On May 19th, we celebrated ten months with our miracle boy. It has been an incredibly long journey, but thankfully Caleb has overcome every obstacle and bump along the way. Caleb is a very happy boy and he can light up a room with his infectious smile. His resilience is amazing and we are reminded daily of just how far he has come.
For the most part, since our transition to Mt. Washington Pediatric Hospital on February 11th, things have gone smoothly. However, it would not be Caleb without his share of complications. Caleb has continued to heal and is getting bigger and stronger each and every day. Caleb weighed 3 pounds 2.09 ounces at birth and is now weighing in at 18 pounds 13 ounces. Caleb continues to receive physical therapy, occupational therapy, and speech therapy almost daily and he especially enjoys his play time with child life. Caleb is usually content hanging out in his crib watching his mobile and playing with his rattles and rings that hang from his activity gym. He also enjoys his custom rocker, playing on his mat, bath time, visitors and of course snuggle time. On April 30th at 285 days old, we were finally able to take Caleb for a leisurely stroller ride outside. Since he had only gone outside for transports back and forth to Johns Hopkins for appointments, this was an exciting time for us, but he was a bit unsure of the sunshine. We walked around Mt. Washington, put his feet in the grass for a few mintues, and captured this experience and his reaction on camera. We are looking forward to many more of these firsts for him.
Caleb has had additional follow-up appointments with cardiology and neurosurgery. The echocardiogram showed that his heart is functioning normally and that the pulmonary hypertension that he once had was fully resolved. This is great news but since this is something that can change momentarily, he will be monitored closely and he will continue to take a medication to help relax and widen the blood vessels in his lungs to decrease the pulmonary blood pressure to his heart and improves its function. His head ultrasounds have also remained stable and they have made a few adjustments to the setting on his shunt. He is at the highest setting meaning less fluid is being drained. Caleb will have repeat head ultrasounds every 1-2 months to ensure that the shunt is working properly as these often need to be replaced within six years.
Before leaving Johns Hopkins, we had a family meeting with Caleb's general pediatric surgeon and he had stressed the importance of letting Caleb heal. Knowing the difficulties of what another surgery would entail, he had made the decision to send Caleb to Mt. Washington with a nasogastric tube (NG tube), which is a special tube that carries food and medicine to the stomach through the nose. However, as Caleb began to get better and better each day and there was talk about sending Caleb home, there was a huge concern that the NG tube was not ideal for an at home setting. One of the most common complications of enterrally fed patients through an NG tube is aspiration, which can ultimately lead to pneumonia. The NG tube can become malpositioned during routine use and since Caleb will be on the go when he comes home, this was not something the doctors were willing to risk.
So, after several conversations between Caleb's doctor at Mt. Washington and his surgeon at Johns Hopkins, Caleb was set to undergo his 6th surgery to have a gastrostomy-jejunostomy tube (G-J tube) placed. A gastrostomy (stoma) is a surgical opening made through the skin of the abdomen (belly) and into the stomach and the G-J tube is a “tube within a tube” placed through this opening. One tube ends in the stomach and the other extends into the jejunum (the small intestine). This allows food and medicine to be given directly into the stomach or jejunum instead of through the mouth and can safely be done at home. Hopefuly, the G-J tube will be temporary and will allow Caleb to get enough nutrition to grow, develop, play, learn and recover at times of illness. Caleb's original surgery date was postponed due to him contracting a norovirus infection, which was characterized by a fever and the sudden onset of severe vomiting and diarrhea. This is highly contagious and occurs most frequently in closed environments such as hospitals. Caleb's symptoms lasted 4-5 days and the virus seemed to make it's way around Mt. Washington infecting staff and several other babies. After what felt like an eternity, Caleb's surgery took place on May 5th. The surgery to place a G-J tube is typically pretty quick and simple, but Caleb's lasted about four hours and was much more complicated than expected...of course! Due to Caleb's congenital diaphragmatic hernia (CDH) and the displacement of his abdominal organs, his stomach was not easily accessible. Although the end result was the placement of Caleb's G-J tube, it entailed making an additional incision which was utilized to move his colon and kidneys, correct the malrotation and twisting of his intestines, and a 2nd CDH repair. While performing the surgery, Caleb's bowel was damaged and three centimeters had to be removed. Caleb's recovery was longer than anticipated, but thankfully his respiratory status remained stable. In order to administer his nutrition and fluids while his abdominal area healed, a central line was placed and caused his next setback a few days later. Caleb had suddenly spiked a fever of 104°, which remained on and off for days. It was determined that Caleb had a central line blood infection and he received a seven day course of antibiotics while at Johns Hopkins. In the past, Caleb had developed severe sepsis from a central line infection and as a result, he coded and needed chest compressions. So, as you can imagine, this was an extremely scary time, but once again, he bounced back and made a full recovery. When Caleb arrived at Johns Hopkins for his surgery, he was completely wean off of his pain and sedation medication (clonidine, valium, and methadone) for the first time in his life. The weaning process had been long and difficult at both Johns Hopkins and Mt. Washington so it was difficult knowing that another surgery meant more drugs to control his pain. We are three weeks out of surgery and Caleb is still receiving oxycodone, but the hope is that after another slow wean, he will get his last dose by the end of the week.
Caleb has since been transported back to Mt. Washington and is back to himself again. His therapies have been restarted and they are attempting to bottle and spoon feed again. For kids with CDH, feeding by mouth is a struggle and it could take months to even years before Caleb is receiving his full daily nutrition this way. In the meantime, he will be on continuous feeds through the jejunum port of his G-J tube and medication will be administered through the stomach port of his G-J tube. No matter how long this takes and how frustrating it may be at times, we will continue to live by our motto from the beginning of this journey...slow and steady wins the race!
The talk of discharge has surfaced and it could be right around the corner as long as the little guy can stay healthy! Caleb has been approved for nursing, but typically only night hours are given so we will need to fight for day nursing shifts since we must continue to work. I wish, as his parents, we could take over his care at home but unfortunately this is not an option. Finding a reliable nursing agency is hard, but it is even more difficult to locate qualified nurses in our area that can meet Caleb's needs and who have experience operating a vent and working with a child with a tracheostomy and G-J tube. He will obviously remain Mt. Washington until around-the-clock nursing can be arranged and we can fully trust those individuals with Caleb. This is the most exhausting and stressful aspect of him coming home as we have heard many horror stories of families in the same position. We are continuing to take advantage of the many training opportunities at Mt. Washington to make certain we are capable of acting in an emergency situation and performing some of the necessities such as administering medication and feeds through his G-J tube, changing his tracheostomy strings (holds the trach in place) twice a day, and inserting a new tracheostomy once a week. In an attempt to make things easier for when he comes home, Caleb's doctors are trying to make a few weans on his vent, but only time will tell how he will progress and handle the changes.
More to come soon...
Keep fighting, Caleb and stay healthy!!!