This might be a little rambly. Ok, a lot.
I seriously dislike my neurosurgeon. I mean S.E.R.I.O.U.S.L.Y. dislike him. More on that later.
The infection Shawn has is a staph bacteria that attaches itself to plastics. We think that the infection was found early (no thanks to them) and hadn't had a chance to establish itself throughout his body. Every culture taken since his shunt was removed has been negative. Still the course of treatment is 10-14 days of IV antibiotics (vanco.mycin) and an oral antibiotic (rifam.pin, which has the great side effect of turning his mouth, poop, and pee a nice shade of orange).
The 10-14 days is what threw me over the edge. Initially, we were told that he would need 7-10 days of IV antibiotics. That would have meant that he would have finished 10 days on Saturday, have his shunt surgery that day, and go home on Sunday. We asked the pediatrician team and the neurosurgeon team about this. The peds team said 10-14 days, the doctor from the neuro team said that it was only 7-10 days.
Ok. I believe the neurosurgeon, seeing how this was her specialty.
There was also much discussion over the weekend about when the 7-10 (or 10-14) days would begin. It was decided, again by the neurosurgeon, that the timeline started when the vanco.mycin started. The peds team said that it didn't start until the shunt was removed.
Ok. I believed the neurosurgeon again...it still is supposed to be her specialty.
Fast forward to Monday morning at 6 freaking 30 in the morning. I was in the room with Shawn and Isaac was out in the parking lot sleeping in his car. (remember, we only have a tiny area to be in which isn't hardly big enough for us to sit together much less sleep)
Anyway, I was in the room with Shawn feeding him when the team of four doctors came in: the asshole, the head of neurology, the attending, and the lowly resident. The asshole is somehow above the attending but below the head in rank.
I asked what the treatment plan was going to be. Asshole starts off by saying that he has 14 days of antibiotics to complete and goes on to say that he hopes we can get out of there by the end of the month. WTF? Starting when the shunt was removed. I was like, I was told 7-10 days starting when he started the antibiotic. I was so upset and instantly mad.
Now, I still don't think that I was inappropriate with this next part, but here is where it went bad...
I tried to get the asshole to tell me what they were looking for to determine when things would be done. I was looking for some sort of explanation as to why it went from 7-10 days to definitely 14 days to he might go home by the end of the month. He wouldn't address my questions and kept trying to avoid answering them. I was getting more and more frustrated. He brought up that I had told one of the neurosurgeon (the resident) that I felt that Shawn had at least two surgeries that he shouldn't have had and that I had lost my confidence in the "team". I agreed that I didn't have any confidence in them, and that I thought they should have been able to help Shawn, and that I didn't think that we should have had to go there for FIVE surgeries in a little over a month, and that we shouldn't have had to return there every FREAKING weekend. I told him that I was upset that the time they FINALLY get the shunt working correctly they give him an infection and have to pull the WHOLE FREAKING THING OUT!!! His response was that Shawn is a difficult case. That made me even madder. I responded by saying that I was tired of having them say he was difficult and mentioned something about how he didn't give himself an infection.
Now, I was very angry, but I don't think that I ever was out of line. I was not going to stand by and let them continue to think of my baby as some sort of science project, but other than saying I had no confidence in them, I said nothing more than I felt they should have been able to help Shawn by now.
The asshole's response, while I was talking, was that he was happy to move us to another hospital.
Oh, that is when the world went dark. If I hadn't have had Shawn, there is no telling what I would have done. At that point, I got up, put Shawn back in his crib, and it was on.
I. Was. Livid.
We all knew that there was no way Shawn could go anywhere. First, his shunt is externalized, meaning he has a catheter coming out of his head so that extra CFS fluid can drain out of his head. There is a high infection risk from this alone. There is also a lot of technical stuff that has to happen because of this. There is no way that Shawn can maintain the pressure in his head on his own because he has the catheter. The solution to that is to level the drain to his head so that it mimics the pressure he would get if he had the shunt. If Shawn moves, the drain has to be re leveled to keep the pressure the same. If the drain is too high, it won't let the fluid drain the way it should and extra pressure would build in his head (too much pressure could lead to brain damage). Too low, and too much fluid drains from his head and that could also lead to brain damage. It is a delicate dance we continue to play all day long.
How dare he say that when he knows that there is NOWHERE we could go and NOTHING we could do.
No other surgeon would touch him in the middle of treatment anyway. They wouldn't want to be connected to the possible malpractice of another surgeon.
The head neurosurgeon stepped in at this point and tried to diffuse the situation by answering some of my questions. He let me know that they wanted to see his fluid come back negative for seven days before they would put the shunt back in. He said that the seven days puts us to Saturday, and that would mean surgery to replace the shunt on Monday. We could leave on Tuesday if all went well.
How hard was that.
Asshole piped in again and said we weren't to talk to the pediatrician team about Shawn's shunt. He was going to personally chastise them for giving us the wrong information, blah, blah, blah.
I told him that it wasn't the peds team that gave us the misinformation--it was his own (and that doctor never said a word nor did I call her out on it)--I know for a fact because we had been taking notes on what the doctors said. He just went on about how he was going to talk to them and other such crap.
The whole exchange lasted no more than 5-7 minutes, tops. It seemed like an eternity.
The pediatrician attending came in about 30 minutes later. I explained to her what happened. She didn't say anything negative about the asshole, but I could tell that this was probably not the first time they had had trouble like this happen with him. She gave me the name of the patient advocate because she agreed that there is no way he should have said anything about moving Shawn in the condition he is in...it would be highly dangerous.
SO, (man I have a lot to say about all of this), the next day, the neuro team comes in during rounds without the asshole! Ha. Made me laugh. He didn't come in the next day during rounds either, but he did come in later for all of two seconds to tell me the fluid cultures were still clear.
Because of all of this, it has been decided that only an attending pediatrician can treat us. The residents are not allowed to give us any information about treatment or anything else. The nurses now are out of answers, too. Not sure if this is to placate the asshole or to keep me from complaining about something else, although I really don't have anything negative to say about anyone at the hospital except the asshole. I do know that it makes them nervous now that I have my trusty journal out so I can write down what the doctors say while they talk to me.
I am not a difficult person to get along with. I don't like to argue even. I prefer to make nice with everyone and not cause any waves. But come on! At least tell me what you are planning and why you are thinking that way when I ask about it. It makes me nervous when you can't do that!
I know that maybe I am an unusual parent in this way. I have been very clear about this, though, and have said that I do best when they are just upfront with me. I really don't have a problem with what they do as long as they can tell me why.
Why are you giving him this new antibiotic that I haven't heard of before? doesn't seem like an unusual thing to ask. Who ordered it? What are the side effects? Shouldn't everyone ask things like that? People are not perfect. I would never forgive myself if I happened to let something like that get by me and Shawn was affected negatively. It makes me nervous when that makes people nervous.
Because of that, I have been label difficult again.
Oh well. Fix my baby, and you won't have to deal with me anymore.
P.S. Please forgive me if I don't leave comments for a few days. I do still read, but well, you know how it is. Hugs.
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