I finally got a returned call from Comprehensive Care!! I prepared myself to be so relieved just by the sound of Dr. M's voice letting me know they have everything under control. But no. It was her nurse. She only called to tell me that Dr. M did not find it necessary to call me. She didn't think a care conference would be beneficial at this time because we lacked sufficient data. And she told me to defer to neurology, and wait for his call. He was in charge and I was to wait and be patient. I crumbled. My support system was no longer my support system. I couldn't get neurosurgery to schedule an appointment to discuss pressure. I couldn't get my neurologist to call us to discuss pressure or our MRI results. I couldn't even get my safety net to help facilitate communication, like she has so many times before. I felt lost. I tried to hold on to the hope that I should hear from Dr. V. with genetics. He PROMISED me.
I held my breath all the next day and lived with my phone by my side. Nothing. I kept checking to make sure my ringer was on, I wasn't in airplane mode, etc. My phone was working, Communication, unfortunately, still was not.
Three days went by. No calls. No emails. No word, no plan, no treatment for Jayson's pain. No acknowledgement that he existed and anyone cared about his suffering. I woke up Friday morning raging with anger. I pay these professionals. I pay them to care for my son. This was medical neglect and it was NOT OKAY. I was done playing nice. I was done writing polite emails and trusting in these professionals to do their job and care for my son. I've been told in the past that I need to step back and be Jayson's mom and let the professionals do their jobs. I really really really wish with all of my heart that I could.
As I struggled to come up with a plan, I got a bad headache at work. I decided that was how my body was reacting to the frustration and the only cure would be to make some progress on this. I took a sick day for the remainder of the day, popped a migraine pill and drove right to Primary Children's Hospital. I was done playing phone tag. I was done praying, hoping and wishing for a call back. I was going to talk to some doctors and nurses face to face. Most clinics should be open and available at the Outpatient Clinic center and I intended to go to them all.
I started with Genetics. What was the update? What did they discuss at the meeting with neurosurgery and neuro radiology? They found me a nurse and she went to get an update. She came back with a confused look on her face. She said, "They don't meet on Tuesdays. Your appointment was on a Tuesday so he wouldn't have a meeting later that day." I responded, "Yes, I know. He said their meetings are on Tuesday, so later that day. He said he would call me to let me know what they discuss and get us a referral to one of the neurosurgeons." "Well, they meet on Wednesdays so I don't know why he told you Tuesdays." "Okay," I said, "So did they meet about Jayson on Wednesday?" She replied, "No... their meeting was cancelled due to full schedules. Dr. V is out now. I can send him a message and suggest that he speak with the team about Jayson next week, or the following week." I told her we didn't have that kind of time. Jayson's pain was getting so severe we had contemplated several times taking him to the hospital to be admitted. His nurse was getting to the point that this is what she suggested. I didn't think we could wait another couple of weeks to learn what they think. I was so defeated. This was my last hope, and it didn't happen. How can sooooo many balls possibly be dropped?? Dr. V promised me! The nurse said she would send him an urgent message about the situation. I didn't hold my breath that it would help.
I moved on to the next clinic-- Neurology. I should not be surprised that this was the most disorganized clinic. There were absolutely NO nurses in clinic. Doctors were in clinic, but not our neuro. And not a single nurse. How does a neurology clinic function without nurses???? They told me to call the nurse line. I told them I had, without a response. Even when my son is seizing around the clock, I cannot get a timely returned phone call. They told me to get online and look up my doctor's email and send him a message. I told them I had sent several and I was still waiting for a response and treatment plan for my son's pain. They told me there was nothing else they could do to help me.
I moved on to neurosurgery. Their clinic was closed. Early start to their weekend I suppose. No great surprise.
I went to radiology to get my son's most recent MRI images on a disk. I had a feeling I would need them. I expressed my frustration to my friend who works there who has helped me through similar situations in the past. She told me neurosurgery should have been in clinic. She gave me a phone number and told me to call. This nurse would answer and would be happy to help me. Guess who's number it was? K's... the ridiculously rude nurse I had already spoken with in neurosurgery. Like the irony? I didn't.
So I called her again. She didn't answer; I didn't expect her too. I left her yet another message and my anxiety spiked as I thought what kind of nasty phone call I might receive from her when and if she returns my call.
I then headed to the Comprehensive Care clinic where Dr. M works. I had to tell myself that Dr. M must not understand how dire this situation was. There's no way she would write us off. There has to be some explanation. It had been another entire WEEK since I had told her that we hadn't heard from anybody. Surely she would want to know, right? Surely she would want to help. I went to the front desk where they told me their last couple of appointments cancelled and they were off early for the afternoon. They explained that Dr. M was in meetings somewhere in the hospital and they would try and page a nurse for me.
I waited for about ten minutes and was so excited to see a nurse coming to meet with me. She listened intently and took notes about what I was saying. Ironically, they seemed like similar notes I had left with a different nurse the previous week. I begged her to plead with Dr. M to call me. We needed her. We were very worried about J and communication was not happening. We would need to admit him if we couldn't get in contact with one of our doctors soon to come up with a plan. The nurse assured me that with a matter this urgent we should hear back from Dr. M soon.
We never did.
I left the clinic feeling more enraged and hopeless that when I arrived. How is this okay??? How is any of this acceptable??? How can so many doctors be dropping the ball and neglecting my son's medical care??
I wanted to give up, but I knew I couldn't. It was only 3:30pm. There was still time to try and make something happen before the weekend arrived. I got in the car and made another call. Our neurologist often works at the Riverton Hospital clinic. I called there and asked to be connected with the front desk. Unfortunately, he was not in clinic there either. She told me to call the nurse line or send him an email. AGAIN. I took a deep breath and asked her if she could please connect me with the nurse line so I could leave yet another message.
I finally lucked out. The nurse answered after only a couple of minute hold. She KNOWS Jayson. She has seen him in clinic and works for both Dr. M and our neurologist. She quickly read all of the emails, notes, phone calls I had left and the couple of short replies from our doctors in the past five weeks. She said this was unacceptable. I couldn't agree more. She said this is not common behavior from Dr. M or Dr. L our neuro. I agreed. She said there must be some type of mix up. They needed to know that nothing has happened. She said she would message Dr. L urgently. Guess where he was?? At Primarys. I passed his location twice on my mission to find someone who could help. She said she would follow up and make sure he personally reads the message that we need a phone call. I was scared to hope, but she called back 30 minutes later to say that she is confident he received the message and is hoping he calls me that evening. If not, it should be Monday at the latest. She told me if I don't hear back by Monday at noon, call back again. She told me not to give up. Keep calling until they get back to us. It was their job.
I went home exhausted having felt like all of my efforts were yet again in vain. No answers. No plan. No ideas for how to help J with his pain or know whether or not there is pressure in his brain. I was so confused.
Just before 5, I got a call back!! It was K with neurosurgery and she was ridiculously nice this time. Guess she was happy it was Friday. She told us that the schedulers went home early today but Monday we should hear from a scheduler in neurosurgery to set up an appointment with Dr. K in neurosurgery a week from Tuesday. If I don't hear back from someone by noon, I should call back. Yes. Something was finally happening!
I took a deep breath and realized I had done all I could do for that week, so I switched modes and focused on Cozette's first birthday party! It was designed to be a huge event and I had a lot of loose ends to tie up before her party the following day. I was at Walmart dealing with a Photo Book fiasco when I got the call.... Dr. L in neurology finally called!!!!!!!!!!!!!!!!! It was short and sweet. He said he thought that neurosurgery scheduled us to see them and that they were taking things over. I explained that the nurse wouldn't schedule us with neurosurgery and we were asking for his and Dr. M's help in getting an appointment. He felt badly. He expressed that he felt an Lumbar Puncture would give us the best information. Since I had already discussed a lot of my concerns with Dr. V in Genetics, I agreed. I was on board. He said he would get it scheduled for the next week. He also said that the medicine Dr. D recommended for Jayson's head pain isn't typically used with pediatric patients, but it can be. He recommended we wait until after the Lumbar Puncture, if we can, to start the medication. I asked him who would follow up with me about the Lumbar Puncture the following week and he said either he or someone from his clinic would call me on Monday with a date and a time. FINALLY we were moving forward.
I was able to enjoy the weekend with my family knowing that we had made some good progress thanks to my extreme efforts. Unfortunately, Jayson wasn't able to enjoy his sister's birthday party. He spent the majority of it inside, crying, melting down and rubbing his head. I am so grateful to his nurse Chelsea who cared for him while I focused on Cozette and her guests.
Monday came around. It was going to be a good day. I should hear from neurosurgery so we can schedule an appointment and from neurology so we can schedule a Lumbar Puncture.
But I didn't. Not a medical phone call all day.
The following day I called neurosurgery AGAIN. Finally we were able to schedule an appointment for the next Tuesday.
I hoped to hear from neurology so I could arrange my work schedule around the Lumbar Puncture. Still no call.
So I called Neurology, in the middle of the week now. They had seen there was a note from Dr. L to a nurse asking her to schedule it. The message hadn't been read by a nurse yet; they said she must be busy. I let out a little of my frustration in the form of a mama bear growl and I was promised a call back later that day with a day and a time. I was called later that afternoon with the date of the following Friday, NOT this week like I was originally told. I was grumpy but figured that gave me more time to ask all of my questions about the risks of an LP.
The following day I put in a call to neurosurgery because I had read that there are significant risks to Chiari patients who get a Lumbar Puncture, even documented deaths. It was highly recommended in the literature to discuss risks and benefits with a patient's neurosurgeon to determine if the LP was worth the risks. It was typically only recommended in patients who could have meningitis, an urgent life threatening situation. I wished this had been brought to my attention by one of our many doctors instead of by another Chiari patient who is a friend of mine, but I was glad to learn of this potential risk none-the-less so I could discuss it with our doctors... through more phone calls. Sigh.
I called our neurosurgeon's office and asked to speak with the nurse. I hoped it wouldn't be K, but told myself I didn't have to be nervous anymore because our last correspondence was positive. Little did I know that our next conversation would put the previous bad experience to shame.
Nurse K got on the line: How can I help you?
Me: Hi K, this is Jayson's mom. I had a question for Dr. B (J's Chiari neurosurgeon) and I hoped you could ask him and get back to me. Dr. L is scheduled to do an LP a week from Friday and it just came to my attention that there are additional risks to Chiari patients. I guess there are some specific ways to lower risks and I wondered if Dr. B thought J's Chiari was stable enough, if the risks of ICP outweighed the risks of the LP and if he had special recommendations for Dr. L to carry out the LP? Could you ask him these questions?
K: Those would be great questions for Dr. L in neurology. Since he is the one you've selected to carry out Jayson's LP instead of a neurosurgeon, why don't you ask him?
Me: Well, Dr. L is NOT a Chiari expert. These are questions I am supposed to ask a neurosurgeon.
K: Yes, well you have selected to have a neurologist do the LP, so you can ask him.
Me: I didn't select him. Your office wouldn't give me an appointment with Neurosurgery and my team told me that Dr. L was heading this up. Dr. L is not the expert on Chiari; I don't know that he will know the answers to my questions.
K: Well, you can contact him and ask him to talk about these concerns with Dr. B if he chooses.
Me: Do you have any idea how hard it is to reach our neurologist? It has taken five weeks to just get him to call us back. Jayson's LP is in a week. I need a quick response, and I am not certain that Dr. L will even have answers to our questions.
K: Well, you will have to call his nurse or send him an email and request that he ask Dr. B your questions.
Me: (In an "I've had enough of your crap" voice) Okay, K. This is how it works. I have a question for a doctor, so I call the doctor's office and talk to the nurse line. I ask my questions. The nurse talks to the doctor and gets back to me. That is how it works with ALL of my son's physicians. Are you telling me that this is NOT how it works in your clinic? That I can't ask you a question, have you talk to Dr. B and then get back to me?
K: Well, typically it does. But not in this instance. With most patients and situations yes, but not in this particular instance.
Me: Why is that?
K: (In a condescending voice) Here Mom, let me tell you what I'll do. If you can't contact your neurologist yourself, how about I write him an email for you asking your questions. That way your questions get asked. I'll even cc you, would you like that? That way you can SEE that the message is getting to your doctor.
Me: Fine. Could you also cc Dr. B since HE is the one who will have answers to these questions?
K: Sure, whatever makes you happy. I'll draft it now. Have a nice day.
$#%& #$#$@ @#$@!!!
Yes, I let out some obscenities. Who the HELL does this woman think she is??? Oh, I detest her and her mean attitude.
Seriously, do you think I'm calling neurosurgery for the FUN of it??? Do you think this is something I even want to be doing??? NO ONE wants to be calling that office. NO ONE. How dare they treat patients' families this way. It is completely unacceptable.
I plan to talk to certain people about K's behavior, but unfortunately I think it will fall on deaf ears.
Oh... and I never received her email she promised to send to our doctors.
I am pretty sure that was my final straw. I was done with the neurosurgery department at Primary Children's Hospital.
The following day I woke up in a more positive mood, realizing that it was probably a good thing how scheduling worked out. We had our appointment with Dr. K in neurosurgery the following Tuesday where I KNOW he will ask Dr. B about the risks of an LP in a Chiari patient. And then the LP was a couple of days later. I assumed I would get my questions answered, no thanks to the mean nurse.
However, I was not prepared for the RIDICULOUS bomb that would be dropped on us later that afternoon. It was a week before Jayson's scheduled Lumbar Puncture.
The phone rang. I saw it was neurology. They were calling without me begging them to. A nurse asked if I was the parent or guardian to Jayson. Yes. She continued,
"Great news!! Dr. L (neurology) had a chance to talk with Dr. B (Chiari neurosurgeon) and they took a minute to review Jayson's MRI imaging and they said the MRI is normal with no evidence of increased intracranial pressure. Dr. L said we can go ahead and cancel the Lumbar Puncture scheduled for Jayson next week. He says he is doing just fine."
Are. You. Freaking. Serious. ? ? ?
I can't make this up. I can't.
So after alllll of my phone calls and emails
after other doctors sending notes to our neurologists with their documented findings of ICP
after a team of neuro radiologists meeting for 30 minutes to come up with a LIST of evidence of ICP which was sent to Dr. L
after our neuro ophthalmologist saying she would talk with Dr. L about her concerns for ICP
after our geneticist telling us he would talk with Dr. L and neurosurgery about his concerns for ICP
and after ALLLL of these doctors were on board for a Lumbar Puncture....
My son's neurologist is going to have his nurse casually call me and tell me that he doesn't see any evidence of pressure after reviewing my son's images for the FIRST TIME after SIX WEEKS for a couple of minutes
and that he plans to CANCEL the ONLY step forward we had taken in those six weeks towards finding answers for Jayson
And he expects me to be okay with that?????
And he can't even make the effort to call me with that news himself?
No. Just no. Completely unacceptable.
I started to cry and asked the nurse, "So what am I expected to do with the information that other doctors have told me that is completely contrary to what Dr. L just said?"
She asked for specifics and I referenced Dr. D's meeting with the neuro radiologists and Dr. V's findings that were consistent with what Dr. D documented. I told her Dr. D had sent her notes to Dr. L. I had ALSO told Dr. L when Dr. D had said. She told me she would not cancel the Lumbar Puncture just yet. This was all so confusing and not okay. She was certain our neuro had not yet read other doctors' notes nor knew this conflicting information yet. She said our doctors needed to get on the same page. I agreed 100%. She said she would talk to Dr. L that day and get back to me.
That was four days ago. Still no update.
So is Jayson having a Lumbar Puncture on Friday?
I don't know.
Does he have intracranial pressure?
Some doctors think so. Others apparently do not. We don't know.
And there is no current plan to find out.
Have we made any progress in nearly SEVEN weeks since Jayson's MRI and nearly FIVE months since Jayson's intense pain began?
No. Absolutely none.
So please understand where I am coming from when I say that I am DONE with this nonsense.
This type of care for my medically fragile child is unacceptable.
I'm certain there are reasons for this negligence and miscommunication. But quite honestly, I don't care to hear them anymore.
My son deserves better and I have continuously promised him I will do everything in my power to ensure he gets the care he deserves.
And that's a promise I intend to keep, Little J.
I promise.
We are hoping that a couple of doctor appointments this week point us in a good direction. We appreciate any and all prayers at this time. Thank you.
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