We have made it an entire year and a half with no surgeries. What a blessing that is. But, we now find ourselves here at another surgery. I’m thankful it is not another heart surgery, but this abdominal surgery comes with many challenges. It’s hard for me to have this conversation. I tend to shut down a bit, so I’m going to do the best I can to keep the blog updated with information. And, maybe, just maybe, I’ll start sharing our adventures once again 🙂 For now, this is where we are at with Everett.
When E was born, along with his heart defect, he had an intestinal malrotation. Here is a little information on malrotation since most people are confused on what this means:
“The small and large intestines are the longest part of the digestive system. If stretched out to their full length, they would measure more than 20 feet long by adulthood, but because they’re folded up, they fit into the relatively small space inside the abdomen.
Malrotation occurs when the intestines don’t position themselves normally during fetal development and aren’t attached inside properly as a result. The exact reason this occurs is unknown.
When a fetus develops in the womb, the intestines start out as a small, straight tube between the stomach and the rectum. As this tube develops into separate organs, the intestines move into the umbilical cord, which supplies nutrients to the developing embryo. Near the end of the first trimester of pregnancy, the intestines move from the umbilical cord into the abdomen. When they don’t properly turn after moving into the abdomen, malrotation occurs.”
Anyway, E had surgery to repair his malrotation at 6 weeks old. This is called the Ladd’s Procedure. About a year and a half later, after E’s second heart surgery, E ended up in emergency surgery for a bowel obstruction, caused by one of the bands from his initial procedure.
Over the last couple years, we have struggled with E vomiting and having periodic intense abdominal pain. It has been a long process with no relief. From the pediatrician to the gastroenterologist to ENT to neurology to an allergist. If anyone needs a specialist recommendation, we have probably seen one. E has undergone countless procedures in this time to find an answer for his pain and vomiting – X-rays, upper GI series, an upper endoscopy, lab work, sleep studies, an MRI, an EEG, and a number of medications for reflux and migraines.
Through it all, he was diagnosed with Abdominal Migraines or Cyclic Vomiting. This is a variant of traditional migraines. We accepted this diagnosis and began working toward relief for him. At this time, E was suffering from weekly episodes. For months, we worked with the neurologist trying to find the right combination of medications for E. And, for months, it all failed. We decided it was time to remove him from the meds and see if things were worse. They were not, and they still weren’t better. Exhausted and frustrated for our little guy, we took a break from specialists and helped him through each episode with extra comfort and anti-nausea medication.
A couple weeks ago, E had another episode, but along with it, he was in such pain that he was rolling on the floor screaming and crying. This is the type of pain we saw with his bowel obstruction, as well as his other intense episodes. It was time to see GI again.
E’s surgery will be on February 24. The idea is that E is having intermittent obstructions caused by one of the bands from his initial Ladd’s procedure, since we know they have caused a problem in the past. He may still be having occasional migraines, as well, but this could be causing the bulk of his problems. The plan is for a laparoscopic procedure, and, hopefully, the surgeon will find a problem area that can be fixed. If laparoscopic is unsuccessful, the surgeon is prepared to go in through his old incision, if needed, but we pray that is not necessary.
Because he is on Coumadin for his heart valve, it complicates things and produces extra anxiety for us. But, everyone is in agreement that it is better to handle this in a planned, controlled environment instead of waiting for an emergency situation with another full-blown bowel obstruction.
At the end of this week, we will begin bridging from Coumadin to twice-a-day Lovenox injections. He will most likely be on Lovenox afterward, as well. My heart just aches for him. E is such a trooper through it all, but there are two things he hates more than anything – lab draws and shots. And, I’ve heard Lovenox injections are awful. So, the plan is bribery. We are going to put together the mother of all prize boxes to get him through each injection. This may be more expensive than Christmas. Ha.
I also need some extra prayers to be able to give him these shots. Pricking his finger once a week to check his INR is tough enough on this momma. I don’t want to be the reason my baby cries.
Please keep Everett and all of our family in your prayers. This is hard on everyone, but we try our best to keep smiling and not let this life knock us down.
Photo Credit: Kerri Dickey Photography