1) I am not a SUPERHERO. The learning curve may be steeper, but I am just doing what all other moms do...figuring out how to do this mom thing the best I can and doing what is best for my child.
2) A good support system makes it all possible. I have an amazing family and the best of friends that I wouldn’t know what to do without.
3) I am thankful Brody will grow up with a brother with special needs. I hope it makes him more sensitive and empathetic and encourages him to stand up for those weaker or have less. I worry that some of the life lessons Brody will learn from Caleb will not be easy ones, but I am happy he will learn them just the same.
My life is filled with more laughter, love and joy than it is with struggle and pain and I call that a good life. All that being said, I couldn’t be the mom I am without my husband, my rock and the dad of our two children. He holds it together when things feel like they are falling apart, he reminds me to be strong when all I really want to do is curl up in a ball and cry, and he always knows the perfect time to give me a hug. Our biggest struggle will always be caring for Caleb who so desperately needs us (being his biggest advocates) and giving Brody the attention he craves and deserves. Although we haven't had the most typical parenthood journey, we make a good team and we wouldn’t trade our experiences for anything.
It has been a very exciting several months for the Salkeld boys! June 16th marked Caleb's 'HOMECOMING' anniversary, Brody turned seven on July 18th, Caleb turned two on July 19th and Brody started 2nd grade on August 29th.
I am excited to share this update as many of our big plans for Caleb that we wrote about in our March blog have now become the reality. While at home, we have been able to wean the number of medication doses Caleb receives daily from twenty-two to eleven. He has transitioned from continuous jejunostomy feeds to full gastric feeds into his stomach that are compressed into five feeds a day and this week his GJ tube was replaced with just a G tube! He is now weighing in at 23 pounds 2.6 ounces. There have been a few setbacks, but as I have said many times before, this resilient little boy keeps fighting. In June, Caleb contracted the rhinovirus (RV), which is the most common viral infectious agents in humans and is predominantly the cause of the common cold. Unfortunately, this virus can have serious consequences on children like Caleb with chronic lung disease and it landed him in the Johns Hopkins pediatric intensive care unit for six nights! His respiratory status declined quickly and he was placed on a ventilator for a few days, but he rebounded and was back to baseline in no time. Since viruses often take several days to confirm, Caleb undergoes many tests each time he is admitted into the hospital so the doctor's can rule out certain diagnoses. He receives x-rays of his chest, an MRI to ensure his shunt is working properly, an echocardiogram to monitor his pulmonary hypertension, and ultrasounds of his stomach. The x-rays of his chest during this admission showed what every parent of a CDH'er fears...a worsening hernia. In August 2015, we had learned that Caleb had a 4th hernia with a small portion of his spleen residing in his chest. Now, in addition to his spleen, his bowel has 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 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! We must put our biggest fear behind us and hope that this surgery does not one day become an emergency.
Therapy and feeding!!! These have become an integral part of Caleb's daily routine. As expected, the physical therapy sessions are the most challenging and his least favorite part of the day. A few months ago, not a day would go by that we didn't talk or think about Caleb's progress. Would Caleb ever pass a toy from one hand to the other, find toys placed near him, roll over, or even sit up on his own? After being evaluated by several specialists, Caleb was given a clinical diagnosis of cerebral palsy (CP). CP is a broad term used to describe a group of chronic disorders that impair the control of movement due to damage to the developing brain. Much remains unknown about the disorder's causes, but evidence supports theories that infections, birth injuries, and poor oxygen supply to the brain after birth are common factors. Also, premature infants are particularly vulnerable. This was a clinical diagnosis based on the fact that at twenty months old, Caleb was functioning at a 7-8 month old. We try not to think about this diagnosis much as we all know, Caleb will write his own story. Caleb is not a huge fan of tummy time and isn't rolling over completely on his own yet, but he is now passing toys from one hand to the other and finds toys placed near or around him. He is on the move and has mastered spinning on his back and literally gets tangled in all his cords within seconds of being untangled. This makes us smile and we will never get tired of untangling! Finally, Caleb can now maintain a sitting position for three minute intervals. Although it seems like it is taking forever, we keep reminding ourselves that if he sits up one second longer today than yesterday, he is making progress. Feeding has been one of our biggest challenges, but we are happy to report that Caleb is now accepting sensation in and around his mouth. He loves to have his teeth brushed and he is taking about a half ounce of puréed foods from a spoon. His tongue is often pulled back toward the middle of his palate and held firmly against it making it extremely difficult for any food to be placed on top of the tongue for swallowing. Caleb is scheduled for a swallow study at the end of October to make sure he does not aspirate while feeding, which occurs when solid foods or liquids "go down the wrong pipe" and enter the airway and lungs leading to respiratory problems and pneumonia. Hopefully, the study will show it is safe to proceed with feeding Caleb by mouth. After a lot of searching, we are so thankful to have found a few amazing therapists who see Caleb in our home privately. In just a short period of time working with Caleb, he has come so far and he absolutely loves them!
Removal of the tracheostomy tube is called decannulation and capping is an important step in the decannulation process. Capping is gradually increased (increments of fifteen minutes) and Caleb is now up to three hours twice a day. 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. He is doing great so far and we will continue to progress at his pace. Although he may be ready to decannulate in the spring, his team of doctors will need to reevaluate Caleb's re-herniation and we will need to make a difficult decision. Decannulating too soon, especially if he may need to undergo another major surgery, could be detrimental, but keeping the trach for an extended time when he doesn't need it could further delay his development. Only time will tell so we will make that decision when the time comes!
Brody is doing well in 2nd grade and between that, Jui Jitsu and fall baseball, he is staying very busy. He is the best big brother and loves having Caleb cheer him on at his games. With the very small window of time before flu and RSV season begins, we are looking forward to getting Caleb out of the house more to enjoy the cooler weather. He has made great strides and we are excited to see how he progresses over the next few months. Most importantly, we need him to remain stable and healthy so we can minimize the setbacks and keep pushing forward!
Just remember to smile today for Caleb because most likely this happy little boy will be doing the very same thing at the very same time…
- August 29, 2015 ~ Emergency Room Visit: G-J Tube Dislodgement
- September 8, 2015 ~ Emergency Room Visit: Confirmation of 4th Hernia
- September 12 - September 14, 2015 ~ Emergency Room Visit: Suspicious Seizure Activity
- September 22, 2015 ~ Weaned off Vent
- October 7 - October 10, 2015 ~ Emergency Room Visit: Trach Infection
- October 30, 2015 ~ Surgery #7: G-J Tube Replaced
- January 4, 2016 ~ Surgery #8: Bronchoscopy, Endoscopy, PH Probe Study & Circumcision
- January 27, 2016 ~ Surgery #9: G-J Tube Replaced
- March 17, 2016 ~ Surgery #10: Bronchoscopy & ABR Hearing Test
- April 19, 2016 ~ International Day of Congenital Diaphragmatic Hernia Awareness
- June 23 - June 29, 2016 ~ Emergency Room Visit: Trach and Upper Respiratory Infection
- July 19, 2016 ~ Celebrated 2nd Birthday
Brody turns SEVEN and Caleb turns TWO
His VP shunt tubing is coiling and now terminates in the left portion of his chest. His left lung volume is small and his left lower ribs are deformed due to his prior CDH repair. Bowel is looped and a portion of his spleen is adjacent to the left heart border.
*When looking at this X-Ray, Caleb's right lung is on your left and his left lung is on your right.*