I really wish our lives were boring enough to be able to cover events in a single post, but, alas, that is not the case. Have been needing to split posts into multiple parts a lot lately and probably will for some time to come…
When I left off last, Em had had a lumbar puncture and, although I asked for it and the doctor ordered it, the concurrent blood patch was not done. I asked for the blood patch to prevent the very likely problems that were going to occur after the LP – a blood patch simply helps stop a CSF leak from the LP site.
Em did fine after the LP, in fact, her head was pressure free for the first time in a long time. But, unsurprisingly, she started having problems by that evening. Her back was extremely painful and she was enduring a spinal headache – low pressure. She also appeared to have developed another leak in that same ear where the first presumed leak was and that probably added to the low pressure issue. Sitting up was painful, so she laid flat for most of the weekend. We dutifully waited out that time (as ordered) to get through the window until she got to the point where she was either willing to go to the ER or until the doctors would take her seriously.
Monday morning (the 18th) Radiology called to check on her and were concerned with her symptoms and told us to call the neurologist. I did and played phone tag with them for two days. When I finally talked to them, they said to either go to the ER or call the pain doctor. I called the pain doctor and was told he was not in and they had no answers for us.
So, I informed a very reluctant and miserable Emily that we had to go to the ER. Have you ever felt too bad to go to the ER?? (I know many of you know how that is.) Well, that is where Emily was Tuesday afternoon.
When we got to the ER, they took her seriously but likely because we were able to say the neurologist sent us. Which is why I waited until we had their word to go: it can get ugly when we don’t jump through that hoop. Anyway, they took her seriously and quickly got her into a room and got an IV and pain meds started.
Here, it is probably worth mentioning the thought process of the other parental unit in this situation. You know I was angry and frustrated. My hubby was livid that they did not do the blood patch along with the LP and forced us to the ER resulting in yet another bill. So, he was already angry that we had to drag Emily out to the ER, in the bitter cold, on snowy roads, when it likely could have been prevented.
The ER doc walked into this minefield when she came in and said Em needed a blood patch but…
Well, it isn’t considered an emergency procedure so if there were no anesthesiologists available, we would have to just go home and schedule it for the next day. You can imagine how this went over with us.
Fortunately, the anesthesiologist on call was willing to come back in even though she had just gone home. I appreciated that – giving credit where credit is due.
When she got around to doing the procedure, she snapped on the gloves that were in the epidural kit that had been sent up. Unfortunately, those gloves were latex. You may remember that Emily is severely allergic to latex, to the point of if one glove was laying in the corner or if latex had been used in that room for the previous patient, she will have a reaction. Air born latex particles will cause a serious reaction very quickly. I mean, no, she hasn’t died yet from it, but she has taken Benedryl many times and there have been times it has been scary. I would really prefer we not have to prove how bad it is through her death.
So, Em is sitting on the edge of the bed, in pain, half naked, prepped for the procedure, scared out of her mind because she hates needles and vividly remembers how much the LP hurt and has been told this is going to be the same. I am not paying attention to anything but Emily at that point. I am in front of her holding her up, because I know she cannot hold herself up. She looks at me and asks if those gloves are latex. I look over her shoulder and ask, mostly to humor her, because they won’t make that kind of mistake, right?
When I ask about the gloves, the doctor stops in horror and says, oh crap. (Or something like that. My mind was racing at that point but that was the general idea.) And rips them off, apologizing. I look back at Emily and ask if she is ok. She says, “Not really.” So I tell the doctor she needs Benedryl. She assures me she didn’t touch her with the gloves and was horrified to find out that just taking them out of the package was enough to causes a reaction. So, she wraps everything up in the now unusable kit and rushes it out the door and gets the nurse, who brings in Benedryl. (Funny story, she brings it in with a syringe and Emily, in the midst of an allergic reaction, is like, hey, I have my own Benedryl in my bag, no need to give me a shot. I am good. Needless to say she was relieved to find it was going to go directly into her IV, although she was understandably suspicious until it was done.)
At this point, I am past livid. Especially when I realize they hadn’t put an allergy bracelet on her when they checked her in. Would it have made the difference? Honestly, I doubt it. But that isn’t the point, is it? And why does this ill child have to save her own life?
So, they have to order a new kit and leave her sitting, miserable, freezing, scared, and feeling like they had just tried to kill her, for far too long. Finally, they get the new kit and the doctor and the phlebotomist both come in. The phlebotomist sort of joked that the hospital is a latex free facility and they must have found the only pair of latex gloves in the place. I call BS on that because I know better. Their system failed at every step of the way and could have killed her. This is being addressed.
The procedure was, well, not fun. The doctor was trying to get her numb enough to do the procedure but never really succeeded. They took a huge amount of blood (20 mls) pretty quickly, too quickly for her. If I had not been holding her up, she would have been on the floor. You can’t take that amount of blood from a POTS patient without some effect. I thought she needed more fluids afterwards but she just wanted to go home so I didn’t push that issue, although I wish I had.
They gave her time to rest after the procedure and then basically kicked us out. I asked for them to do something for her pain, which was now as bad or worse than it was when we arrived, because we had a 45 minute ride home and she was in agony. They had given her morphine, a couple hours before and were not inclined to give her anything else. They offered her a pain pill, half of what she already takes. The doctor came in and explained since she didn’t know exactly what was going on, she didn’t want to throw narcotics at Emily, which she ironically did anyway. She also implied that we would be violating our contract with the pain doctor if we pushed the issue.
In the end, we had a child who was in more pain than she was to begin with, making a liar out of me. I promised her they would help, that they would treat her pain. Once again, they have bolstered the wall between this ill child and the care she needs by showing me to be a liar and refusing to take her seriously.
These experiences leave us battered and bruised, especially when they should have been prevented. There will be more to this story: we are not going to accept this kind of treatment without making some waves. The latex exposure is huge. Huge. That needs to be addressed. Because my husband works at this hospital, our insurance forces us to do everything possible there. If her specialists at Cincy order blood work or an MRI, can’t do it there, have to go to our local hospital. If she needs to go to the ER, we have to go there. But, they clearly are not providing a safe place for her to be treated. So, yes, this one is a hill worth dying on. They either need to get their act together or allow us to take her somewhere where she will be safe.
We also are going to fight the policy that prevented the blood patch being done along with the LP. I am not stupid – I get that the two procedures are done by different departments and it is complicated, but are you telling me it is impossible to schedule this? Seriously.
At best, this is a situation where the right hand doesn’t know what the left hand is doing. At worst, well, I hate to speculate about profit, but there it is. Then there is the fact that her doctor ordered the blood patch. Ordered it. I was not aware that a doctor’s order could be viewed as a suggestion. If they couldn’t do it, it was on them to contact him so he was aware. They did not call him, neither before or after, I have been told by him personally. Again, their system failed this child at every point.
So, we are beyond angry. There is absolutely no reason any of this needed to happen. To be told they can’t do the blood patch along with the LP and that we just have to go to the ER if there is a problem, only to find out the blood patch is not an emergency procedure, is mind boggling. To be told by the pain doctor’s office they have no answers for us. The whole thing is a nightmare, to be honest.
On the upside, I think the blood patch did help. Her pressure is normalizing (read: getting high again) and she is trying to manage the increasing pressure with her Diamox but not taking too much so it dips down into low pressure. That is a juggling act to be sure. The procedure did not help her back pain, but that is not too surprising. She is still in enormous pain – every movement is painful, but at least the blood patch wasn’t pointless.
We were able to get in to see the neurologist on Friday. That was a minor miracle. And there are other things going on as well, so I will be posting about all of that, trying to catch up. And, with any luck, there will be more to report on how our complaints are received. I don’t want anybody fired, although Emily and I have thought it would be useful to make everyone who had a part in the whole latex portion wear a scarlet “A”. I am thinking it would be an effective deterrent, but I suppose I won’t push that since HR might object.
Honestly, I just want to educate the people providing my daughter’s care. I want to help them be better. I want them to take her problems seriously. I want them to take chronic illness and chronic pain patients seriously. I want policy to change – how many people have suffered and had no recourse like we do? It is not ok. I want to help them offer the care my kid needs. But, there are things that need to change and we are going to do our best to see that happen. In the meantime, Emily is slowly recovering – her physical wounds will heal but her emotional ones will take longer, I think.