Questions Answered
I realized that my last post included a lot of information and probably raised a lot of questions - as it did for us as well. So I wanted to share some of the responses we have got to help everyone better understand what's going on. So here goes...
1. Did they not do all of this testing for staph, MRSA and meningitis when we first came back in to the hospital with the high fever and infection?
The answer to this is yes - they swabbed his nose for MRSA, the infectious diseases team did both a physical assessment as well as drew many tubes of blood and his neurosurgeon did a spinal tap. Through all of those testings - we confirmed that he didn't have meningitis or an infection in his spinal column or fluid leading up to his brain - thank God. All of the bacterial cultures also came back negative at the time. Ok...so why now - 9 days he's been on IV antibiotics - and strong ones - why is the culture now growing? This was of course my first question and the answer is because the actual infection was in the wound - the one place that his neurosurgeon wasn't comfortable tapping in to again since we had already caused enough trauma to his back through the surgery and the spinal tap. A week ago this was infectious diseases recommendation was to go back into the wound as they had exhausted all options but our surgeon wasn't comfortable with that and we stand behind her decision 100%. When his back opened up and drained on Wednesday, we were finally able to get that sample we desperately needed to confirm that indeed that's where it seems that the infection is originating.
2. Can anyone catch anything from him?
As worried as I am about him my mind immediately went to Ceej and Mia because Max was home for about 36 hours before we ended up back in the ER with the high fever. I was terrified thinking oh my God I'm going to have 3 babies in the hospital and then I started thinking - no way would they tell us that the cultures are growing and then allow me to take him out and about in the hospital if they were in the least bit worried that he could give anything to anyone. There are many babies on the floor who are on isolation where nurses have to go in gowned up with masks and gloves. They can be in isolation for something as "simple" as a cold because bottom line if you are in here your immune system is compromised so anything they can do to stop the spreading of anything like that. So I knew it wasn't something I needed to be worried about but I asked the experts - the infectious diseases team - and they said absolutely nothing to worry about. He's not going to cough it on anyone or anything like that. To consider it as a nasty skin infection.
3. What's causing all of this? I thought it was supposed to be a "simple" and straightforward surgery?
It was. As a matter of fact our doc told us if you have to have a tethered cord Max's is the easiest kind to repair and the best to have. The surgery went off without a hitch, she was very pleased and happy and said it couldn't have went better. Everything once she was in there was just as she expected it to be and she said the likelyhood of retethering was somewhere between 3-10% based upon which studies you believe in. Couldn't have went better. So why are we still in the hospital 16 days later? The answer is luck of the draw. Hospitals are not the cleanest place as we all know. And whenever you have surgery or an IV or anything like that your risk of infection is increased so it literally seems to be bad luck.
.
4. So if the Bactrim is a wide spectrum antibiotic that is supposed to treat all of these infections why after 8 solid days of IV antibiotics are the gram stain cultures showing staph bugs still? Doesn't make sense right?
This was my first question and the answer I got was that they of course can be pesky and aggressive and it takes a while for the antibiotics to work and kill the infection entirely so it's not necessarily surprising that there is still something there.
5. What is the prognosis and next steps?
So every single time something has come up I'm in tears and just want the doctor to tell me first off that he's going to be ok and then tell me the plan and the new information. It's like my mind has a brain block until I hear those words. So he is going to be ok it just means that he will likely be on the antibiotics for a longer period of time.
6. Why did he need a picc line? Would oral antibiotics work?
The answer is yes they would have - if he weren't such a stinker. He's like his big brother Ceej and he refuses to take any oral meds. He literally is incapable of keeping them down. If we are successful and get him to actually take the full dose (which of the Bactrim was huge) - within 5 minutes he vomits it all back up - thus the necessity of the picc line as it is crucial he get every single drop of antibiotics that he needs.
So I think this should answer many of the questions I've gotten and that we ourselves have has but as always we are open books so ask away if you are curious or concerned about anything at all.
XOXO
K
1. Did they not do all of this testing for staph, MRSA and meningitis when we first came back in to the hospital with the high fever and infection?
The answer to this is yes - they swabbed his nose for MRSA, the infectious diseases team did both a physical assessment as well as drew many tubes of blood and his neurosurgeon did a spinal tap. Through all of those testings - we confirmed that he didn't have meningitis or an infection in his spinal column or fluid leading up to his brain - thank God. All of the bacterial cultures also came back negative at the time. Ok...so why now - 9 days he's been on IV antibiotics - and strong ones - why is the culture now growing? This was of course my first question and the answer is because the actual infection was in the wound - the one place that his neurosurgeon wasn't comfortable tapping in to again since we had already caused enough trauma to his back through the surgery and the spinal tap. A week ago this was infectious diseases recommendation was to go back into the wound as they had exhausted all options but our surgeon wasn't comfortable with that and we stand behind her decision 100%. When his back opened up and drained on Wednesday, we were finally able to get that sample we desperately needed to confirm that indeed that's where it seems that the infection is originating.
2. Can anyone catch anything from him?
As worried as I am about him my mind immediately went to Ceej and Mia because Max was home for about 36 hours before we ended up back in the ER with the high fever. I was terrified thinking oh my God I'm going to have 3 babies in the hospital and then I started thinking - no way would they tell us that the cultures are growing and then allow me to take him out and about in the hospital if they were in the least bit worried that he could give anything to anyone. There are many babies on the floor who are on isolation where nurses have to go in gowned up with masks and gloves. They can be in isolation for something as "simple" as a cold because bottom line if you are in here your immune system is compromised so anything they can do to stop the spreading of anything like that. So I knew it wasn't something I needed to be worried about but I asked the experts - the infectious diseases team - and they said absolutely nothing to worry about. He's not going to cough it on anyone or anything like that. To consider it as a nasty skin infection.
3. What's causing all of this? I thought it was supposed to be a "simple" and straightforward surgery?
It was. As a matter of fact our doc told us if you have to have a tethered cord Max's is the easiest kind to repair and the best to have. The surgery went off without a hitch, she was very pleased and happy and said it couldn't have went better. Everything once she was in there was just as she expected it to be and she said the likelyhood of retethering was somewhere between 3-10% based upon which studies you believe in. Couldn't have went better. So why are we still in the hospital 16 days later? The answer is luck of the draw. Hospitals are not the cleanest place as we all know. And whenever you have surgery or an IV or anything like that your risk of infection is increased so it literally seems to be bad luck.
.
4. So if the Bactrim is a wide spectrum antibiotic that is supposed to treat all of these infections why after 8 solid days of IV antibiotics are the gram stain cultures showing staph bugs still? Doesn't make sense right?
This was my first question and the answer I got was that they of course can be pesky and aggressive and it takes a while for the antibiotics to work and kill the infection entirely so it's not necessarily surprising that there is still something there.
5. What is the prognosis and next steps?
So every single time something has come up I'm in tears and just want the doctor to tell me first off that he's going to be ok and then tell me the plan and the new information. It's like my mind has a brain block until I hear those words. So he is going to be ok it just means that he will likely be on the antibiotics for a longer period of time.
6. Why did he need a picc line? Would oral antibiotics work?
The answer is yes they would have - if he weren't such a stinker. He's like his big brother Ceej and he refuses to take any oral meds. He literally is incapable of keeping them down. If we are successful and get him to actually take the full dose (which of the Bactrim was huge) - within 5 minutes he vomits it all back up - thus the necessity of the picc line as it is crucial he get every single drop of antibiotics that he needs.
So I think this should answer many of the questions I've gotten and that we ourselves have has but as always we are open books so ask away if you are curious or concerned about anything at all.
XOXO
K
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