Caleb has been transitioned to a conveniently portable advanced ventilation system for patients needing long term support. Although he is on minimal settings for his age and size, he will remain ventilated to allow his lungs sufficient time to grow. The hope is that this is only temporary and that he will be strong enough one day to breathe on his own. They have also made strides with regards to weaning him from his pain and sedation medications, but because of his doses and the fact that he has never gone a day without them, this is a difficult and slow process. As parents, watching your child withdraw (through no fault of your own) is extremely hard. After each wean, Caleb often becomes restless, irritable, has trouble sleeping, and is sometimes cranky and difficult to console. Overall, he has come a long way and after a discussion with Caleb's general pediatric surgeon, the decision was made to transfer him to Mt. Washington Pediatric Hospital. At this time, his surgeon does not want to perform any additional surgeries, due to the extensive amount of scar tissue, unless it is absolutely necessary in the future. Caleb's current hernia is stable and is not causing him any distress. Also, his follow-up echocardiogram was improved and his head ultrasound remains stable. Even after Caleb leaves Johns Hopkins, he will have regular appointments with pulmonary, neurosurgery, cardiology, and ophthalmology.
Yesterday, we said goodbye to the Johns Hopkins NICU and we began the next part of Caleb's journey at Mt. Washington Pediatric Hospital. Mt. Washington is an affiliate of the University of Maryland Medical Center and Johns Hopkins Medicine and they provide transitional care and specialize in healing, growth, and child development. During Caleb's 206 days in the NICU, he overcame many infections and five surgeries including two CDH hernia repairs, placement of a VP shunt to resolve his hydrocephalus, laser eye surgery to correct his retinopathy of prematurity, and a tracheostomy procedure. There were many dark and trying days, along with countless setbacks, but he surpassed it all and his progress is incredible. Although Caleb's fight played a role in his recovery, he would not be where he is today without the entire NICU team. Luckily, everyone fell in love with Caleb, and because of that, we have met many great people, and created lifelong friendships. We will be forever thankful and hope that with each milestone Caleb reaches, they realize just how much of an impact they have had on not just Caleb but every baby that has passed through the Johns Hopkins NICU. The move was bittersweet...we are happy that Caleb is healthy enough to be taking this next step, scared and nervous to be starting over with a new team of doctors, nurses, and respiratory therapists, and most of all sad to be leaving such amazing people with whom have become like family over the last seven months. It will be strange going to a different hospital every day, but this also means that we are hopefully one step closer to having Caleb at home. We do not know how long Caleb will remain at Mt. Washington as their primary focus will be to wean Caleb completely off his remaining pain and sedation medication, to determine a plan for his feeds, and to help with his development. He will receive physical therapy, occupational therapy, and speech therapy on a regular basis. There are still many things to work out in terms of at home nursing care, but we are looking forward to the day when having Caleb home becomes the new normal.
Now, he just needs to STAY healthy and keep fighting!!!