe that GI will be doing. This will just check for damage or abnormalities. If the EGD scope and pH probe show that her reflux is out of control, we will treat it and hope that the asthma settles down. Otherwise I guess we keep working on getting her asthma controlled with daily medicines.

I hate that she is on so many medicines. I HATE that she is on such high doses of such strong medicines. I hate that she is on so many strong doses of medicines and is still not getting relief. Appointments like today tempt me to take her off all her medicines and treat her like a "normal" child. You know, let her play on public playgrounds (which she has NEVER done), let her go to Bible class, or heaven forbid, the church nursery. I mean, if she doesn't have "any" of these problems, why treat her for them? The medicines can't be good for her long term and they sure aren't cheap. Part of me feels like we might be over medicating and covering up for how bad she might really be "drug free". Maybe that is making her harder to diagnosis. I don't know.

Leah, Kate and I all are sick. We all have upper respiratory bugs. We all feel lousy. Leah has had it for over a week, so I took her in to Dr. F tonight. She has been sick around 10 days and it just isn't quite clearing up. Dr. F felt she was on the upswing, but wrote for an antibiotic since it is Christmas week and said not to hesitate if we needed it. The appointment wound up being a good time to touch base with her too. I waited until she asked about Kate and let her know what the pulmonologist had said. At first she was a little frustrated he wasn't doing testing or anything. She then refocused for a minute and came back with some great answers. She said, "You know the reason I wanted her seen, which is the same reason you were concerned, is that she is on oral steroids SO often. He agreed with that. He is wanting to get her daily medicines straight to try and make that happen. That was our goal". Very true!

When I told her my frustrations with the all the medicines with no change in results and confessed the fact that I was tempted to pull her off all of them she had this to say. "Whether he said it or not, saying that she looks so well should be a compliment. With all that she is dealing with she should have been hospitalized and she should look worse. You have done an amazing job keeping her healthy and for that you should be proud. Let's not see how bad she "could" be". I do not add that to toot my own horn, but I know there will be many days in the future that I will need to read that again. It is SO hard to know if you are doing the right thing. I think her point hit home. How much worse could it be?

I don't mean to sound negative today, despite being tired and sick.... and sick and tired. Every single specialist appointment ends with one of two results. #1 - "Go see _________ (another specialist) and let me know what they say" or #2 - "I don't really see anything. She'll out grow it when she's 5". She is my last baby and I really don't want her to grow up quickly, but if 5 is really magical then bring it on! Every time I leave an appointment, I praise God that we didn't hear the dreaded words, "Your daughter has __________". Unfortunately I often feel that if we had a diagnosis to work with, it would make my life so much easier. At least we would know. We wouldn't worry. We wouldn't search high and low.

I know that there is a really good chance that there isn't a simple answer or an answer at all. I know that God has a lesson on the other side of this for me. But for now, it is simply hell. It is seriously emotional, physical, spiritual torture for me. I'm too type A. Too controlling. I can deal with facts. ANY facts. Just give me facts. The what if's, worries, endless prayers, sleepless nights, guilt, stress, should I"s, why didn't we's.... they just don't end. It is ALL consuming. It has become my life. I keep saying that I'm done with all the doctors, tests, procedures and such. I make a strict plan to ONLY take her to the pediatrician and ONLY under this criteria. But then she gets sick or gets a new symptom. Could this be the missing piece? I take her in and they "find" something new and usually unrelated and I can't ignore it. I obsess. I research. I worry. I stress. Then the appointment rolls around and I get brushed off. Only to hop back in the line for another ride on the roller coaster.