At some point virtually every person will require the care of a health care specialist. Most only have to interact with these types of doctors a few times throughout their lifetime, but parents with children who are medically complex with severe special needs interact with these types of specialists hundreds of times. In my case, because I have a child with ADNP Syndrome. I have gone periods of time where I have seen specialists and sub-specialists daily. I’ve had great doctors who are kind, compassionate and interested in learning about my sons rare genetic neurodevelopmental disorder and others who have a god complex and should not be working with children at all.
Yesterday at my child’s follow up with the surgeon who saw him in the hospital, I experienced two of the biggest ASSHOLE doctors that I have ever met in my entire life and I am unsure how to even address it – I know it was unprofessional, but was it unethical?
I think that I have reasonable expectations for the way people should be treated by health professionals – before, during and after their treatment. Two of those reasonable expectations are professional and ethical. So let me tell you what has led me to this conundrum.
Last week Tony started to have violent episodes of head shaking in his bed and would not sleep a wink for an entire night and he was holding his head like he was in great pain. I took him to the ER and luckily I had the good sense to record the episodes in bed and the doctor agreed that they looked like abnormal seizure activity, which is common in children with neurological disorders. We thought that he had an ear infection because he was holding his head, however his ears looked perfect. He had no fever and was happy every other second of the day, except when he was having head pain. This doctor referred us to follow up with Tony’s Neurologist but also noticed that he had a small bit of redness on the side of his thumb nail. She said it was called Paronychia, which is an infection that usually gets into a person’s system around a nailbed when there is an injury such as an ingrown hangnail or torn cuticle and it usually becomes a red inflamed blister that needs to be popped. Although I did not know the medical name for this, Tony has had this happen to a nail a handful of times and we treated it and it went away. The ER doctor said that it looked like Tony might have had the beginning of a Paranychia on his thumb and because he puts his hands in his mouth so much, she wrote him an antibiotic prescription.
The very next day Tony’s thumb started swelling up like a balloon. By the end of the day it was red and it was starting to turn green behind the nail. I was told to bring him back to the ER and when I did, we saw a new doctor who immediately told me that this was extremely serious because it was now moving down his finger. She brought in a team and they sedated Tony and drilled a hole through the nail in the hopes of draining some of the infection. She wrote us a prescription for a stronger antibiotic and sent us home with instructions that if he continued to swell, became more red or if he got a fever, that we were instructed to take him to Doernbecher Children’s Hospital because she was concerned that the infection was moving into his tendon.
The next day his finger remained red and swollen and he had a low grade fever so I took him straight to the Doernbecher E/R where they immediately got him started on IV antibiotics. A very nice and informative doctor told me that this kind of infection can quickly move into the tendon or bone and that he was admitting Tony into the hospital for a course of 24 hour IV antibiotics and he wanted to get labs, xrays and have Tony seen by the hand surgeon immediately in case they needed to go in and surgically clean it out.
On day two of our hospital stay, my family came to visit and I went out to lunch with my daughter while my husband and my Mom watched Tony. During that time, the reconstructive hand surgeon Dr. Chang Shiliang came to examine Tony. My husband had her talk to me on the phone since I was the one handling this, and she told me that it did not look like Tony had to have emergency surgery. She said to see if the antibiotics work and that she was going to have one of her team members make a splint to keep Tony’s finger out of his mouth while it healed. She also told me to soak it 4-5 times a day until it looked better.
When I returned back to the hospital there was a doctor there who was trying to build a custom hand splint for Tony. I tried numerous times to tell her that he had a HORRIFIC sensory processing disorder and that he completely wigs out when anything like a bandage is on his arms or legs. She made the first little thumb splint and it took Tony all of about 3 seconds to pull off. She made another one, he pulled it off. She then started molding a larger one that would go down his wrist and arm and he pulled it off. She worked again on a 4th splint, making it larger with more wrapping and more tape and it was now the size of an adult cast. Prior to her finishing, I told her, “the doctor said we had to soak his finger 4-5 times a day, how on earth are we supposed to take that off and on” and she said “just soak it once a day, it will be fine”. (RED FLAG #1) As she finished up this splint I could tell she was frustrated and when he pulled it right off, she got up, cleaned up the mess, told me “you are going to just need to try to keep his finger covered while it heals” and left.
Once we got home, we have been diligent at taking very good care of Tony’s finger. I have soaked it, I have tried to keep small snug bandaids over the finger while it was draining out of the hole, and it has virtually healed up in a matter of days and looks very very good. He has been taking a new antibiotic and has been a very happy boy and his finger was no longer swollen, red or oozing and I was very happy to see be seeing the hand doctor because his fingernail was falling off and I was hoping that she would be able to clip it off since it kept snagging on his clothing, etc. But all and all, it looked like the infection was gone and that it was healing well, so I was very happy.
So yesterday we had our “followup” appointment with the hand surgeon at the plastic surgery office of OHSU. It’s summer vacation so I had to bring along Tony’s twin brother Rocco and sister Sophia. They were sitting on two chairs in the exam room and Tony was right next to them in his stroller. In walks a tall young man who introduces himself as a Resident and an older woman who walks in and immediately after looking at Tony barks at me “I told your husband and your mother that he cannot suck on his thumb”. I explain to her that her staff told me that I just needed to keep it covered until it healed after they failed to build him a splint like she told me they would be doing. As I was explaining to her that I I thought it was healed enough and the fact that Tony kept sucking on the bandaid making it wet and saturated, I thought it would be better to let it get air rather than sitting in a soaking wet bandaid all day, the resident started barking at me, “do you want him to loose his finger”? Not only was I shocked, I could see Rocco and Sophia, who were already unconfortable get very scared. I tried to diffuse the stupid remark from this Doogie-Howser aged doctor by explaining to them both that Tony had a severe sensory processing disorder and that we have been trying for years to keep his fingers out of his mouth and that I have tried rubbing the No-Bite nail product to his entire hand many times and he just gags and keeps on doing it. The Surgeon barked at me again, and told me that I have not been trying hard enough and that I needed to use “chili powder”. She said that to “get a bowl of chili powder and ‘dip’ his entire thumb into the child powder and once he tastes that he won’t put his finger in his mouth”. At that point I tried to explain that I had been working with Tony’s sensory therapist for years over his oral sensory seeking issues and we had tried many things but that she informed me long ago never to use chili powder because it could get in his eyes. I then explained that one of Tony’s sensory ticks is that presses his finger into the corner of his eye all day long because it gives him sensory input (makes you a bit dizzy). In fact, he was doing it as I was telling them this so I was able to directly show them. This doctor then proceeded to tell me that “chili pepper will not hurt his eyes”. I told her that he is cognitively like a one year old and that he isn’t going to understand to keep his fingers of his eyes if he can’t understand to keep his fingers out of his mouth and she said “if you want to stop him from sucking his thumb, you need to dip his entire finger in chili powder and it won’t hurt his eyes”. Before I could even get out a “are you kidding me” the resident chimes in and says “do you not understand that your child is going to loose his finger? “ He goes on to say “I see he is playing on his iPad, do you know how much he needs his thumb to maneuver the iPad? If he loses his thumb he won’t be able to use his iPad and this will affect the qualify of his life quite a bit”. THE SCARE TACTIC, REALLY???? He then proceeded to say “if it doesn’t happen now, it will happen in the future”. At that point, both of my kids eyes are as wide as an owl, Tony is sitting there giggling away listening to music, and my head is about to explode but my kids are in the room so I am TRYING to not go all Honey Badger Crazy Mommy on them so instead calmly say “first, are you saying my child is going to loose his finger with now or is his finger ok now?” They say it looks ok now (but they have not examined his hand). I then say “in a world of no bad ideas, and considering that this child has horrific learning challenges and extreme oral sensory seeking behaviors and other than casting his arms, probably will have a hard time not putting his fingers in his mouth. Couldn’t we just say that perhaps since I now know that this type of infection can be very bad for someone like Tony, but can be treated by an antibiotic…. Couldn’t we just try to be even more hypervigilant and watch his fingers so in the future, if he starts to get any red on a finger around a nail, that I take him straight into the doctors for antibiotics?”. The resident tells me again “if you can’t get him to stop sucking his thumb he is going to loose his finger”. I then say “are you referring to his figure now – because it looks ok to me, is it not ok”? At that point the surgeon walks up to Tony, bends over, looks down at his hand and says “it looks good”. The problem there was that his injured thumb was wrapped around the handle of the iPad and she LOOKED AT THE WRONG FINGER! I was so livid that I was about to go polar but my kids looked petrified so I said something to the lines of “are we all done” but I actually can’t remember what I said but they walked out and no one even gave us any paperwork and they never did an examination on his finger. The moment they left, Rocco who was holding back tears said “is Tony’s finger going to fall off?”
So, my question is, unprofessional or unethical? Between the asshole resident playing the whole scare tactic and reading me the riot act that my child was “going to lose his finger” repeatedly in front of the other kids, severely scaring them, or the repeated direct instruction to dip my child’s finger in Chili Powder by the doctor knowing it would go in his eye (which by the way, if a parent willingly caused physical harm of that type to a non-verbal cognitively delayed special needs child could get arrested for child abuse), I am absolutely uncertain how to handle this and who to address it with. They never even examined his finger, never addressed the nail falling off and never took a good enough look to tell me how to treat the nail falling off. Even my 12 year old daughter said “that was a waste of time, they didn’t even look at Tony. Neither one of these doctors should be allowed to work with children, especially special needs children, nor should the surgeon be “teaching” residents.
Now, he has ripped his nail almost off, I have clipped it and there is a huge gaping hole and I am not sure what to do because he keeps putting it in his mouth. I have half a mind to drive him to the OHSU E/R and tell them to cast his harm because I am being threatened by their damn doctors that my child is going to loose his finger, they didn't examine it, and now there is a gaping hole!
I think I should call one of those news station programs that help people and we should all take a trip to visit the doctor next week with a great big bowl of chili powder and ask her to rub it in her eyes. I wonder, can I do that?
Life is hard enough when you have such a medically complicated child so when unprofessional idiotic doctors make it harder, I just want to scream! So I am asking, what should I do?
My name is Sandra (aka Mother ADNP) I am Mommy to Tony, Rocco and Sophia... and Daddy (Rich)
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