Well, again a lot has gone on in the last two days. Starting with Tuesday. The Docs told us that they all agreed that since it was taking Benz too long to get his neutrophil number up on his own, that they recommend not starting the ganciclovir again at all. Before we thought that they would give it to him again once his neutrophil number came back up. The Docs told Amy and I it was our choice on what to do. Start it again or not. They said that they believe the positives of the ganciclovir are over shadowed by the negatives of having a low neutrophil number for too long. We do not want him to get another infection. Amy and I struggled with this decision all day yesterday. Amy had a meeting with the infectious disease doctor, neonatologist, his nurse for the day, and one or two other docs. That is when they told her all of this information. She called me at work to fill me in. She told me all of this information and that one doctor said "we already know he is going to me mentally handicapped, does not starting the medicine again and possibly having a 2% hearing loss make a difference?" (paraphrased from what I remember her saying) That really hurt me, and I knew it hurt Amy. I drove to the hospital as soon as I could to be with her. The weird part is, I have been asking a doctor to say that to me for 3 weeks now and they would not, they would say "time will tell." So the fact that I did not ask one of my probing questions and someone said it on their own caught me off guard. I immediately got defensive. After 24 hours I now appreciate the honesty. We are going to try prove her wrong, but I appreciate the honesty.
Today, is a whole new story. Sorry for wasting your time in the first paragraph, but if you want a look into this whole process, you got it. Amy and I have been in constant contact with Doctor Adler of the university of Virginia Common Wealth who has dedicated his studies to CMV and also Doctor Kimberlan of the University of Alabama, he dedicated his studies to ganciclovir. These two have been so very helpful. Amy put Dr. Kimberlan in contact with our Infectious disease doctor and they came up with a new plan. More like Dr. Kimberlan said "this is what we are going to do from now on." He suggests starting Benz on valganciclovir which is an oral version of ganciclovir. This valganciclovir does not make the neutrofil count drop like the ganciclovir does. So now when Benzen's neutrophil count goes above 500 they will start the valganciclovir. I can say that I don't want to see my son going through Chemo again, but I think that the medicine will help preserve his hearing, vision, and help in his all around development. Like I said this is an oral medicine. Best case scenerio we can bring Benz home and give it to him. We would have to be extra cautious about infections. We would also have to take him to the hospital once a day or at least every other day. But, he would be home. Who knows what will happen tomorrow.
This is a total roller coaster ride and not a fun one. You can not believe the information exchange on a daily basis. That's where my quick sand comment comes in. This whole experience can swallow a person up. It starts with your brain. The doctor sits you in a chair and says "we found some serious abnormalities in your pregnancy." You immediately get tunnel vision, your mouth goes dry it's hard to breath, and you feel nauseous (you will vomit when the meeting is over). The only thing to do is grab a pen and paper and hope you can write, because you know you will have to explain this to 500 people. After the meeting your chest will hurt. Are you having a heart attack or does your heart hurt for your wife, daughter, and soon to be son? After pacing around for the next couple months your legs and feet ache. Once you get out the quick sand and things are looking better, there is more the next day. The only cure for "quick sand" Faith, Family, and Focus. Well I guess it's now the three F's of quick sand haha. I know now that this CMV will be what we let it be. We are fighting everyday to make the best decisions so that Benz has the best shot at a normal life.
I'll leave you with one of my favorite sayings and a song today, double whammy. The saying is "How do you eat an elephant? Answer-one bite at a time." It's just a funny way a saying, take life one step at a time. The song was sung by Phillip Phillips the American Idol winner. It's called "Home". Just listen to it and you will understand why I like it. Not sure who sang it originally, but Philip saying very well last night on Idol.
The picture above is the basket Amy and I made from some of the goodies we got less than 24 hours after we put it out. So, it went to a good cause. We truly appreciate everything everyone has done for us.
Goodnight,
Ben
Good Morning Little Remer Family! Great entry Ben. I like how you explain things, very factual but written in every day lingo so that we can understand. As I was reading the first part, I thought of something Mr. McNeill told me once. He was saying it during a football game, but he was talking about life. "You can't win a game playing just defense" Isn't that so true. Thank God you have hooked up with a Specialist that has the same thought process. I have no idea how you found these doctors but I do know that when my dad was sick, the Lord put people in my and my sister's path to help and it was amazing. When you are in the middle of it you,don't really see it, your so caught up in the "urgency" of the situation. But in retrospect it's like "wow" (that's a small and humbling wow) As for quicksand, put a board in front of you befor you walk, it will keep you afloat. Think about it.......
ReplyDeleteAlways on my mind,
Josie