As if balancing being home with Brody and being at the hospital with Caleb hasn't been hard enough, I have decided to go back to work on Tuesday. Spending my days (and some evenings) at the hospital has become my new routine and I am lucky to have had this time with Caleb, but I had hoped he would be in a better spot when I returned to work. He is thirty-seven days old and almost two weeks post CDH surgery, and he has made tremendous progress with regards to his ventilation. He was transitioned from the oscillator vent to the conventional vent this past Saturday and he continues to be weaned slowly. At the end of the weaning process, Caleb will no longer require mechanical ventilation to maintain sufficient ventilation and oxygenation and he will be extubated, which refers to the removal of his endotracheal tube (ETT). The timing of how long the weaning process will take is unknown, but we are so thankful for his strides thus far and hope for continued good news everyday. For Caleb, the saying has always been "slow and steady wins the race".
I am grateful to be able to tell you this news of his stabilization on the vent, but saddened to report that his brain bleed and hydrocephalus has gotten worse. After two unchanged head ultrasounds (the last being after his CDH surgery), we were optimistic that the brain bleed and hydrocephalus would resolve on it's own. Unfortunately, this adds another level of complexity to Caleb's already difficult road to recovery. The primary characteristic of hydrocephalus is the excess accumulation of cerebrospinal fluid (CSF), a clear fluid that surrounds the brain and spinal cord. The excessive accumulation of CSF results in an abnormal widening of spaces in the brain called ventricles and this widening creates potentially harmful pressure on the tissues of the brain. As a result of the hydrocephalus, Caleb will undergo his second surgery in a few weeks to have a ventricular peritoneal (VP) shunt implanted. A shunt is a narrow piece of tubing that is placed within the fluid-filled ventricle inside the brain and the tubing is then passed under the skin into another area of the body, most often into the abdominal cavity. The shunt tubing relieves pressure on the brain that has been caused by the hydrocephalus by draining the extra fluid in the brain ventricle(s) to a different area of the body where it can be absorbed more quickly. The neurosurgeons do not seem to be in an rush to perform this surgery as they want to ensure he is stable on the conventional ventilator and that he has time to recover from his CDH surgery since one end of the shunt will be placed close to the other incision area.
One concern is that shunt systems are imperfect devices and complications may include mechanical failure, infections, obstructions, and the need to lengthen or replace the catheter so regular monitoring and medical follow up will be required. When complications occur, subsequent surgery to replace the failed part or the entire shunt system may be needed. In addition, hydrocephalus (along with his prematurity and CDH) pose risks to both cognitive and physical development. However, many children diagnosed with the disorder benefit from rehabilitation therapies and educational interventions and go on to lead normal lives with few limitations. Treatment by an interdisciplinary team of medical professionals, rehabilitation specialists, and educational experts is critical to a positive outcome. The uncertainty, as you can imagine, is extremely scary and creates a new level of anxiety for me...but he has already proven to be a fighter and I know he will surpass this obstacle too.
Much like going back to work after Brody was born, tomorrow will be an extremely difficult and emotional day for me. As much as I know it is the right decision, I would rather be spending my days next to Caleb while he continues to make amazing progress and prove that he is truly a miracle. It is comforting knowing that he is in great hands at the Hopkins NICU, but it will be important for us to remain his biggest advocates as we are the one thing constant in his life since the doctors, nurses and respiratory therapists change frequently. Although this decision is tough now, I will be thankful to have saved my leave for when Caleb is finally released from the hospital as it will give me time to adjust and bond with him at home. Just the thought of my new daily routine of going to work, visiting Caleb at the hospital and spending time with Brody at night is exhausting...
Pictures of Brody's 1st Day of Kindergarten