Random post

Here is Alanas wordle. It's a collection of words from this blog arranged randomly. Pretty nifty.

Seattle Childrens

Alright, so taking deep breaths and hoping against all hope that they have an answer for us off we go to Seattle. Larry takes Noelani and Shaylin to Ketchikan to meet my parents then he continues onto Seattle to meet me and Alana. We took an earlier flight so she wouldn’t be as tired the morning of her appointment and in hopes that she’d be able to settle a bit as well.

So we head to Seattle Childrens hospital bright and early. I am still chipper at this point because what’s the worst that can happen? They tell us she doesn’t have an immune issue and send us to rheumatology for the answers that we are sure to find. Alana is what, just over 3 now and it’s been a long and frustrating road thus far. Dr. McAurther had tried to gently warn me that if they had clear cut answers about Alana there’d be no need for them to actually see her. They’d be able to relay all the information on the phone. The hopes of this visit would be to gather more information, a fresh set of eyes if you will, and then come home and await the test results. With that in mind we meet with the fellow in immunology first, go over everything from bow to stern. He thinks a bit then tells us he is going to get the doctor and yes, the doctor comes in and wants us to go over it all…again. *sigh*

Now, before I go any further I hate to say it but…DOCTORS CAN BE THE BIGGEST JACKARSES ON THE PLANET!!!! Alright, I feel better now. Going on now.

After we tell him all there is to tell he sits back and thinks about it, takes it all in. Then he starts to tell us all the great news. Let’s start with #1- Alana is a “complicated” case. #2- There will be no easy answer. #3- We just will have to wait for medicine to catch up with her.

So yes, those are his tidbits of wisdom. He tells us that she’s had a rather in depth immune work-up. That what we are doing is all they can think to do at the moment. But, all in all this wasn’t something we didn’t expect. We are waiting anxiously for him to say the magic words (RHEUMATOLOGY) and he does!! What he says is…”We have another doctor who is both an immunologists and a rheumatologist, we will let him have her file and see what he thinks about it. Thanks for coming and as medicine catches up with her then we will be able to help her more. In the meantime what you are doing is great. Continue to manage her needs as they arise and stay in touch with all your doctors. See ya now!” (Remember to breath, don’t cry, remember to breath, don’t cry)

Through my frustration and tears I manage to speak. Why did we come here? Why can’t we see rheumatology? You are not giving us anything more than we came here with! Maybe it was my absolute desperation or maybe it was he just wanted this blubbering mess of a woman out of his office but he throws us what he considered a bone. Here, why don’t we send you to pulmonary and see what they think. First go ahead and get an x-ray so you can have that with you when you see them and they will get you in today before you have to be at the airport. What more can I say or do? He and his fellow are done; they are hand on the door, walking out D-O-N-E, done.

We leave his office, defeated, hurt, and feeling very, very alone. I call Dr. McAurther and she leaves a patient to take my call. I am amazed the woman could even understand a single thing I was saying (or trying to say). I tell her what just transpired and ask her, beg her, what we should do. I have to admit, that is the first and only time I’ve ever heard Dr. McAurther angry. It’s not her style from all we’ve seen of her but oh, she’s angry now. She tells us to go ahead and do the x-ray, go to the pulmonary appointment and she will call us back with a plan.

Alana does the x-ray like a super girl she is and it shows that she’s got an infiltrate in the LLL (left lower lobe) but that’s all. That’s not something totally unusual for her. Sometimes they are there, sometimes they are not. It’s nice to know as it means that we are just getting over another episode or we have one coming on.We take the x-ray up to pulmonary and meet with a Doctor. I can honestly say I don’t remember her name. One thing I do remember is that she made a point of telling us that she is a friend of Dr. R. (yes, if you’ve been paying attention like I know you are, Dr. R is her pulm. here. Go figure) and why are we there in Seattle? She listens carefully to us recant again the story of Alana. She looks at the chest x-ray and then she tells us what we have heartbreakingly come to expect. Alana is a complicated case. Stick with the status quo. We don’t feel that nothing is wrong with her; we just feel that we can’t figure it out right now. Did you enjoy Seattle? What time is your flight?

We leave Seattle Childrens at 9 pm that night. By the next morning Alana is coughing and running fevers again. We settle in for the long nights ahead and try to not fall apart.