Brody is an amazing big brother. He whispers "I love you" to Caleb all the time, gives him kisses on his forehead, and is always trying to make him smile by blowing raspberries. Brody will be finishing up 2nd grade soon and although he's had a good school year, he's not a huge fan of anything school related. The parent countdown begins….three years down and ten more to go to make it through high school. Like every other person who works or goes to school, he doesn't understand why he has to work so hard for five days and then only gets two days off for the weekend! Brody has focused on soccer and baseball this year, but I think his goal is to try every sport at least once! We were recently able to visit family in Florida and he proved to be quite the little fisherman. Whether fishing off the boat or dock, Brody was in his glory. Although we greatly missed our #4, it was nice to do something special with Brody and see him so happy.
Now, the long overdue update on Caleb. As I have said so many times before, he continues to amaze us each and every day. He is so resilient and he's beginning to develop quite the personality. He is still most content lying on his back playing with his most favorite toy, a drum with bright lights and a mirror, which he could play with for hours! If he's not happy, he sick. Caleb has had a few sicknesses here and there, but thankfully, he was hospital free for eight months from June to February. In early February, respiratory distress caused by a trach infection landed him in the Johns Hopkins Pediatric Intensive Care Unit (PICU) for five days and a 103.4 temperature and twenty-four hour virus later that month sent him to the emergency room by ambulance, but he was discharged that same night. So, all in all, I would say we have been very lucky. We have been able to further wean the number of medication doses Caleb receives (twenty-two when he came home) to six, which includes two inhalers, a multi vitamin and drops for his trach to help prevent infections. Caleb has had additional follow-up appointments with cardiology and neurosurgery. His echocardiograms have showed that his heart is functioning normally and that the pulmonary hypertension that he once had has fully resolved. His head ultrasounds have also remained stable meaning his shunt is working properly. This is great news but since the status of these things can change momentarily, he will be monitored closely and will have a repeat echocardiogram every three months and repeat head ultrasound every six months. The latest x-rays of his chest still show a persistent 4th hernia. A small portion of his spleen and bowel have migrated into his chest along with the shunt tubing that was placed within the fluid-filled ventricle on his brain and passes under the skin on his right chest. Rather than ending in his abdomen cavity as it should, the tubing resides in his left chest. Although Caleb's surgeons are still very concerned, he is stable and they want him to get as big and strong as possible before they undertake another major surgery to repair the hernia. Instead of repairing this hernia through his abdomen, they will most likely need to make a surgical incision in his chest (thoracotomy) due to the amount of scar tissue already in that area from his previous surgeries. So, with no way of knowing when this time will come (days, weeks, or even years), we will keep pushing forward and enjoying every moment he is home and happy!
Therapy and feeding!!! These are an integral part of Caleb's daily routine. He recently completed a five week Specialized Transition Program (STP) at the Kennedy Krieger Institute. This was an amazing program that allowed Caleb to receive one hour of intense physical, occupational and speech therapy, Monday through Friday, for the length of the program. As much as we would have loved this program to continue, they enabled us to identify and achieve individual goals for Caleb, they provided education to our family and nurses, and they established follow-up plans. We are now focused on transitioning Caleb back to receiving all of these therapies in our home. Cognitively, he is still not functioning at the level of a typical almost three year old toddler, but he is making progress. Caleb can now maintain a sitting position when propped up, roll from back to front and front to back, and stand with support. He is even taking 15-30 steps with a walker when pushed along. Although he sits and stands, he chooses to not do them for long periods of time and he only rolls over if he is forced through ours exercises. We are still trying to determine if this is due to lack of stamina, discomfort caused by his hernia, or for his simple desire to always be laying on his back. Caleb laid on his back in a hospital crib for the first eleven months of his life and maybe he is just doing what he knows best, but we hope one day he will want to see life from different positions! However, he is always on the move and has mastered getting where he wants to go by spinning on his back and he literally gets tangled in all of his cords within seconds of being untangled. Caleb is still trying to master sitting up from a laying position, and pushing up onto all fours into a crawling position, but he is working hard at his own pace and we will be right beside him for when the time comes. Feeding has been and will continue to be one of our biggest challenges, but we are happy to report that Caleb passed his feeding study in October and was cleared for puréed foods and thin liquids. The speech session of the STP program focused on feeding Caleb by mouth and by doing this every day, it gave him the extra boost he needed to start accepting puréed foods on a spoon and sips of water from a cup. At first, if he took a bite of food or sip of water, he would get to play with a toy as his reward and we often had to work around his moaning and negative behavior like pushing our hands away. To prevent aspirating, we worked at a slow pace and what started out as 2-3 bites in an hour long session has now become 15 bites and 15 sips in a twenty minute session with very little distraction and negative behavior. We are attempting to feed Caleb two times a day at home and for the most part, the good days outweigh the bad days.
Finally, the bummer part of this update. Removal of the tracheostomy tube is called decannulation and capping is an important step in the decannulation process. Capping trials are performed to ensure that Caleb can clear his own airway effectively without the need for suctioning and to make sure there is no swelling, stricture, or obstruction of his upper airway. Capping was gradually increased at increments of fifteen minutes and Caleb has progressed to being capped about twelve hours a day when awake. While capped, he must be assessed at all times to make sure he is tolerating breathing through his nose and mouth with the tracheostomy tube covered. In March, Caleb underwent a capped sleep study to see if he was ready for decannulation and due to high levels of CO2 in his blood and obstructive sleep apnea, Caleb failed the study. Caleb’s airway could be obstructed by suprastomal granuloma, a slight anterior tracheal wall collapse, and/or large tonsils and adenoids. During Caleb’s follow-up appointment with the ENT, the doctor scoped his airway and believes that abnormally large tonsils may be the cause of his obstruction. Therefore, Caleb is scheduled to have his tonsils and adenoids removed on May 12th. Although there is no guarantee that the tonsillectomy and adenoidectomy will completely resolve Caleb’s issues, his ENT will perform these procedures to try and optimize his opportunity for success and potential decannulation down the road. Another sleep study will be performed 2-3 months following the surgery. Since Caleb will be going under anesthesia, his general pediatric surgeon will be performing another procedure to move his undescended left testicle into his scrotum (Orchiopexy). This will be tough on him, but we hope his smiles do not stay away for too long!
On a better note, Caleb has started to reach his arms out for us and this makes my heart happy. We have patiently waited almost three long years for him to reach this milestone. Please send good thoughts our way Friday as Caleb will undergo his 11th surgery!