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!!!
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?