The Week in PICU
I woke early Tuesday morning to Nathaniel's suction machine turning on and off. I glanced at the clock. 3:15 am. Rich had woken me when he crawled into bed around 12:40 am. He needed sleep. It was my turn to help the nurse and check on Nathaniel. I have learned over the last two years that there are little indicators of seriousness in how the nurses manage Nathaniel's care. Suctioning by flashlight is evidence of minor intervention. Walking down the hall, I noticed a brighter-than-flashlight glow from the room. The lamp by Nathaniel's crib was on. It announced an increased need for triage by his nurse and myself.
Nathaniel had a fever. A very real aspect of our life is that Nathaniel can go from running and playing like normal to the Pediatric Intensive Care Unit in a few hours.
Nathaniel has been in St. Louis Children's Hospital PICU since Tuesday. He has Para-Influenza 3. A virus that causes cold like symptoms in most individuals. The same virus that causes croup. For Nathaniel, who constantly lives at the very edge of his resources and close to the maximum level of intervention allowed in the home setting, the virus hit hard and quickly took us beyond what we could handle.
Managing his cough and secretions has been the most difficult aspect of developing a treatment plan. It has been a trial and error experience. Nathaniel is currently on the most respiratory support we have ever experienced. In addition to supplemental oxygen, he is receiving four different medications by nebulizer and two different airway clearance treatments. Something every three to four hours.
We use the Vest system and one nebulized medication three times a day at home as part of Nathaniel's baseline treatment plan. We have a second medication on hand to use when necessary. I can manage four treatments in a day and continue to feed Nathaniel through his g-tube. But when he requires more frequent intervention, integrating respiratory support with feeds is difficult to accomplish. Nathaniel's tendency for coughing induced vomiting and the fact that he aspirates complicates a respiratory virus. We can quickly reach a point where IV fluids have to replace g-tube feeds for hydration so the focus can be on supporting his respiratory needs.
An additional airway clearance system being used this week, Intrapulmonary Percussive Ventilator, is new to us. It sends small fast bursts of air into Nathaniel's lungs to loosen and free mucus. It is twenty minutes of unpleasantness; but seemed to make a significant difference. Just in the last twenty-four hours, six days into his stay, Nathaniel's respiratory support is allowing him to rest comfortably between treatments.
Complicating the virus, it has been determined that Nathaniel is also battling bacterial tracheitis. Nathaniel is a cute generous little host to some big bugs. They took up residence in his trachea early; cultures came back positive for some of them before he left the NICU and have continued to culture positive ever since. A lot of children with a tracheostomy are "colonized" in this way. It is hard to determine when there is an active infection based on labs alone. Clinical observations can be more useful than tests when determining a treatment plan for bacteria control. Doctors took sample secretions in the Emergency Room and started antibiotics immediately. Forty-eight hours into our stay, on Thursday, a decision was made to discontinue the antibiotics since everything growing seemed common to Nathaniel. His continued respiratory difficulties were blamed on the virus alone.
Day five of the Para-Influenza 3 is expected to be the hardest. That was yesterday. Yesterday was also forty-eight hours after discontinuing antibiotics. Nathaniel was really struggling. A new lab update came in. There was a new bacteria growing that Nathaniel has never hosted before. I find Nathaniel struggles with bacterial tracheitis the most when a new player is in the game. Everything gets thrown out of whack when a new contender takes the field, right? Antibiotics were restarted. We have been told to expect Nathaniel to be hospitalized through Wednesday morning at least to administer the desired course of IV antibiotics. We see small signs of improvement today.
Our family is doing ok. Tuesday through Friday was rough for me. Rich was sick last week; we assume he had Para-Influenza 3 before Nathaniel came down with it. I did four days around the clock at the hospital by myself. Friday evening Rich was feeling better and I slept at home the last two nights while Rich stayed with Nathaniel.
We had a very busy holiday weekend planned with a wedding, graduation parties, and picnics. Our big boys at home are beyond self-sufficient and have been able to meet their needs themselves or by party-surfing. Rich and I have been at the hospital together. We visited the rooftop garden this afternoon. Almost two years ago now, we spent our first days with Nathaniel there. We have all come so far in the last couple years.
We have utilized the Ronald McDonald room. We have taken short walks outside when Nathaniel was sleeping. Tonight, Rich will sleep at home and I will stay here. PICU is about the safest place in the world for this little guy, but he is still just two. The thought of him waking to strange care givers without Mommy or Daddy present is simply sad to us after all he has been through. We can not take away the suffering he endures. We can sleep on a fold out chair or stand next to a crib all night to let him know he is not alone in his suffering.
We missed church today, but heard the song "I Give Myself Away" was sung. It is one of our favorites. I remember singing it, with tears running down my face, just before Nathaniel came home to us. Though I did not know the full cost, I knew life was never going to be the same. A young man asked on Facebook today what this song meant to others. Rich commented, "For me, Caleb, it has meant giving up the ease of retirement life. To embark on a long journey with my new son. To follow Christ in caring for the fatherless in a practical way. Adopting Nathaniel has meant a shifting in all the plans and arrangements I had, because there was a vulnerable child who had a need and deserved a chance to experience all that life has to offer him. Could someone else have offered him that? I don't know. I only know when Kim and I offered our lives in this way, we were chosen to be his parents. Every time I sing the song, it challenges me, "What are you holding onto that is preventing you from showing the grace, mercy, and justice to this broken world..."
Showing Christ's grace and mercy comes with so many tears for me. Nathaniel's brokenness is hard. This week has been hard. Saying we are doing ok does not eliminate that truth. I will never get accustomed to watching this sweet little boy suffer. It breaks my heart. Psalm 56:8 sits next to my bed and I know the truth of a God who takes those tears and holds them for me. He equips and carries us so that we can engulf Nathaniel in love and joy and happiness and peace.