Saturday, August 13, 2011


Ever had your computer tell you that you were running low on disk space? Well, today that is how I started to feel. There have been many events in the last few days and next week's calendar is already half full; therefore, I started to feel the overload.  My mind and body definitely started to let me know around 6 p.m. when I got home and literally crashed. I think you could have broken into my house and taken everything and the only way I would have known was if you tried to take my pillow and blanket. As a matter of fact, my legs are still sore.

Yesterday we got another phone call from Dr. Nieves' office. More good news if you ask us. The neonatologist that he discussed our case with at Ochsner, Dr. Ginsberg, has asked to meet with us. Now, this is the first doctor that is asking US to meet with him instead of vice-versa, so in my opinion that shows something about him already. This will give us the opportunity to discuss Parker and our situation prior to delivery and helps us reach our ultimate goal. The ultimate goal being that everyone who will come in contact with me or Parker on the day of delivery is well aware of the situation and can be as prepared as possible for each scenario. Basically, the goal is that we will all be on the same page. We have once again made a step in the right direction. We do not know when this appointment will be yet, but I will keep you updated. 

Today, we met with the pediatric nephrologist at Children's Hospital of New Orleans. Going into this appointment, I had my concerns. I wasn't sure he was going to be able to tell us anything that we didn't already know, but he was very informative. He also showed the MOST positivity out of any doctor we have spoken to. After coming in and introducing himself, he immediately started the conversation. One of the first things that he said was "Yes, there are severe cases of this disease where the patient does not survive, BUT many, many patients do survive and they go on to live long lives. Actually, he continued, I have three active cases of this disease right now. The youngest of them is 6 months old." Finally, a doctor who does inform you of the worst-case scenario, but actually shares the positive side with you as well. I've been looking for this type of doctor for three weeks now and here he is! I haven't even gotten to ask him the first question on my list, which was "Have you treated this disease before?", and he's already answered it. I like him already! He reiterated what every other doctor has told us, that Parker's lungs are the first priority. If we can get over that hurdle, then the kidney's can be dealt with afterwards. I went on with my mile-long list of questions after this and felt completely comfortable with him. I asked him about kidney function after birth and he admitted that we won't know until Parker makes his debut. He did, however, say that his kidney's could actually function perfectly fine or it could be so serious that they need to be removed. He shared a story with me about a 12 year old boy, whose case was very similar to mine. He met the mother while she was still pregnant and she had already been diagnosed. To get to the point the boy is now 12 years old and has not required dialysis or transplant, yet. This case was the "mild" side of the disease. So, now the question lingers, will we be on the mild side or severe side? We talked in detail about kidney removal, dialysis, and transplant. There were many, many questions answered on these topics so I will not share each of them. We did find out, however, that Children's has a transplant team after all. They perform 10-14 transplants per year and they have an entire dialysis center. He asked which blood types we have. I have no clue what Jason's blood type is, but I am O-, which apparently is a great thing. I am a universal donor; therefore, there is a higher chance of me being a match. The donor in a kidney transplant undergoes a laproscopic surgery, which is minimally invasive. That actually shocked me. When I imagined a transplant surgery, I thought it would be much more difficult. I imagined being cut wide open and recovering for months, but apparently technology has far surpassed my imagination.

Overall, the events of the last two days have been another step in the right direction for us. I believe that Dr. Aviles will be an amazing addition to our team. He will not be present at Ochsner for delivery, but if Parker needs to be transported to Children's he will be ready and waiting. He is also my choice for a long-term nephrologist.

He requested a dvd copy of our ultrasound from Dr. Diket's office so that he could look at Parker's kidneys himself. So bright and early Monday morning I will be traveling to Baton Rouge to pick up the DVD from them. Tuesday I have a day filled with appointments once again. My OBGYN in the morning and Dr. Robichaux in the afternoon. Thankfully, Dr. Robichaux will be in Houma so I will not have to travel all the way to Ochsner in New Orleans. Oh, and Wednesday I have a date with the AT&T installation man. He better show up this time! So as you can see, my schedule is already slap full. I am enjoying my lazy time this weekend while I can.

1 comment:

  1. Hi Kristen, I just wanted to say how happy I am that you found a knowledgeable and positive doctor. I feel like you are traveling down a very similar path I did 7 years ago. Just to give you a little hope for the future, my daughter is 9 now and is doing fabulous. They suspect she may need a transplant around young adult age. All cases are different but it sounds like you are asking the right questions and have the right team working with you. If you haven't already, go to for a wealth of info. Under the awareness tab, there is a list of parent questions for physicians that you may find helpful. -Paula