I could sit here and tell you how everything is going good, nothing to worry about, it's all to be expected, another part of "the experience".........
Which would not be false. It wouldn't be the whole story. My perceptions are so not normal. I've watched Gregory go through the sickest sick you could ever imagine. I need to ctrl-alt-delete my "is my kid sick" meter. He is alot sicker than I gave him credit for. I really thought that Monday we would come in for some IV Fluids and go back home. So not the case. He's pretty darn sick.
This morning's counts: Hematocrit ~ 33, Platelets ~ 56, ANC ~ 1275, Weight ~ 13.9
His cultures that were taken yesterday at 4:00pm still showed positive for Enterococcus. Which is the E in VRE. Vancomycin-Resistant Enterococcus. It did not mean that he has VRE, it just freaked me out. The sensitivities came back tonight and he DOES NOT have VRE. Whew! Dodged a bullet on that one. I should probably state the obvious. Gregory has a line infection. *crap* Which means the infection came from his central line. Basically a dirty access. The infection entered through a not clean enough access of his central line. Which, quite frankly, can happen at anytime. I've already run the gauntlet of blaming myself. While I have been accessing his line daily (except for when we are in the hospital), since the first of March. Except I've been hooking IV fluids up since Sunday the 2nd of August. It's an automatic default for me to question if the infection came from ME not being clean enough in my accessing him. *shrug* There really is no way to know where it came from. It just means that I am going to be hypervigilant, from this point forward.
They did a Vanco level (where they draw a blood sample to determine if his dose of Vanco is at a theraputic level.) It was LOW. They tripled the dose and I am hoping that this increased dose will clear the infection. If the infection does not clear soon, don't know what the exact time line on this is, then we start to discuss removing his Central Line. The bacteria can get stuck to the walls of his central line, which means we cannot get rid of it. I really, really, really, really, really hope this does not happen. It would mean placement of another line and he already has had two sperate lines placed. With the second placement not being a very smooth surgery. I am also afraid that they won't place another line and go with a PIC line. *shudder* He is too young to have to deal with a PIC line and/or repeated needle sticks. Thanks, but no thanks. We will deal with this when we get there, but I am trying to prepare myself to advocate for a new line placement.
Today was rough. Gregory had his first headache. So bad that he was clutching his head, saying "ow" and crying. It would come in waves. He would be OK for a few minutes and then have an attack of pain. He is also having escating gut pain. His Bk Virus is also flaring. His temp is great, though. Another thing to note, his blood pressures have been low. Not too low, just significanltly lower than his normal. Same with his heartrate. His heart rate is usually around 120-130 and it has been around 85-90. He has also been really clammy to the touch. The antibiotics are really doing a number on the bacteria and they are releasing all kinds of toxins in his system and he is stuggling to keep up. We gave him a dose of Oxycodone at 3:00 and he has been asleep ever since. With occasional verbal outbursters in his sleep. I'm hoping that he snoozes until morning. He really needs to get a solid nights sleep.
Not that I did not know he was fragile, but this has been a real wake up call in terms of how fragile he really is. How careful we REALLY need to be. There is absolutely no room to screw this up. My heart is telling me to lock him up in a plastic bubble for the next year and completely shut us off from the outside world. In reality it is not possible, except I am going to try my damnedest to make it happen. This new reality that we are living in is so isolating. Isolating from the world of "my kid doesn't have cancer". 'Cause you really can't understand or get it, until you live it. I used to be the type of person who would see garbage, stuff in general, on the floor/ground and happily put it in the garbage or put it away. I don't touch walls, railings, counter tops, door handles, pretty much anything without the thought of "where's the nearest sink and/or anti-bacterial gel". I don't buy any food anymore that is not individually wrapped. For Gregory or myself. If I hear someone cough/sneeze I visibly flinch and search for the location. It's a weird, weird world.
In fact, they tested his immunoglobulin G (IgG) levels and they are low. Low enough that they will be giving him IV IgG. I'm not well versed in what this is or how it is administered. More on that later.
Well, it's about time for midnight vitals and I need to comfort Gregory through them. I have a bunch more "stuff" floating around that I would like to get down. Maybe tomorrow. I will see how it all goes. 'til later, gotta jet.
Which would not be false. It wouldn't be the whole story. My perceptions are so not normal. I've watched Gregory go through the sickest sick you could ever imagine. I need to ctrl-alt-delete my "is my kid sick" meter. He is alot sicker than I gave him credit for. I really thought that Monday we would come in for some IV Fluids and go back home. So not the case. He's pretty darn sick.
This morning's counts: Hematocrit ~ 33, Platelets ~ 56, ANC ~ 1275, Weight ~ 13.9
His cultures that were taken yesterday at 4:00pm still showed positive for Enterococcus. Which is the E in VRE. Vancomycin-Resistant Enterococcus. It did not mean that he has VRE, it just freaked me out. The sensitivities came back tonight and he DOES NOT have VRE. Whew! Dodged a bullet on that one. I should probably state the obvious. Gregory has a line infection. *crap* Which means the infection came from his central line. Basically a dirty access. The infection entered through a not clean enough access of his central line. Which, quite frankly, can happen at anytime. I've already run the gauntlet of blaming myself. While I have been accessing his line daily (except for when we are in the hospital), since the first of March. Except I've been hooking IV fluids up since Sunday the 2nd of August. It's an automatic default for me to question if the infection came from ME not being clean enough in my accessing him. *shrug* There really is no way to know where it came from. It just means that I am going to be hypervigilant, from this point forward.
They did a Vanco level (where they draw a blood sample to determine if his dose of Vanco is at a theraputic level.) It was LOW. They tripled the dose and I am hoping that this increased dose will clear the infection. If the infection does not clear soon, don't know what the exact time line on this is, then we start to discuss removing his Central Line. The bacteria can get stuck to the walls of his central line, which means we cannot get rid of it. I really, really, really, really, really hope this does not happen. It would mean placement of another line and he already has had two sperate lines placed. With the second placement not being a very smooth surgery. I am also afraid that they won't place another line and go with a PIC line. *shudder* He is too young to have to deal with a PIC line and/or repeated needle sticks. Thanks, but no thanks. We will deal with this when we get there, but I am trying to prepare myself to advocate for a new line placement.
Today was rough. Gregory had his first headache. So bad that he was clutching his head, saying "ow" and crying. It would come in waves. He would be OK for a few minutes and then have an attack of pain. He is also having escating gut pain. His Bk Virus is also flaring. His temp is great, though. Another thing to note, his blood pressures have been low. Not too low, just significanltly lower than his normal. Same with his heartrate. His heart rate is usually around 120-130 and it has been around 85-90. He has also been really clammy to the touch. The antibiotics are really doing a number on the bacteria and they are releasing all kinds of toxins in his system and he is stuggling to keep up. We gave him a dose of Oxycodone at 3:00 and he has been asleep ever since. With occasional verbal outbursters in his sleep. I'm hoping that he snoozes until morning. He really needs to get a solid nights sleep.
Not that I did not know he was fragile, but this has been a real wake up call in terms of how fragile he really is. How careful we REALLY need to be. There is absolutely no room to screw this up. My heart is telling me to lock him up in a plastic bubble for the next year and completely shut us off from the outside world. In reality it is not possible, except I am going to try my damnedest to make it happen. This new reality that we are living in is so isolating. Isolating from the world of "my kid doesn't have cancer". 'Cause you really can't understand or get it, until you live it. I used to be the type of person who would see garbage, stuff in general, on the floor/ground and happily put it in the garbage or put it away. I don't touch walls, railings, counter tops, door handles, pretty much anything without the thought of "where's the nearest sink and/or anti-bacterial gel". I don't buy any food anymore that is not individually wrapped. For Gregory or myself. If I hear someone cough/sneeze I visibly flinch and search for the location. It's a weird, weird world.
In fact, they tested his immunoglobulin G (IgG) levels and they are low. Low enough that they will be giving him IV IgG. I'm not well versed in what this is or how it is administered. More on that later.
Well, it's about time for midnight vitals and I need to comfort Gregory through them. I have a bunch more "stuff" floating around that I would like to get down. Maybe tomorrow. I will see how it all goes. 'til later, gotta jet.
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