Hello everyone! I honestly do not know where to begin. I am numb. I am shocked - that all this is happening to my baby boy. It is confusing; it is heartbreaking; but one thing for sure is that we are NOT giving up and Aiden is NOT giving up. They finally did the procedure to remove the collection of fluid from his abdomen on Monday. It was definitely a sizable amount (photo attached). They sent it off to the lab to get tested for an infection. We were told it would be at least 2 days before receiving any news. So we waited. In the meantime his white blood count increased; however, we were told this is likely due to the procedure. We received the news yesterday that Aiden does in fact have an infection; a horrible infection - two strains of Gram Negative and one strain of Gram Positive. The one for positive is easily treatable; however, the negative strains are the most difficult to treat. It can be resistant to any treatment. Upon receiving this news we are left with questions of why did they wait so damn long to do the procedure. We had two teams of doctors indicating this procedure was an immediate need - hence why he was transported to ER Friday night. The team of doctors that do this procedure did not take it as serious because no one was confident it was an infection. One cannot know unless you do the procedure and it is sent to the lab. It is very frustrating and a lot of other emotions. They performed another scan yesterday to see if there is anymore fluid in his abdomen area and it was confirmed there is - still a sizable amount. 

The next steps are to place a drain outside his body to remove the fluid and treat him with a different antibiotic. They are testing the medicine currently to see if there is any resistance to it. We do not have an answer on that yet as of now. The team that places this drain, is not in a rush to do so as they are once again not as concerned. We have had to escalate this issue to the top. My son will not be a guinea pig for them. He needs this drain as soon as possible to help remove it from his body along with the antibiotic. 

The other part to this is the infection may have already traveled through his shunt tubing and therefore to the shunt area itself which is located on the inside of the right side of his head. There is no way to clearly test this unless we remove everything and begin again with a new shunt and tubing. This can take weeks or longer because of his condition. His dad and I have spoken about everything. This would require two brain surgeries and also open him up to further infections. I will be very transparent - Aiden is weak; his body is weak. He is fighting infections one after another as well as bed sores and deep tissue wounds on his bottom. He is in pain. Our plan is to get him home as soon as we can. That also means this drain needs to be placed as soon as possible. He would be unable to leave the hospital until the follow up scans indicate the infection has been removed from his abdomen.  

Our prayers are the antibiotic works, the drain is placed today, and the scans show no further collection of fluid in his abdomen. Other prayers include obtaining the right equipment for him to use at the home, travel arrangements with medical staff and the insurance companies to understand the urgency and need to continue supporting Aiden and ensuring he is comfortable without pain.