Thankfully, Caleb's follow up appointments with the eye doctor showed that his eyes responded perfectly to the surgery and he should no longer be in danger of further retina eye disease. The goal of the surgery for retinopathy of prematurity is to stop the progression of the disease and it appears it has at the moment; however, a degree of Caleb's peripheral vision may be lost. He will have follow up exams every few weeks while at the hospital and then he will need regular, yearly eye exams for most of his life. This was such a relief and some much needed good news...
When Caleb came back from his CDH repair surgery, the pediatric surgeons expressed their concern over whether or not the two additional patches would hold since there was not much viable tissue in the surrounding areas. Our biggest fear came true just thirteen days later when we learned that Caleb had reherniated again. Although this is typical after an initial CDH repair, it usually does not occur until months or even years later. The panic set in and my mind started racing. The next few days were a blur as we tried to process everything. We met with the surgeon and he addressed what felt like a million of our questions. Unlike the last recurrence, they do not believe that emergency surgery is required since only a small portion of his stomach is up in his chest and it should not be causing Caleb any distress. In addition, they do not believe he has fully recovered from the last repair and they want to make sure he is strong enough to withstand another surgery, if and when that decision is made. We discussed the latissimus dorsi muscle flap repair, which is another approach besides the patch, but Caleb is just not big enough yet. After discussing our options it was determined that the plan of action would be to monitor the reherniation closely and most importantly get him bigger and stronger. His lungs are very immature and there is a lot of scar tissue so his respiratory function will be their primary focus.
This week, the NICU doctors will be consulting with the pulmonary team, who deals with diseases involving the respiratory tract and manages patients who have needed prolonged mechanical ventilation. Although Caleb went several weeks with no mechanical ventilation, he still needed the help of continuous positive airway pressure (CPAP) and the nasal cannula. They had been unable to wean this support and his tachypnea (rapid breathing) was still present and at its worst. As a result, they have mentioned the possibility of Caleb needing a tracheostomy, which is an opening into the windpipe (trachea) that is held open by a tracheostomy tube and helps you breathe when the usual route for breathing is impaired. After the initial shock, we have started to prepare ourselves for this procedure and focus on some of the benefits. Caleb will be able to breathe easier as it offers a more stable and secure airway, he will not require as much pain medication and sedation, and he can begin developing at a normal pace. As parents, we will be able to see his adorable face (entirely), enjoy his coo’s as only a baby can do, see him smile, and we will be able to hold and interact with him again. If this is determined to be the direction in which the doctor’s proceed, the hope is that tracheostomy would be temporary and can be removed once Caleb’s lungs grow and develop over time.
With both surgeries just a day apart, Caleb's already immature lungs took a big hit and he still hasn't recovered. Although they tried to extubate a few days after his CDH repair surgery, he proved that he wasn't ready. He remains intubated and has needed more respiratory support over the last week then he has in a long time. In the midst of trying to recover from the surgeries, he has developed two endotracheal tube (ET) infections and a blood infection, which means more setbacks and antibiotics.
On a better note, Caleb’s first Halloween was one to remember. He was the cutest bat, monster, pumpkin, pea pod, and skeleton and being dressed in the crazy outfits didn’t seem to bother him at all. A special thanks to the nurses and RTs who helped make it so memorable!!!
The goal is to keep him comfortable and get him healthy (no more infections) in the days to come and to improve his respiratory status. Hoping he continues to tolerate the steady increase back to full feeds, slow wean of his methadone, and most importantly that his reherniation remains stable and unchanged.
We are beyond grateful for the continued support of our family, friends, and even those we do not know. Your thoughts, prayers, messages, and texts are what get Caleb and us through this extremely difficult time.
Stay strong and keep fighting, Caleb!