a visit with the hematologist

Yesterday,Gabriel and I took River down to Children's Hospital in Little Rock to meet with his hematologist, Dr. Stine.

This was our second encounter with the LRCH campus, and I was just as impressed with the hematologist and his staff as I was with River's urology appointment last fall.

The nurses are friendly, knowledgeable, and just good at getting the job done quickly without leaving the impression that they are rushing. And Dr. Stine was awesome. He spent a lot of time listening to my concerns and sorting through all of River's medical quirks, and he was able to give us more information on River's vWD as well as a better idea as to how this is going to affect his life.

For the everyday scheme of things, River can lead a normal, healthy life. He is sure to have more visible bumps and bruises, especially during the toddler years, and we should expect nosebleeds from time to time and bleeding from his gums when he is teething.

Of more concern is anytime that he gets a significant injury or needs to have surgery. In blood that functions properly, the von Willebrand proteins act like ropes to anchor the platelets over wounded tissue. Since River has a deficiency of these proteins, his blood attempts to form clots, but is unable to secure them properly.

This disease is not curable, but it is treatable. There are medications that he can take. Until he's two, the only ones available have to be given through an IV. After his second birthday, there is also a nasal spray that he can use when he gets injured. Since he'll only be 18 moths when he has surgery in September, what is normally an outpatient surgery will now involve at least an overnight stay so he can receive the medication before and after the surgery.

Dr. Stine ordered additional lab work to determine exactly which type of vWD disease River actually has, but he seemed confident that River has Type 1, the least severe of the three. We should get those results in the next 2-3 weeks.

Having to hold River for yet another blood sample was difficult. He screamed and cried, wanting me to make the nurse stop. That was really not fun, but at least this nurse allowed me to hold him on my lap while she worked on him. Once it was over, River was back to his happy self.

Aside from the blood sample, River seemed perfectly at ease with everything. He evn crawled over to Dr. Stine, pulled up on his legs, and lifted his arms up for the doctor to hold him. Dr. Stine bounced him on his knee, made googly faces at him, and let River pull on his lips. I wanted to pull out my camera, but thought that might be a little weird...

I couldn't resist a few shots of his diapered bottom poking out of the gown.


We left the appointment with a stack of informational pamphlets, a medical i.d. bracelet application, and a number for the blood disorders specialty nurse, Lakeisha, with instructions to call or e-mail her with any concerns or questions.

...........................

I am still processing it all. In a lot of ways, it feels like an overload: the information, the emotions.

I know that for the most part, he is fine. This is something that he can live with. But that's what continues to hit me the hardest: He is going to have to live with it. And so am I. There is a lot of worry. A lot of fear.

At the Ash Wedneday service last week, we took River up to the front with us for the impositon of the ashes. Father Stan marked my forehead, and then asked if I wanted him to do River's too. I nodded, thinking Sure, why not, but after we were back in our seats and I sat there reflecting, watching River with the ashes smudged over the bruises on his forehead, I knew in that moment that one day he will die. Just like I will. And everyone else. Death is inevitable. And instead of freaking me out, that thought was a comfort.

No matter how much I worry and fret over him, I can't protect him from everything. And that's okay. At least, I am trying to be okay with it.