Plan B or is it T?

This last week or two has been insane. We've had extra shifts at work, school functions, blue bonnet pictures, projects at work, Tooth Fairy visits, play dates, birthday parties, blown out tires and so much more. We've had at least 5 doctor's appointments for sinus infections, ear infections, wheezing, tonsillitis, pink eye and the such. Kate is on day 12 of a 20 day course of antibiotics. She's in her super manic steroid state, despite being off of them for a few days. She can spend hours crying hysterically and totally inconsolable and then be fine the next minute. It is horrible to watch what a monster she becomes and it makes the fire burning under me to get a diagnosis, burn a little hotter.

Since last weekend, I've been in touch with not only the executive director of the foundation, Michele, (who was sweet enough to answer my millions of questions, on a weekend, no less), but have also been talking with the nurse for a doctor who specializes in PCD. From what I have gathered between the two, there are about 5 pulmonologist that are part of a research group for PCD. They are located in St. Louis, Denver, Toronto, Seattle and a few other places. Not only do they specialize in PCD diagnosing and treatment, but they are also very experienced pulmonologists.

After speaking with Michele, she highly recommended we get in touch with the nurse and coordinator for the doctor in Denver. This doctor is apparently a great doctor and a really nice guy. It doesn't hurt that out of all the locations, Denver has the cheapest flights. It's the little details that count, right? Anyway, I spoke with his nurse on Monday evening, after emailing her Monday morning, and she was extremely patient and kind.

After reviewing Kate's history with the doctor, the initial feel was that she doesn't have "storybook" PCD. Basically she is not a case that they can assume will test positive based off of history alone. However, they do feel that she has enough issues that point to PCD that we need to get it checked out. While we would love to have an answer for Kate's issues, we really don't want her to have PCD. Ideally this group will help us to rule out PCD. In the nurses opinion, we should get a second opinion (other than our pulmonologist here) and if we are going to get a second opinion, why not go with someone specialized in it. I've spent the better part of the week collecting records to fax to Dr. "Denver"'s office. We are waiting on a few more pieces to be mailed from the hospital so that they can have everything they need.

The set up in Denver is two-fold. There is the clinical side of things which is run just like a normal doctor's office. Then there is the research side in which this group of doctors is studying children with PCD or other genetic airway diseases. They are studying the genetic makeup, diagnosing tools and treatment plans. Since this is not a study that is funded by drug companies, but rather the government, we feel that it is safe to look into it. According to the nurse, Kate will most likely qualify for the research program under a probable PCD diagnosis.

The plan is for the nurse and Dr. "Denver" to review all of her files once we get them faxed. Next they will put together a plan including any testing that they would like to do. They will break down which tests and care would be included in the research group and which ones fall under the clinical side. The research group is pretty specific about what it will and will not cover. The benefit to being in it is that it will cover testing that falls under it at no cost to us. The down side is the fact that it is so specific and it takes MUCH longer for results, as it is required double and tripled checked. Anything that is not covered under research, we will file with our personal insurance and will be responsible for copays, deductibles, etc.

Once they have a plan of what they would like to do, we will decide what we want done. The next step will be to get pre-authorizations and a "quote" from our insurance company. Once we decide what we want to do and how much it will cost, we will book a trip to Denver. Usually they can get appointments made for within a month of getting past the insurance hurdles. If we choose to do both clinical and research visits, we will need to be there about 3 days. In theory, we could fly in early the morning of our first appointment and spend 7 hours at the clinic for research that day. For the clinical visit, the next day, there will be sedation used and they prefer that patients don't fly out after that, so we would need to stay until the following day. My thought is there is no reason to fly up there and sit in clinic for 7 hours all in one day. We will probably make it a 4 day trip. It is very nice that they are willing to do it all in 2 days so that we are not stuck making trips back for each aspect of it.

Once testing and diagnosing is done and a treatment plan is made, there is a good chance that we will be going back quarterly for a while. It sounds like they are interested in getting to the bottom of Kate's issues, PCD or not, and in making a treatment plan for her. This is one thing that has irritated me the most about the doctor here. Call this issue whatever you would like, but do something, anything, just not nothing, to treat it. So far, everyone I have dealt with has been extremely kind, supportive, patient (you know I hit them with hundreds of questions right off the bat) and professional.

In my last post, I expressed my confusion on why our pulmonologist here wouldn't redo the testing. It made no sense to me at all. I have been reminded MANY times in the last week that "when God closes a door, He often opens a window". Maybe God was trying to make it clear that we were not in the right place and that He had something else in-store for us. I do know that I am SLOWLY, but surely learning to sit back and relax a little. Truth be told, as offended as I can sometimes get that these things are not in my hands, I am SO glad that they aren't.

Last Thursday, Kate was scheduled for a MRI on her arm to check out the lesion they found on her x-ray last year. Since she has a heart defect, they were planning to put her under general anesthesia instead of the normal protocol of a simple, oral anesthetic. On Wednesday afternoon, I got a call from Kate's pediatrician. He explained that the radiologist from downtown called and had been reviewing his cases for the next day. When he got to Kate's, he pulled up all of her past x-rays and really felt that what was showing was just a benign cyst in her bone marrow.

Since our pediatrician was the one who wanted this done, I followed his lead. He had never had a doctor call from downtown to cancel a case like this. He said the guy was 100% sure it was nothing and that he was more concerned about putting her under with the breathing tube and all, knowing that she had respiratory issues already. He explained that radiologists are typically non-committal because they are simply looking at a screen. They see what they see, but they can't ask, "does it hurt", "does it cause issues with the range of motion", etc. So typically, they give answers such as, "everything looks fine" or "get this checked". The radiologist recommended having another x-ray of her arm done to make sure that nothing had changed since the last one. Since this can be done whenever we want and it saves her having to be sedated, we were ecstatic. To be completely truthful, the fact that we didn't have to be leaving the house at 5 in the morning didn't hurt either.

When people have asked how the MRI went and I've explained why it was cancelled, I've gotten a lot of surprised expressions. I think that people thought I would be upset and still want it done. On one hand, it was already scheduled (and had been bumped up 2 months) and it would have given us an absolute answer. On the other hand, my constant prayer the last week has been that God will open doors that need to be opened and slam the ones that need to be closed. I am fully confident that He is doing that and am learning to appreciate sitting back and watching His plan unfold. There have been so many "coincidences" over the past few months, that I might have to make that be my next post.