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Well, Klaw was discharged from the hospital this past Thursday. We spent a long weekend just relaxing around the house and trying to get back to a "normal" schedule. Oddly enough, our happy little wake up at the crack of dawn baby is now a happy little wake up about an hour before the crack of dawn baby. This does not bode well for me!
Many thanks to all of you have kept us in your thoughts & prayers during this stressful time. We have truly been blessed with wonderful friends & family and, of course, a wonderful baby boy.
Monday, September 27, 2010
Tuesday, September 21, 2010
Saturday, September 18, 2010
Salmonella, I hate you...
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Let me start this by clearly stating, "I HATE SALMONELLA!"
So, Klaw's brush with this nasty micro-organism has been a doozy. However, with the exception of this past Sunday, he has maintained his cheery disposition. Chris & I have truly been blessed with an easy-going, personable little baby. His PICC line is in, he is receiving ampicillin every 6 hours, and he is eating well. His stools are almost completely normal again.
Klaw is definitely in the best of hands with Dr. Proud (geneticist), Dr. Matson (infectious diseases), and CHKD. We've hit a few speed bumps with a the sheer lack of knowledge about VLCADD by the regular doctors & residents (it's interesting and a little scary knowing more about a medical condition than the majority of the doctors you encounter). Chris has learned that there is a reason that I ask questions of every doctor/nurse who wants to do anything to Klaw. Trust me, I am NOT the mom you want to cross when it comes to the care of my son. I don't care how many letters you have behind your name, I am not intimidated by you and you will have to justify everything you want to do to my son. We have both learned more about Salmonella than we ever cared to know
So, Salmonella, you are a sneaky little bacteria. We only recently learned just how sneaky you are. First of all, evidently not everyone is even susceptible to salmonella. It requires a specific host and no one is quite sure exactly what makes one person a good host and not the next person. As it was described to us, you could put Klaw in a room full of other babies and some of them would get infected, others not at all. Secondly, people can be infected and be completely asymptomatic. So, a seemingly perfectly healthy person could be walking around with a salmonella infection, spreading it around everywhere they go. There was evidently an observation among preschoolers where they they literally just tested stool samples everyday and salmonella infections went through many of the kids with only a few actually showing symptoms. Scary.
As it stands, all of Klaw's food sources (formula, cereals, etc) have been tested in the lab at CHKD and have come up clean. The formula company is going to test the formula in house, also, just to be sure. Dr. Matson feels that the most likely source of Klaw's infection is from an asymptomatic person handling him or his food. During the week before he came down with symptoms of the salmonella infection, he was around several "new" people outside his regular interactions...including Chris...any of who could have been an asymptomatic vector.
I am not an overprotective mom by any means and I have never wanted to be "that" mom. Kids need to be kids. Klaw is so good with other people and, as long as he can see Chris or me, he's comfortable with just about anyone. However, this has been a horrible reminder that Klaw's medical condition really, truly makes every illness that much more serious than with a "normal" baby. The prospect of flu season is seriously beginning to scare the poop out of me. Chris & I have some serious discussions in our future and some big decisions we have to make about Klaw's exposure to other people. Do they make a human-sized version of this? If so, it's on the Christmas wish list...
So, Klaw's brush with this nasty micro-organism has been a doozy. However, with the exception of this past Sunday, he has maintained his cheery disposition. Chris & I have truly been blessed with an easy-going, personable little baby. His PICC line is in, he is receiving ampicillin every 6 hours, and he is eating well. His stools are almost completely normal again.
Klaw is definitely in the best of hands with Dr. Proud (geneticist), Dr. Matson (infectious diseases), and CHKD. We've hit a few speed bumps with a the sheer lack of knowledge about VLCADD by the regular doctors & residents (it's interesting and a little scary knowing more about a medical condition than the majority of the doctors you encounter). Chris has learned that there is a reason that I ask questions of every doctor/nurse who wants to do anything to Klaw. Trust me, I am NOT the mom you want to cross when it comes to the care of my son. I don't care how many letters you have behind your name, I am not intimidated by you and you will have to justify everything you want to do to my son. We have both learned more about Salmonella than we ever cared to know
So, Salmonella, you are a sneaky little bacteria. We only recently learned just how sneaky you are. First of all, evidently not everyone is even susceptible to salmonella. It requires a specific host and no one is quite sure exactly what makes one person a good host and not the next person. As it was described to us, you could put Klaw in a room full of other babies and some of them would get infected, others not at all. Secondly, people can be infected and be completely asymptomatic. So, a seemingly perfectly healthy person could be walking around with a salmonella infection, spreading it around everywhere they go. There was evidently an observation among preschoolers where they they literally just tested stool samples everyday and salmonella infections went through many of the kids with only a few actually showing symptoms. Scary.
As it stands, all of Klaw's food sources (formula, cereals, etc) have been tested in the lab at CHKD and have come up clean. The formula company is going to test the formula in house, also, just to be sure. Dr. Matson feels that the most likely source of Klaw's infection is from an asymptomatic person handling him or his food. During the week before he came down with symptoms of the salmonella infection, he was around several "new" people outside his regular interactions...including Chris...any of who could have been an asymptomatic vector.
I am not an overprotective mom by any means and I have never wanted to be "that" mom. Kids need to be kids. Klaw is so good with other people and, as long as he can see Chris or me, he's comfortable with just about anyone. However, this has been a horrible reminder that Klaw's medical condition really, truly makes every illness that much more serious than with a "normal" baby. The prospect of flu season is seriously beginning to scare the poop out of me. Chris & I have some serious discussions in our future and some big decisions we have to make about Klaw's exposure to other people. Do they make a human-sized version of this? If so, it's on the Christmas wish list...
Wednesday, September 15, 2010
Monday, September 13, 2010
And we're back...
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...in the hospital. Klaw was readmitted this past Sunday with more of the same symptoms returning with a vengeance. After our geneticist consulted with an (possibly THE) infectious disease specialist, a 10 day course of antibiotics is the decided road to recovery. Salmonella is not typically treated with antibiotics as it may prolong the time that Klaw continues to the shed the virus. However, due to his VLCADD, it is of the utmost importance that we give the Salmonella a final knockout punch. He has to remain on D10 iv fluids and will receive the ampicillin intravenously. They are going to hopefully insert a PICC line tomorrow to make it easier on his little veins.
Klaw is in the absolute best of hands and we are hoping and praying for a speedy recovery (and for the clinicians to stop coming in the room every single time he finally falls asleep. Please.)
Klaw is in the absolute best of hands and we are hoping and praying for a speedy recovery (and for the clinicians to stop coming in the room every single time he finally falls asleep. Please.)
Saturday, September 11, 2010
Technical Difficulties
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Don't know what's going on with the blog layout. I've contacted the host site. Sorry for the weirdness; I'll get it sorted out as quickly as possible or completely change the look of my blog. Again.
Friday, September 10, 2010
Reality Check
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Well, we have been blissfully moving along viewing Klaw's VLCADD as a mere side note in our lives at this point. Alas, that is no more. We just experienced our first hospitalization due to his disorder. Earlier this week, he began having loose, bloody stools and spiked a fever, so we rushed him to the ER. He was, thankfully, acting fine but he was definitely ill with something. For the first time, I had to pull out his ER protocol sheet which lists several blood & urine tests that must be run and the specific IV solution he is to receive even before anything is discovered. Having a baby with a metabolic disorder definitely puts everyone on alert...and ramps up the stress level of the parents...trust me.
The short version is - 3 nights in the hospital on IV fluids. The final fecal cultures popped positive for salmonella, which he could have been exposed to through a variety of sources. He was discharged today and we are finally at home. Through it all, he never lost his pleasant personality and flirted with the nurses, even after they kept sticking him with needles! Most everyone was surprised that this was our first hospital stay, which made me feel good that he has really been healthy thus far. We were also told point blank that if it weren't for his VLCADD, he probably wouldn't have been admitted to begin with. Hopefully, this cold & flu season will not change this too drastically because I have no desire for another stay at Chateau d' CHKD.
I will say this to all of our friends & family, please don't be offended or surprised if Chris & I get hyper-vigilant about hygiene around Klaw. Please keep in mind that common child illnesses can land Klaw in the hospital. If you are sick or may be sick or have been around anyone who has been sick...please don't put Klaw at risk.
The short version is - 3 nights in the hospital on IV fluids. The final fecal cultures popped positive for salmonella, which he could have been exposed to through a variety of sources. He was discharged today and we are finally at home. Through it all, he never lost his pleasant personality and flirted with the nurses, even after they kept sticking him with needles! Most everyone was surprised that this was our first hospital stay, which made me feel good that he has really been healthy thus far. We were also told point blank that if it weren't for his VLCADD, he probably wouldn't have been admitted to begin with. Hopefully, this cold & flu season will not change this too drastically because I have no desire for another stay at Chateau d' CHKD.
I will say this to all of our friends & family, please don't be offended or surprised if Chris & I get hyper-vigilant about hygiene around Klaw. Please keep in mind that common child illnesses can land Klaw in the hospital. If you are sick or may be sick or have been around anyone who has been sick...please don't put Klaw at risk.
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