Wednesday, June 11, 2014

We saw a new pediatrician

From the time Daisy came to me, she saw Madame Doctor for her day-to-day medical needs. I liked Madame Doctor good enough and was pleased with the care she has provided for all of my children. However, because Daisy is an unvaccinated child, Madame Doctor found herself in a position where the clinic owner decided not to treat Daisy any longer. We received a letter in the mail stating that I had 30 days in which to find a new primary care physician for Daisy. After those 30 days were up, she could no longer be treated in the clinic(s) where Madame Doctor works.

I began the search of finding a new PCP (primary care physician). Playing nice, I first called the doctors on a list that Bio Mom provided. Supposedly Bio Mom had already called around to find a PCP that was willing to care for a special-needs, unvaccinated child.

The first doctor that I called said no almost immediately. I explained that I had a notarized letter from Bio Mom where she assumed all liability over Daisy's health. The office manager took a fax of this letter along with an explanation of our "story" to both doctors in the clinic. Neither physician was willing to treat Daisy.

I called a couple other doctors and didn't get called back.

Then we ended up in the hospital.

I very much liked the intensive care doctor that treated Daisy in the PICU. He really listened to me and took me seriously. Through conversation he said that he was personal friends with a pediatrician in town and he would make a phone call. His friend agreed to treat Daisy. (Whew. One problem solved.) When we were discharged, the PICU nurse scheduled Daisy's first appointment in the new doctor's office for this morning.

The new doctor is over a half hour away. I was pleasantly surprised to see an empty waiting room though - which meant I wasn't going to have to wait hours and hours to be seen. (Another huge relief for me!)

Everyone in the office was quite nice. I didn't learn anything new per se. But all the facts I know to be true were repeated to me again this morning. Even though I know this, it's still hard for my heart to process sometimes.
  • We are just starting to see the "behaviors" that will come as a result of the TBI (traumatic brain injury). Because she's still developing, behaviors will still continue to emerge. This is true because parts of Daisy's brain are permanently damaged. In fact, she has a condition called brain atrophy which can be progressive.
    Side note: I hear this a lot! "Daisy is still developing. We don't know how much she's going to progress. She is continuing to heal." That is wonderful news to hear. But the opposite of that is exactly true as well and that's what the PA was telling me this morning. Daisy is still developing and we have no idea how badly the brain damage is going to affect her overall. New symptoms and problems are likely to continue to come up.
  • The crying is likely to continue to increase. Kids with TBI have deep-seated brain issues that cause discomfort. Typically, the crying just gets worse and worse.
  • We didn't get to see the doctor - we saw a nurse practitioner. And she made this very clear when I got excited because she validated something I've thought all along. I said, "Yeah! A doctor says it's cerebral palsy." She said, "I'm just a PA." I said, "I don't care. You've got a white coat!!" It doesn't change any sort of a diagnosis or plan for treatment. But Daisy's flappy hand, leg, and now bobbing head *could* be called cerebral palsy.
  • Daisy didn't respond much at all when the PA checked her eyesight. Proof yet again that Daisy is significantly visually impaired.
  • The PA talked to me about another shaken baby that is cared for in their office. That pour unfortunate soul is far worse off when compared to Daisy. One of the other girl's symptoms is an inability to control her own body heat. The PA said the other little girl is always hot or cold. A light went off in my head. Miss Daisy has a VERY fine window of where she is comfortable. She often seems to be one extreme or the other. I never would have thought to attribute that to the brain damage, but the PA said it is very much from the head trauma.
    Again - it's those "symptoms" of the TBI that are going to continue to plague Daisy for the rest of her life. It's so hard to hear that sometimes. Daisy suffers from something that was 100% preventable!!!
I didn't tell Mr. CW about this doctor appointment. It's on a day that Bio Mom works but really, I'll be honest, I didn't want to drag her along to this one. Bio Mom didn't even ask me ANYTHING about her daughter being in the hospital over the weekend. She said nothing!!! I even had to change the visit by an hour on Monday because we weren't discharged on time to make the usual visit time. I drove straight from the hospital to the visit and Bio Mom said absolutely nothing to me when I handed her her baby. She didn't ask how Daisy was. She didn't ask what happened at the hospital. She didn't speak to me at all. (And yes, I know that Mr. CW had talked to her and told her what was going on. But still, one would think if her daughter was JUST released from the hospital that Mom would mention something about it.) Anyway, since she didn't care about the hospitalization, I didn't make it a priority to make sure she knew about this follow-up visit. Slap my hand.

The new PCP understood that I wanted to get a referral to a new neurologist. Dr. BrainMan was less than helpful in the hospital and he said several things that were even a bit insulting to me. If I was a brand new mother that he was working with it would be one thing. But Pumpkin saw Dr. BrainMan and we worked together for almost two years with her. I've seen him well over a dozen times in both his office and at hospital stays. So when he asked me if I had air conditioning, and if I fed Daisy when she was crying (insinuating that she might be crying because she's uncomfortable in her environment or that she's hungry) I decided I was less than thrilled with his attention to the problem at hand. I've parented my share of babies. And yes, I know that babies with TBI are going to have sleep problems and they're going to be irritable. But what I'm dealing with with Daisy is so much more than anything I can bear. I needed to discuss a change in her medication. And all Dr. BrainMan would offer up is to increase the dosage of Benadryl. He even looked me in the eyes and said that the phenobarbital that she's on can cause personality changes and irritability. But he refused to consider putting her on a different med to control any seizure behavior she might have.

Sadly, when the new PCP called the new neurologist, I was told that the next available appointment isn't until September. No amount of begging was going to change that. So...I'm stuck seeing Dr. BrainMan. Hopefully he will continue to write the Rx for baclofen that we got when we were discharged from the hospital. The PICU doctor knew that Benadryl wasn't going to be enough so he wrote an Rx for one month of the baclofen. So far, I think it's going to help. If Daisy stays in two weeks I might go ahead and make that appointment for September just in case. I don't really want to see Dr. BrainMan ever again. But for now, I'm stuck with him.

Overall I'm pleased with this new doctor's office. In fact, once I sign my life away officially and agree - on paperwork - to care for Wispy until the State determines he needs to go somewhere else (if that ever happens anyway), I might move Wispy to this doctor's office as well. As much as I like Madame Doctor, if she can't see Daisy, I'm not sure how I feel about bringing my other kids there anymore. After all, Daisy would likely be with me if I had to bring TT or Bart in (for example). What would they do? Would they kick us all out?


G said...

So glad you've got the pediatrician issue resolved! I transferred all my kids to the ped who sees my fosters, too. Nothing wrong with the old one (and no immunization issues, old one just didn't take Medicaid), but it's so much simpler to have everybody seen in the same place.

One piece of advice on the neuro based on my experience with specialists: Take the September appt now. You can always cancel it if Daisy leaves in 2 weeks (or inform BioMom of it as a "second opinion" and leave it up to her to cancel it?) But, if you wait two weeks to schedule it, they might not be able to see her until October.

Annie said...

So glad you have that new office where you feel comfortable. I think you should make the appointment to see the new neurologist, for the same reasons G does, but also - be sure to tell them that you will take the first free appointment if one comes open. We got into a psychiatrist that way a few months earlier than we would have otherwise.

Karen said...

Do you think it would be wise to have Mr.CW join you at the next appointment with Dr.Brainman? From reading along, I'd be worried that Dr.Brainman will be upset that you've got Daisy on something other than the Benadryl, that mom will see Dr. Brainman's disapproval, and that it will further fuel Mom's theory of you trying to over-medicate and complicate Daisy's health... and that's if mom gets past hearing that there were "only" minor abnormalities on the EEG. It sounds like you've pretty much accepted (and I'm not saying this in a bad way) that there's a good chance Daisy will leave you in a few weeks. If she does, then it might be a good idea to have someone who will be in Daisy's life post-reunification, besides biomom, to hear what Dr.Brainman says (assuming Mr.CW/CPS stays involved for a short while). And if a miracle happens and she doesn't go home, I'm sure biomom's going to be even more mad with you.

Paul Quinn said...

Being the father of a special needs child myself, I understand the need to find a doctor who will understand your specific needs. Our son's first pediatrician was awful, always telling us to let his illnesses run its course, not understanding that because of his disease, any illness was life threatening. Luckily, we found one who was more understanding.

Paul Quinn @ Med Care Pediatric