Things have been relatively quiet on the home front these past few months.
So what has been going on? End of junior year is fast approaching. The boy has been so busy with exams, concerts, concerts and exams some days it seems like we never even see each other. The house is a wreck, the dog slightly lonely. But, he wouldn't change it for the world. And I am just so thankful that he gets to be this busy.
We won't have any major health updates until the end of June. The liver dude has ordered more bloodwork at that point. He is so sure that the boy has this thing beat, he didn't feel like he needed to keep up the monthly sticks by the vampires. Right now it is suppose to be resting time for his liver to heal. But, see above about those concerts and exams.
He is feeling fine in the liver department, although he is sick with a cold or something like that. I'm waffling on the edge of watchful eyes and taking him to the doctor. There is no fever, and that is the turning point. Fever = ER. With a compromised immune system anything can be a problem so we are prepared with all the fun things you have to do to stay healthy. You know that stuff your momma taught you when you were younger. The liver dude even wanted him to carry Lysol wipes around in school for the desks, that was where the boy said no. He didn't want to be THAT kid. He will wash his hands, use hand sanitizer, and stay away from sickies, but wiping down each desk in school is just too much. I don't blame him.
To keep his immune system on a leash he takes 150 mg of Imuran (azathioprine) a day. Imuran basically suppresses your immune system by keeping it from producing the stuff that a "regular" person needs to fight off disease. So a cold, flu, etc is a big deal. He can be sick for longer than you and I because of these minor things. He can end up hospitalized. We can't self medicate with over the counter drugs.... look at the labels. Many of them mention liver issues as a reason not to take them. So when the boy gets a cold, it is troublesome. It freaks me the heck out, I'm not gonna lie. He coughed this weekend....and I drove him (and me) nuts. I can't help it. Last time he had that rattling cough.... we went to the PICU. Call it PTSD, over protective, being a mom.
From the great Pappa Wikipedia....
Azathioprine is used alone or in combination with other immunosuppressive therapy to prevent rejection following organ transplantation, and to treat an array of autoimmune diseases...
I won't list the adverse effects, reading them makes my blood pressure go up. But you can read for yourself here. http://en.wikipedia.org/wiki/Azathioprine
Wednesday, May 28, 2014
Monday, May 5, 2014
a little lesson on breathing
And this is why i didn't set a once a week or once a month idea for posting.... It is a deadline. Deadlines in my life are not good for me. I deal with strict rules and deadlines at work... in my real life I need some freedom. So... that coupled with amazing health from the boy means I'm a slacker of massive proportions with a blog. But quickly, he is rocking this living life thing. School exams, concerts, sleeping, breathing....he is mastering them all.
Today I have been thinking a lot of self reliance. My boy is a self reliant, independent young man. He came out of the womb that way in a lot of ways. I'm realizing more and more... he gets that from his mother. BLASTED CHILD! Some of the things that tend to irk me... I gave him!
Because of this independence I now can see the signs that were overlooked before the "incident" those things the doctors asked in the ER that made me feel like the worst mom of the millennium.
The stuff I've underlined were there at least a month before his hospital vacation. And yes, we did go to the doctor. Several times. When he was loaded into the ambulance his pulse ox was something near 50. That is HALF of normal, meaning his organs were only working on half of what they needed to survive. That is why he went downhill so fast.
But I didn't know what I needed to know- so I didn't ask questions that I should have maybe asked. How are we as parents suppose to know everything? We can fake it... and some of us pretty well. But BS and Google can only get us so far!
My perfectly healthy teenager had no reason for me to not believe the doctor's diagnosis. He was tired, because he is a teenager and needed more sleep. He was confused in that way only a teenage boy can be. The swelling was attributed to injury, not water retention. And the fingers.... well he held on to this little ditty of info until we went out to a local university for testing a month after his hospital visit. Only then did I learn that his hands tremor, and can go numb. Again y'all, mother of the year am I! No really, the liver dude told me early on not to beat myself up and not to get mad at the doctors. Again, we didn't know what we didn't know. There was no history to tell us that he had an issue until that day.
You never know where your endpoint is. We are blessed with whatever time we have here on Earth. Blessed to wander and wonder about what this life is for. Think about why we are here, do for others and be love and light. My boy and I have a new leash on this. For me it has driven me into action to create the life I want. For him, it has given him the will and strength to stand up and say, just watch me. He has learned to speak out for himself, yes even against his mother's wishes sometimes. However, he does it with respect and to try and share the view from his corner of the world.
Today I have been thinking a lot of self reliance. My boy is a self reliant, independent young man. He came out of the womb that way in a lot of ways. I'm realizing more and more... he gets that from his mother. BLASTED CHILD! Some of the things that tend to irk me... I gave him!
Because of this independence I now can see the signs that were overlooked before the "incident" those things the doctors asked in the ER that made me feel like the worst mom of the millennium.
If you feel you may be experiencing low oxygen levels be sure to ask your doctor to check your pulse oximetry reading.
Symptoms are:
- shortness of breath/ difficulty breathing/ dyspnea
- extreme fatigue
- chest tightness
- mental confusion
- tingling fingers
- water retention (especially feet/ ankles)
- chronic cough
But I didn't know what I needed to know- so I didn't ask questions that I should have maybe asked. How are we as parents suppose to know everything? We can fake it... and some of us pretty well. But BS and Google can only get us so far!
My perfectly healthy teenager had no reason for me to not believe the doctor's diagnosis. He was tired, because he is a teenager and needed more sleep. He was confused in that way only a teenage boy can be. The swelling was attributed to injury, not water retention. And the fingers.... well he held on to this little ditty of info until we went out to a local university for testing a month after his hospital visit. Only then did I learn that his hands tremor, and can go numb. Again y'all, mother of the year am I! No really, the liver dude told me early on not to beat myself up and not to get mad at the doctors. Again, we didn't know what we didn't know. There was no history to tell us that he had an issue until that day.
You never know where your endpoint is. We are blessed with whatever time we have here on Earth. Blessed to wander and wonder about what this life is for. Think about why we are here, do for others and be love and light. My boy and I have a new leash on this. For me it has driven me into action to create the life I want. For him, it has given him the will and strength to stand up and say, just watch me. He has learned to speak out for himself, yes even against his mother's wishes sometimes. However, he does it with respect and to try and share the view from his corner of the world.
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