This has been a rough week in many ways.
We are pretty sure Ellie’s identity has been stolen, which is just a huge stinking hassle to fix and one more thing we have to track closely for the rest of eternity.
Oh, yeah, did I mention she hasn’t slept through the night since mid-July?
Mid July!
Yes – up every night for 90 minutes to 2 hours. I am a little on the stressed out side by this. However, this is not yet another post about those bastards – the Goods of Sleep Through the Night – who clearly hate me.
No.
This is about a continuity crisis I am having with Ellie’s medical team.
Ellie’s Neurologist, whom we adore, who is excellent in every way from bedside manner to expertise especially since she specializes in hypoxic-ischemic brain injury and PVL, dumped Ellie as a patient on Wednesday.
We had our usual good visit: me with my list of questions, her with her thoughtful answers. She looked Ellie over after she was weighed and had her height and head circumference measured (44.3 cm’s there – the most growth she has had in ages and not due to hydrocephalus). And then she asked me if I had any more questions. I said no, that about does it.
Then she said, I have something I want to talk to you about.
Ok, I said.
I can’t be Ellie’s doctor anymore.
Oh no! Why?
Well, my clinic specializes in newborns up to age three and they have been cracking down on me. I would have done it before but didn’t because of the seizures (they surfaced May of 2006).
So the conversation went. She gave me the name of another doctor, sort of new to the hospital. I thanked her very much for being so great and told her I would miss her. I kept getting the vision in my head of our very first visit with her when we had just moved here and Ellie was a tiny little 13 pound 11 month old. She took Ellie right out of my arms and carried and weighed her, herself.
She said to send her a Christmas card. I said I would. She gave Ellie a little velvet flower with a smiley face and attempted to get Ellie’s attention to say good-bye to her but Ellie wouldn’t look at her. I wondered if she knew or was just tired of sitting and wanted to get to school. She went to shake my hand but I gave her a hug, which she returned and thanked her again trying not to lose it.
And we left.
I was in total shock. It was just like a break up. I started wondering what I had done wrong. Was I a pain in the ass parent to deal with? Why Ellie? Was she dumping all her other aged over three-ers too? What had I done wrong? Am I am horrible person? Will anyone love me? (just kidding about those last two)
She had every right to do it. I probably knew when she first took Ellie on that she could only see her until she was three. I also forgot that completely. She’s a great doctor and I am so thankful for all she did for us. I felt really safe with her on the team. I found out later from Ellie's pediatrician that she had just received some gazillion dollar grant to do more neonatal research so she has to free up her time. That was helpful in answering the, is this personal question. Which it wasn't (and it hardly ever is - that's just where I go - luckily somewhat lightly these days - most of the time anyway - but that is fodder for another post).
The scary part is that I called the doctor she recommended to take over Ellie’s care, but he can’t see her until January 2008. So my kid, with the three shunts, seizures, PVL, and cerebral palsy doesn’t have a neurologist on board for 4 plus months?
No way.
I have been freaking out about this since Wednesday. I spent all of Thursday and Friday calling doctors offices, writing them emails and faxing them letters to ask if they could see Ellie in less than 4 months time. I got some other recommendations from Ellie’s pediatrician but they can’t see Ellie for almost a year – all three of them!
Geez! I am sorry to report that the brain injury - CP business is booming in Boston.
It did dawn on me today that Ellie’s pediatrician, who still works with Ellie’s neuro…, er, I mean former neurologist or Ex – neurologist, can hopefully follow up on the scripts I was supposed to walk out with from that last visit where it was decided to change Ellie’s seizure medication dosages, but totally forgot, being completely flabbergasted and in a daze. I did call Ex-neuro’s office about those but totally felt like a stalker even though I explained that I was just following up on what was decided in that last visit. I haven’t received a call back… So I will have to call again, feeling even more un-entitled and pesky.
Which totally sucks.
Ellie not having a neurologist on her medical team is like trying to sail a ship without a rudder: scary and unfathomable.
Maybe Doctors, if they are dumping patients with a chronic condition, should give them notice – like say until they are able to line up another doctor to cover them?
What do you think?
