At times life is so simple and yet so difficult for Austin. Simple in that for him, in his home environment it’s perfect, he can watch Barney on YouTube as much as he likes or enjoy all aspects of the History Channel in the privacy and comfort of his own room. There is very little drama and only a little change when we ask him something he doesn’t want to do. It’s his normal, it never has to change, and this is what I have labeled Peter Pan Syndrome (a result of his fragile X and autism). Home, his room is his Never Never Land.
When we were involved in the clinical drug trial for STX209 (Arbaclofen) from April 2009 – July 1, 2013 he was a little more spontaneous, a little more adventurous, with its absence he doesn’t want to leave Never Never Land.
December changed many things, with his new medical history we’ll no longer be able to participate in any clinical drug trials. On one hand I’m thankful the STX209 study ran out of money and ended when it did, with his onset of Warm Body Hemolytic Anemia that could have had a drastic impact on the study results even though it wasn’t because of the study med.
I haven’t rescheduled our speech and language communication study in South Carolina, when I do, that should be a good sign that I believe we’re out of the woods. With the study criteria I’m not even sure if that will happen, the age cap on the study is 22 years old and Austin will turn 22 in March.
We are both enjoying home, we are both reinventing our own normal – I just haven’t quite figured out how to manage my new normal with a little less worry.
Every Monday we have a blood draw, every Monday I wait for that email message that tells me test results are available, every Monday I look at the changes and wonder will I get a phone call or are the numbers okay.
The Hemoglobin count is fluctuating just a little between the high 9’s and low 10’s. Numbers are still way off from normal (there goes that word again) but like everything else I expect we will have a new normal. I believe it’s a good sign that we’re still hovering around the numbers we were discharged with.
His white blood count has elevated since the first draw on 12/23, we were at 11.4 (high end of normal is in the 10s) and the last result was 15.9. No phone call last week so I’m assuming that it’s nothing to be alarmed about but that doesn’t mean I can make the worry stop.
Worry will just need to be something I learn to cope with, something I’ll need to put on the back burner but I have the feeling that the burner will still be on low. Worry will just be a part of my new normal.
Spleen removal (splenectomy) has a 67% chance of correcting Hemolytic Anemia. A splenectomy itself comes with its risks (thankfully we passed the biggest risk with the surgery, the surgery like any surgery can be fatal) for treatment of Hemolytic Anemia, the first two years will be the most critical, the onset of something that looks like the flu, overwhelming post-splenectomy infection (OPSI), could be life threatening if not acted on immediately and appropriately. There is also a probability that he could develop Systemic lupus erythematosus (SLE), if it happens it’s typically in the first year. We just need to hope that the odds are always in our favor. If the splenectomy doesn’t fix the Hemolytic Anemia there is one other treatment that comes with its own set of risk factors (or should I say worry factors) Rituximab. Hopefully we’ll not have to go there, but if we do we would have no other choice but to try it.
My biggest worry is because of Austin’s inability to communicate to me any aches or pains, he doesn’t understand what is normal or not normal, when it comes to health and how he feels. With that I truly fit the label not of a “lost boy” but of a “lost mom” because your guess might be as good as mine. For now there is often a peck on the forehead, many times during the day, just to be a general check that there is no fever. I’m always looking at his color, looking for changes, looking at the whites of his eyes – are they still white? I look at his urine (when I can catch him in time to ensure he doesn’t flush) and it looks a little darker than what I would consider normal but is this his new normal, it seems like it’s looked like this for a long time.
Throughout the hospital ordeal he always gave me the thumbs up and said “I’m fine”, when I really didn’t think he was fine. Just now I tucked him into bed and asked “How do you feel?” and he replied “Just Dandy”. In the hospital he was always working towards his “end game” he just wanted to go home and he’d tell the doctors or the nurses whatever they wanted to hear that would get him home.
Now that he’s home his “end game” has changed very little, he wants to stay home and he’ll tell me whatever he thinks will keep him home. Through everything he went through he never cried once, he never complained of pain, he never cried out in his sleep or moaned when moving. When he got sick he only apologized, he never told us before he felt sick, we never knew until after it happened.
So our biggest challenge now will be in managing his health. How do we do this without constant worry, I’m not sure we can do that. Worry will just have to be a part of our new normal, we can only try (hope and pray as well) to ensure it’s a very small part.
No comments:
Post a Comment