Revising the Dream....

It's been awhile since I have posted. I have spent a lot of time reflecting on my life, and what I want to do from here.

Once Christmas was over, and I had some time to recover from Gross Anatomy (during which I became so stressed that I gained 35 lbs and spent the entire semester broken out), I noticed my oldest daughter becoming emaciated. She was never overweight, and was always on the skinny side, but suddenly lost a lot of weight. She basically stopped eating and only wanted to drink. She became thirsty all the time, and was peeing a lot. I called her pediatrician and asked for a fasting glucose check on her, because obviously the first thing you think of is juvenile or Type 1 diabetes with those symptoms. Her fasting glucose was 72, so normal. However, her pediatrician noted that she had lost weight since her last appointment, and her BMI chart had taken a nosedive, as well as her location on both the height and weight charts. I expressed concern that her sister who is 2 1/2 years younger than Sara was now the same height as Sara and weighed 15 lbs more. So her pediatrician sent us to an endocrinologist.

Nightmare. That is the only word I can think of to describe the endocrinologist visits. First, he measures her and goes through her history. Then he tells us she is underweight and needs to eat more. And he does a fingerstick A1C and blood glucose and a urinalysis. He sends us away feeling terrible. He wants her to go to a psychiatrist because he feels that my 11 year old has anorexia. The next day he calls me to tell me that her A1C and glucose are fine, but that the specific gravity of her urine is very very low. I had noticed this when she gave the sample - her urine looked like water. He called us in for more bloodwork. The nurse in the lab couldn't hit the vein, and dug and dug in her arm, and ended up having to switch arms and try the other arm for bloodwork. Made me sick to see this. After the bloodwork, nothing. I waited a few days and called the office, and the secretary told me that I would receive a letter in the mail with the results. I explain that my daughter keeps getting sicker and sicker and that we would appreciate some sort of phone call. Finally the doctor calls me back and says her blood work looks fine, that her growth hormone levels are on the low end of normal, but that overall the blood work is good. Fine, but the child is getting worse and worse, drinking to the point of vomiting quite often, this is impinging on our lives, she is missing time in class because she has to go to the bathroom so much, etc. I feel like he blows me off.

I get a phone call from the school where my daughter is a 5th grader that she had thrown up. Apparently she drank too much that morning and threw up all over the hallway. So I go pick her up and take her to the children's hospital ER. At this point I am so frustrated that she is sick all the time, I am tired of no one taking me seriously, and I am worried that my daughter is going to waste away to nothing. So the ER runs a few tests and hooks her up to her first IV, and lo and behold the endocrinologist shows up and FINALLY puts the child on desmopressin to help with the extreme urination, and schedules an MRI. Shortly after this is her psychiatrist appointment where the psychiatrist assures me that she does not have anorexia, anxiety, depression or OCD. I already knew that she was okay mentally, but apparently this is something that a professional has to determine and you have to pay $350 for. . .

MRI day . . . April 4. I have to miss class for this. I feel terrible while I am holding her down for the IV part. I feel like maybe I have been overreacting. Maybe I am studying too much medicine and i am one of those people who starts diagnosing their family members with weird things. Am I putting my beautiful daughter through unnecessary tests because I am freaking out and envisioning the worst case scenario? She bravely makes it through the MRI. I feel very emotional about the whole situation.

The next day, April 5, my husband wants to take the family to a baseball game. While he buys the tickets, I receive a phone call. Its the endocrinologist. I immediately know something is wrong .  . .why else would he call me at 7 pm on a Friday evening? He tells me that her MRI showed a thickening of the infundibulum between the pituitary and the hypothalamus, indicating that she does have central diabetes insipidus (which I had suspected all along). He is concerned about the possibility of histiocytosis and wants her to have a chest X-ray ASAP. At this point I don't know what histiocytosis is, and I don't know what to say to him. So while my family is watching the baseball game, I am googling furiously on my phone and texting people. My mom, my neighbor, my best friend, a friend who is a nurse. .  . Histiocytosis scares me, and I begin to imagine worse-case scenarios.

At this point, Sara's health has completely consumed me. I had spent the better part of 4 months at this point obsessing over every bite of food that went into Sara's mouth. I would go out of my way to find special food that she would actually eat, and buying high calorie drinks in the hope that if all she wants to do is drink, at least I can get some calories and nutrients into her (she was obsessed with water, which while healthy, if it is all you consume quickly leads to a calorie deficit!) I can't focus on my schoolwork, I can't focus on the rest of my life, all I can think about is Sara. Is she going to need radiation? Is she going to be okay?

Sara's chest X-ray came back clean. They are going to repeat these X-rays on occasion to check for signs of histiocytosis, but for now it seems like the only thing she has is central diabetes insipidus. She will have to have another MRI in August to check on things. She takes desmopressin twice a day now, and when it wears off it is immediately apparent. She starts urinating a lot, and then becomes extremely thirsty. She can sense when she is getting dehydrated and has terrible headaches that make her crankier than she used to be.

I can't imagine if this had happened during Gross Anatomy. I would have failed the class to take care of my daughter. I realized through this experience that my family is more important than being a doctor, and I don't know that I can handle medical school with the other responsibilities in my life. So, a revision of my plans had to be made. My husband hates where we live. My mom wants us to move closer to her. So, after careful consideration, I have found a physician's assistant program near my mom's house that would be a good fit for me. I would still get to be involved in medicine but I would get a job sooner rather than later and I would not be away from my family quite as long. Right now, this is what I am planning on doing. My plans may change later, but this is what i want for now.

MRI day - I felt like maybe I had over-reacted