Remember me?

It has been quite some time since I have even thought about blogging. Usually writing is something that really helps me. Frankly, for the past month plus I haven't even felt capable of writing. My emotions have been all over the place, things have been crazy and at times putting one foot in front of the other has been hard enough let alone forming coherent sentences.

Owen had his renal pelvic ultrasound at the beginning of December. Most of you have probably heard about it by now. I don't have the energy to rehash the whole thing, but it was not good. In short: hydronephrosis in both kidneys. The left side, the ureter is just too floppy and can't push all of the urine to the bladder. The right side, there is too much pressure and the valve is not working, causing urine to reflux into the kidney. It was a terrible conversation. Basically, the reimplantation surgery in October did not work. Dr. Gazak said Owen would likely need to have another bilateral ureterostomy. He was going to have to take him back apart. After asking a million questions and my mind racing with a million more that I didn't know how to ask, I asked when he would do the reimplant again. How long would he have the ostomies this time? Dr. Gazak told us that he has never seen a reimplant work after failing the first time in a patient with reflux this severe. He said the best option long term may be to reconstruct Owen's bladder using part of his bowel, making it large enough to allow the reflux to occur. That would mean Owen would have a permanent hole in his belly leading to his bladder, which would need to be cathed every 2-3 hours to keep his bladder empty. Horrible, terrifying, unthinkable. I couldn't even stomach the thought for a while. I thought of every stage of his development through the fog of this possibility. He will be ok, he will live a normal life, but it will be hard. No parent wants to see his or her child deal with a permanent disability.

While I was digesting information, Wes got busy researching pediatric urology to find the best hospital in the country. Children's Hospital of Philadelphia is #1 and Boston Children's Hospial is #2. He called them both. The Chief of Pediatric Urology at Boston Children's couldn't wait to review Owen's case. In fact we heard from him yesterday. Basically he wants to see Owen and run tests that he has already had. He also recommends holding off on ostomy surgery right now. Wes also talked to Dr. Gazak's nurse and Dr. Gazak has been thinking about Owen's situation and seems to feel the same way as of a week or so ago. Wes will be calling CHOP on Thursday to make an appointment there.

Today Owen had bloodwork done to check his creatinine and CO2 levels, which are indicators of kidney function. He was a champ! Tomorrow afternoon he will have another renal pelvic ultrasound, after which we will speak with Dr. Gazak about how things are looking and the results of the bloodwork. Needless to say we are very nervous. Like I said, after we have more information Wes will be calling CHOP for an appointment.

This holiday season has been a difficult one, but also a great one. It was great spending so much time as a family and with extended family. It was hard because in this past month I have digested the information about Owen's condition, perhaps at times become complacent about it. I mean complacent in the sense that I stopped thinking about it 24/7. I am still paranoid that he will get an infection, I still worry about him and his future. On the other hand he is a happy otherwise healthy little boy. When people are around him they can't help but smile. He loves life, which makes me love life. I guess what I am trying to say is that I know that no matter happens with Owen's bladder, no matter what they have to do to "fix" him, he will still be my Little Man. He will still live a happy life, and most importantly he will still be loved just the way he is now. Oh, this is just so hard. The ups and downs and all of the emotion involved with watching one's child experience the difficulty of a serious illness. Did I mention that I'm nervous?