So now we have a diagnosis?? That’s the question we are left with. A time that should have been a strange sense of relief for us, a diagnosis, we were left with the feeling something that I equate to shoving a size 2 dress on a size 10 woman. Sure you can make it fit but should you?
Our life at this point is chaos. The older girls muddle through her hospital stays and endless visits to the doctors. We are searching harder now for an answer and finally it is very clear to everyone that what’s going on with Alana isn’t going to go away. It’s not getting better and this last stay was a wake-up call for all of us.
Time goes on yet again. It’s funny how that happens. When you least expect things to happen they do and when you expect them to happen they don’t. We spend month’s on pins and needles waiting for her next big flair up. Don’t get me wrong. She’s sick every time we turn around. Something to remember with Alana is this, when she’s “OK” it’s just that. She is always coughing. She is always having either fevers or diarrhea. The thing that makes it an OK day vs. a bad day is how she handles them. She can have a 100 degree fever and be laid out on the couch and needing to be watched at every breath or she can be 102 degrees and be up and playing and eating just fine. It really is a day to day on how she’s feeling. We can have weeks with no issues other than her normal self (slight fevers, 10-12 BM’s, slight coughing) or we can have weeks of bad days (high fevers every day, 12-15 BM’s, non-stop coughing). All is relative to us at this point.
Time goes on yet again. It’s funny how that happens. When you least expect things to happen they do and when you expect them to happen they don’t. We spend month’s on pins and needles waiting for her next big flair up. Don’t get me wrong. She’s sick every time we turn around. Something to remember with Alana is this, when she’s “OK” it’s just that. She is always coughing. She is always having either fevers or diarrhea. The thing that makes it an OK day vs. a bad day is how she handles them. She can have a 100 degree fever and be laid out on the couch and needing to be watched at every breath or she can be 102 degrees and be up and playing and eating just fine. It really is a day to day on how she’s feeling. We can have weeks with no issues other than her normal self (slight fevers, 10-12 BM’s, slight coughing) or we can have weeks of bad days (high fevers every day, 12-15 BM’s, non-stop coughing). All is relative to us at this point.
As I said though things are not going unnoticed now and her symptoms are demanding that the doctors pay attention to her. Something that is in the works is sending her to see doctors in Seattle. The childrens hospital here is amazing. It truly is and for our location on this big world and being isolated from a lot of things it really makes a huge difference for the children that live here. That being said, there are some services that they cannot provide. There are some thoughts floating around now that Alana has a rheumatological condition that is causing all of her problems. This is a great idea and seeing as we’ve done such extensive immune work-ups and random things with no real results. This is one area that she does fit, and that we’ve not looked at to a great degree.
The process of getting her there isn’t a piece of cake though. I mean actually getting her there is as easy as getting on a plane. Getting her seen there is another issue unto itself. I can say one word and make it all very clear to you why that was an issue…insurance. Do you have any idea how flipping hard it is to get clearance to go on a “fishing expedition”? We don’t have a diagnosis, we don’t have a clearly defined pattern of illness (in their thoughts) and why can’t we just use the doctors here?
The process of getting her there isn’t a piece of cake though. I mean actually getting her there is as easy as getting on a plane. Getting her seen there is another issue unto itself. I can say one word and make it all very clear to you why that was an issue…insurance. Do you have any idea how flipping hard it is to get clearance to go on a “fishing expedition”? We don’t have a diagnosis, we don’t have a clearly defined pattern of illness (in their thoughts) and why can’t we just use the doctors here?
Now this is another area that Dr. McAurther shines like the supa star she is. She gets to work writing letters to the powers that be that Alana does need to see rheumatology that no, she cannot wait for them to do their every 6 month rotation up here and that she needs to go now while she’s well enough to travel. Long and short or it, Dr. McAurther rocks and she gets us going. We are so excited as the approval comes down because that also means they will pay for our tickets, well Alanas and mine, hotel, and food for the both of us. This is a huge, huge, relief for us. Now all we have to do is wait for Seattle to call and tell us when our appointment is going to be. Yea!
That call finally comes (it wasn’t really all that long, a week or so) and it’s from Immunology. Huh?? We don’t need to see Immunology seeing as we have a wonderful one (Dr. Demain) here who’s been in touch with the doctors in Seattle already about Alana. For that matter he’s contacted colleagues across the country regarding her and what tests should he add to her already impressive resume. Why are you making me appointments to see them when we are suppose to see rheumatology, they are suppose to be the ones that help us with her not sending her somewhere where they are going to redo the things we’ve already done!!
After some phone calls to and from the doctors in Seattle and here turns out that rheumatology doesn’t want to see Alana. They feel that she does have an immune issue and that if we see their fellows and doctors and they say that she doesn’t that have an immune issue then we can see them. ARE YOU KIDDING ME!!
