Finally, we have been reunited with Dr. Alam… 4 years of not seeing him in person is a long time. If you have a medically challenged child you know what comfort a specialist doctor can bring. Today at the hospital has only reinforced that. For those of you who are new to our blog Gabby’s birth defect is truly unique. Numerically OEIS kids only occur 1 in every 400,000 live births. It occurs in 1 in every 200,000 pregnancies meaning that half of all OEIS babies either pass from complications in vitro or are terminated. When Gabby was born we approached a surgical team in Baton Rouge regarding her surgical needs but were told that they could not handle the complicated case. In New Orleans, they took care of the initial surgery but we were told again that the medical team wasn’t the best choice for her care. The suggested that go to Boston Children’s (Dr. Gearheart- urologist extraordinaire), Houston Children’s (for the close proximity to home) or Cincinnati Children’s (Dr. Peña- the famous Dr. that created a whole medical procedure called PSARP). We chose to go to Cincinnati. There Dr. Peña selected Dr. Alam, from a team of several urologist, to be the urologist to be part of the process for determining how to proceed with Gabby’s case. He was apart of Gabby’s 2nd surgery around 18 months old and then when Dr. Peña stepped away because Gabby wasn’t eligible for PSARP, Dr. Alam became the head of almost all aspects of her care. From that very first meeting in Cincinnati there has been a steady and ongoing comfort in him being part of our lives. He is extremely cautious and knows that each case is so unique that there is no cookie cutter way of repairing these children. I have no idea that what drove Dr. Alam to specialize in OEIS, there are only a few physicians in the nation that are knowledgeable enough to take care of these children. The rarity of what she was born with was made evident today as a team of hospital pediatricians and residents came through making rounds on the made the comment that since Dr. Alam has joined the team at El Paso Childrens that they are seeing all kinds of urological cases that they have never encountered in their careers. All of the support staff keeps asking why we would travel from south Louisiana to a very small hospital in west Texas for a surgery… all Bart and I can say is if you knew Dr. Alam it would make perfect since to travel a collective 15,000+ miles from Cincinnati, New York City, Charleston and now El Paso.
It has been 4 years since the last surgery Dr. Alam performed on her and “set himself up” for upcoming surgeries. While I will not share the specifics of this surgery half of his plan failed and he is truly frustrated by this. Today ended up being more exploratory that anything else and the drain that she had placed in May that was supposed to be removed unfortunately is coming back home with us for at least another 4 to 12 weeks depending on our schedules. He did make an adjustment to the drain and then took an excessive amount of images via scope and X-ray so that he can formulate a plan of attack to rid Gabby of the drain in the aforementioned timeline. So what started in May with a plan of possibly 3 procedures over the rest of the year may now stretch to 4 procedures stretching into next summer. Not exactly the news and timeline any of us wanted. I just have to have faith that this timeline is all in god’s plan
and that it is what will work best for Gabby. After todays procedure they pediatric staff noticed that she was becoming more pale as the day went on. They drew labs and it was discovered that Gabby’s MCV level was dangerously low and the decision was made to give her a blood transfusion which is happening currently as I type. It took a bit to get started because it true Gabby fashion she has one of the most unique blood types, AB+ and they didn’t have the blood type at the hospital so it had to be requested from the blood bank. Pending all goes well with the transfusion and that she is up and moving in the morning hopefully when should be headed home by Sunday. Fingers Crossed!!
