11:55 PM CST

Today was a rough day.

B is sleeping peacefully. Thank goodness.

I don’t know how I am ever going to sleep again. Every time I try to lay down and close my eyes I am assaulted by all of these terrible memories of today’s procedure.

Images of B, red faced, tears steaming from his eyes, gasping for air and trying so hard to calm down and take the deep breaths I was begging him to take. Images of me holding him down, not letting him move while the doctors and nurses did their job and tried to help him. But even the knowledge that everything had to be done and was absolutely necessary doesn’t change the fact that he was screaming for me to help him and all I could do was hold him while they continued to hurt him.

7/18/2010 4:45 PM CST

We finally have information. Turns out Bradyn has a condition called Bi-lateral Vesicoureterial Reflux. In less scary terms, this means that his urinary tract is not working properly. Urine is backing up from his bladder into both of his kidneys and causing all sorts of chaos. This back up allows bacteria to travel up the urinary tract and turn into infection in the kidneys. This is what has been causing the crazy high fevers and the Doctors suspect its been going on for quite some time. This condition is graded on a 1 – 5 scale with 5 being the most serious. Of course Bradyn has a 5. (always the overachiever)

There has been some damage done to one of his kidneys. We don’t yet know the extent but from the scans they have done so far it looks minor. He is going to need surgery to correct the condition and repair some of the damage. I met with a specialist today (she was awesome, smart, strong, confident, caring and genuine, everything you want in the Doctor treating your baby). She still has more scans to review tomorrow but her tentative plan of care is to keep him in the hospital until Tuesday so that he can get an entire week of IV antibiotics. At that point she will send us home where we will continue treatment with daily antibiotics until all of the infection is gone. When the infection is gone they will operate. That way they are working with healthy tissue and can really see what needs to be done.

I know this sounds scary (I am FREAKING out at the thought of surgery). But help me be positive here. This baby has been sick for 2 years straight. He has had high fever illness after high fever illness. He has been missing out on the fun of being a 2, 3 and now 4 year old. On top of it all he has to deal with Epilepsy! My baby has been miserable. I am hoping that this discovery is the first step to getting him healthy. Once we deal with this infection and fix this condition, his immune system will be freed up from what has been a constant assault. Maybe, just maybe, once we get this under control the seizure meds will be able to do their job and he can have control over the Epilepsy. Epilepsy is a condition that millions of people live with and from what I’ve been told, once it is controlled by medication; you can share a wonderful life with it. So let’s be positive and focus on getting B to that place.

7/19/2010 2:56 PM CST

My sense of humor is returning and I am sleep deprived and delirious. I have been chuckling to myself all day about the fact that I have been teaching my son birthing breathing techniques to get himself through the pain. Not just the in through your nose out through your mouth deep breaths that I have always encouraged him to use in order to calm down but the for reals measured “hee hee hee, hee hee hee now breathe innnnnnnnnnn okay hee hee hee, hee hee hee”. I always knew that Birthing From Within class would come in handy again….

7/20/2010 6:00 PM CST

We are going home! Just waiting for the doctor to come discharge us!

The surgery has not been scheduled, we have a follow-up appointment in a week and will talk about surgery again then.

I can not wait for a shower in MY shower! Yay!

Category: Epilepsy