I know it is bad to go into something with lofty expectations, but in this instance I just can't help myself. Jackson has a Pulmonary appointment this afternoon which I expect to either go very well and they tell us he can start eating (!) or it will go very poorly in which case they say they want to do another bronchoscopy. Either way is big. Big good and big bad, but even big bad would be better than leaving with a prescription for another healthy dose of "Let's-wait-and-see".
Think happy thoughts and channel all your good karma our way.
Thursday, May 31, 2007
Wednesday, May 9, 2007
WARNING: This is a Rant.
I warn those of you reading this particular posting. This is a rant. A short, brief rant which won't apply to 99.9% of the people I know. But there's always that .1% who have to go ahead and piss me off.
Yesterday was a bad day. A very bad day. On top of the daily grind that makes up so much of everyone's days including taking Jack back to Hopkins to give nine vials of blood for yet more testing, yesterday I had the pleasure of dealing with my co-workers. I should make it clear that most of my co-workers are perfectly amiable, understanding and empathetic people. Thankfully this includes my boss.
A few of my co-workers however, are not so understanding, and are apparently a bit envious of my situation. How is that possible? Why in the world would anyone be envious that I have a chronically ill child who requires a great deal of medical attention? That I am forced to work from home many evenings and weekends because I never know when I am going to need the extra time? Or could it be that I have now aquired quite the vocabulary of medical lingo? Maybe my stunning good looks and charming wit? Who knows when there is so much to choose from?
We all know people like this, and most of us probably have to deal with them on a daily basis. I can cope most days. But then there are days, when by virtue of the rumor mill or a particularly conciensious co-worker, I hear that things are said about me, my work, my children, my "situaiton" to other people in and out of my department. Statements which may or may not be true, but are absolutely none of anyone else's business. I have been told that statements like "It's her fault Jackson has all those health issues because ....." have been made to multiple people. No really. Someone has been so bold as to say that. Again most days I can cope but yesterday it really set me off. Not that I can do much about it. I could choose to stoop to that level and engage in some sort of tirade but I know that won't help nor will it change the behavior in question. So I choose to ignore the source, post my rant and move on.
So there it is. Rant.
Yesterday was a bad day. A very bad day. On top of the daily grind that makes up so much of everyone's days including taking Jack back to Hopkins to give nine vials of blood for yet more testing, yesterday I had the pleasure of dealing with my co-workers. I should make it clear that most of my co-workers are perfectly amiable, understanding and empathetic people. Thankfully this includes my boss.
A few of my co-workers however, are not so understanding, and are apparently a bit envious of my situation. How is that possible? Why in the world would anyone be envious that I have a chronically ill child who requires a great deal of medical attention? That I am forced to work from home many evenings and weekends because I never know when I am going to need the extra time? Or could it be that I have now aquired quite the vocabulary of medical lingo? Maybe my stunning good looks and charming wit? Who knows when there is so much to choose from?
We all know people like this, and most of us probably have to deal with them on a daily basis. I can cope most days. But then there are days, when by virtue of the rumor mill or a particularly conciensious co-worker, I hear that things are said about me, my work, my children, my "situaiton" to other people in and out of my department. Statements which may or may not be true, but are absolutely none of anyone else's business. I have been told that statements like "It's her fault Jackson has all those health issues because ....." have been made to multiple people. No really. Someone has been so bold as to say that. Again most days I can cope but yesterday it really set me off. Not that I can do much about it. I could choose to stoop to that level and engage in some sort of tirade but I know that won't help nor will it change the behavior in question. So I choose to ignore the source, post my rant and move on.
So there it is. Rant.
Tuesday, May 8, 2007
Status Quo
There was a time, not so long ago, that maintaining a certain level of healthiness would have made me happy. But now, as we emerge from the flu and virus season victorious, I ask, what's next? As in what can we do next? When can he start eating? When can he stop taking so many meds? What testing should we look into? What's the next step with his speech and language therapy? Obviously there are a lot of questions...
So I try. I try to talk to the Neurologist about testing. I try to get Pulmonary's recommendation on advancing his feeds. I try to get GI's input regarding food allergies. I try to get his Swallow Specialist to weigh in regarding his aspiration or lack there of. And I try to get them all to talk to each other, since at most visits it ends with a "Let's see what _______ (fill in any specialist) has to say."
This my friends is not an easy task. First, and foremost, just getting in touch with one doctor is darn near impossible. Multiple phone calls and messages are required. Then when you do actually speak to one, the conversation is usually rushed and ends with the above mentioned phrase. Oy vey! So getting multiple physicians to communicate with each other is like requesting an audience with the Pope. In fact I think my odds are actually better with the Pope.
And some may ask, why so urgent? Well, since we are clear of the flu and virus season, NOW is the time to try advancing Jackson's feedings, move to more solid foods, and away from tube feeding. The clock is ticking. We have exactly 4 1/2 months to accomplish this before the next flu and virus season and that's if we start TODAY. So let's take two weeks out of the equation which leaves us with 4 months. That's not much time since it seems there is yet more testing to performed before anyone recommends solid foods.
So while status quo was an acceptable and even welcomed level during the nasty winter months, it now quite frankly has me a bit wound up in sixes and sevens.
So I try. I try to talk to the Neurologist about testing. I try to get Pulmonary's recommendation on advancing his feeds. I try to get GI's input regarding food allergies. I try to get his Swallow Specialist to weigh in regarding his aspiration or lack there of. And I try to get them all to talk to each other, since at most visits it ends with a "Let's see what _______ (fill in any specialist) has to say."
This my friends is not an easy task. First, and foremost, just getting in touch with one doctor is darn near impossible. Multiple phone calls and messages are required. Then when you do actually speak to one, the conversation is usually rushed and ends with the above mentioned phrase. Oy vey! So getting multiple physicians to communicate with each other is like requesting an audience with the Pope. In fact I think my odds are actually better with the Pope.
And some may ask, why so urgent? Well, since we are clear of the flu and virus season, NOW is the time to try advancing Jackson's feedings, move to more solid foods, and away from tube feeding. The clock is ticking. We have exactly 4 1/2 months to accomplish this before the next flu and virus season and that's if we start TODAY. So let's take two weeks out of the equation which leaves us with 4 months. That's not much time since it seems there is yet more testing to performed before anyone recommends solid foods.
So while status quo was an acceptable and even welcomed level during the nasty winter months, it now quite frankly has me a bit wound up in sixes and sevens.
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