We had our initial consultation with Dr. Levitt this morning to discuss the plan and surgical options for Elias’ imperforate anus. First of all, Dr Levitt was nothing at all like we expected. He was a very joyful and joking individual. The mood was very light and that made things more comfortable. Having reviewed the pre-surgical studies which help determine the degree of malformation. In Elias’ case it is a very positive report. Elias’ malformation type is known as rectourethral bulbar fistula. This type of malformation creates an abnormal communication between the rectum and the urinary tract called a rectourinary fistula. The exact location of the fistula has a profound impact on the prognosis. For Elias it is very positive. When we brought up the fistula leakage from the colostomy he simply commented that all this is tied together. Back in October & November, while inpatient when we were asking to see the colorectal team we were denied and told they do not do consults. Dr. Levitt apologized when we told him this and stated that was not true. He was shocked that no one could explain it, until we were able to see our urologist shortly after discharge. Even then it was made to seem as though it was a separate problem that would be resolved during the “Pull-thru” surgery. Well, it appears it will and without extra work. That is the positive from all this. However, we did learn today that going forward we will demand forcefully if needed, to get what we feel is appropriate. We all agreed someone did not want to look stupid during that fiasco.
Simply put, the visit was much less complex than we had anticipated. Having read the support group information and researching our expectations for the post-surgical process was much more in-depth. Thankfully, since Elias’ malformation is less severe and lower formed this makes much of the process simpler. Halleluiah! That is a first for us, for Elias to have something that is “not so severe.” We feel much better about the surgery itself and what will follow. Elias will spend 2 days for surgical recovery admitted. Unfortunately that does land us back on the vent unit. That should be interesting after our drastic and sudden discharge and the fact that no one to this day has contacted us to find out what happened or why our experience was so bad. We will be like hawks though and as soon as we are admitted we plan to meet with the charge nurse and unit manager right off the bat to address some things. After the two days we will follow up in clinic a few times until the eight week mark. At that time another surgery will take place to reverse the colostomy! At this moment we do not have a date for the surgery to be done. It will be a few months still. We were pleased to hear they want to wait until flu/RSV season is over to reduce his risk. So probably sometime in April or May is when they project. It was a huge relief to hear such positive news today, and the snow held off as well for our travels. Hope everyone stays safe and warm with this big winter storm.