Another Upcoming Surgery

For my son, William. If you know me fairly well, you will remember that William had a splenic sequestration crisis last August. We decided to have William get chronic transfusions in an effort to reduce the change of another spleen crisis which could be fatal. Thankfully, the transfusions have lived up to all of our hopes, prayers and Dr. T's studies. On the other hand, chronic transfusions can not be given forever as they increase the iron level in the body over time and could cause liver problems. One year is all we planned for in regards to chronic transfusions. One year has passed.

Now it is time for William to get a splenectomy. I do not think one person in my life truly understands the fear that runs through my veins everytime I think about this decision. JT comes closest, but even with him sadly I feel that I sometimes have to hold back on my thoughts and feelings.

I have said this numerous times... Dr. T. is a great hematologist. I was sad when Dr. C. retired, but I am truly thankful that my son still has a great doctor to care for him. Many doctors act like they do not have the time to talk to you about your concerns and talk down to you, but this is not Dr. T. He is intelligent, passionate about his work, kind, respectful and caring. Dr. T. direct approach to the matter helped ease a lot of my fears. Do not get me wrong, I am still scared to death... but now I feel a lot more educated about what William and my family will be facing. Education plays a huge part in the care for my son.

I learned that there are not many pediatric surgeons in the country (how troubling is that!) and that my son's hospital is losing their surgeon. Of course they will get more surgeons very soon, but a particular surgeon is who Dr. T. had in mind for my son. William had a scheduled transfusion today and after meeting with Dr. T., he called the surgeon's nurse to arrange the surgery before he leaves. Thankfully, the surgeon agreed and JT and I are now waiting on the dates. One of the dates was the twins' birthday... September 14. Good God, there is no way I would have scheduled surgery on my son's birthday. I am anxiously awaiting the other dates.

I am scared folks. The logic part of brain looks at the facts. Without a spleen, William faces an increase possibility of infection, but infection is still rare. If William gets a fever of 101.0 or higher, we still would take him to the emergency room as we would now. Doctors would draw blood to test for infection, give him fluids and antibiotics. That part is the same whether or not he has a spleen. Also sickle cell patients lose the function of their spleen around ages 6-8 anyway.

Then my emotion kicks in. My mind goes back to increase possibility of... then I get scared all over again.

Last month and again today, I also learned a great deal about hydroxyurea and bone marrow transplants as a cure for sickle cell disease. Damn you House M.D. for your episode about the bone marrow transplant. I learned that this was far from reality and bone marrow transplants are not painful like House M.D. depicted.

Then Dr. T. threw a whammy at us by mentioning studies regarding partial splenectomies. JT and I said no to this because there are not enough studies on it for sickle cell patients.

I write about this stuff to share with whoever reads because 1. it is therapeutic for me and 2. knowledge is power... if another parent happens to google sickle cell disease or splenic sequestion crisis, I want you to know that you are not alone. Also, always feel free to leave a comment, if you have information to share. There are not many sickle cell patients who have had splenic sequestrian crisis. Share your story if you would like. Have you seen a good article about an advancement in the study of sickle cell disease? Share.

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