Shortly after finishing my last blog, Tim and I arrived at the hospital to spend some time with Caleb before heading to Thanksgiving dinner with our family. During my routine call that morning to the overnight nurse, I was told that Caleb had a good night and he remained comfortable. So, our hearts dropped when we entered his room that morning and saw that he was requiring almost 100% oxygen. Caleb typically requires between 35-50% oxygen so we immediately knew something was wrong, but unfortunately there were no answers. The remainder of that day and night proved to be challenging for Caleb as he was receiving the maximum amount of oxygen he could, his ventilation support was increased, and he was still working extremely hard to breathe. As you can imagine, it was an incredibly long night. As much as I tried to stay positive, it was beginning to get difficult as the bad days started to become much more frequent. Caleb seemed to struggle ever since his 2nd CDH repair on October 15th. They were unable to extubate in fear that he would reherniate again and the decision was made to move forward with the tracheostomy. Although we knew the tracheostomy would not solve Caleb’s underlying issues, we were hopeful that a more secure airway would allow him to progress and be a baby again. The tracheostomy surgery, however, took everything out of him and his immune system began to shut down as he developed a tracheostomy infection and bacterial blood infection. His decline in status was at its worst Thanksgiving night.
Over the last several weeks, we had had many conversations with the NICU team regarding Caleb’s condition and it became clear that “complicated” Caleb had returned. It was becoming more and more difficult to remember the good days and I constantly worried about whether or not he was strong enough to overcome the latest onset of issues. It was hard to not start second guessing the decisions we had made…
Thankfully, the day after Thanksgiving was a better day for Caleb. They were slowly able to wean his oxygen and his work of breathing had settled. That night brought about the answers we were searching for the day before. On top of his other two infections, Caleb had somehow contracted a rhinovirus (RV), which is the most common viral infective agents in humans and is predominantly the cause of the common cold. Although the rhinovirus infection is not as substantial a problem as RSV and influenza, it can have serious consequences on children like Caleb with chronic lung disease. The treatment of this virus for Caleb focused on symptomatic relief and prevention of person-to-person spread and complications. In order to ensure that the virus was not spread among the other NICU babies, Caleb’s room went under contact precautions for a week and a mask, gown, and gloves had to be worn at all times before entering.
Last week, their main priority was getting Caleb healthy again. As the week progressed and he started feeling better, it became apparent that he was a bit too sedated. They began weaning his sedation and pain medication as fast as he would tolerate, but not too fast as he had shown signs of withdrawal from Methadone in the past. Once again, his blood gases, which help determine his adequacy of respiratory function (oxygenation and ventilation) as well as his acid/base balance, were less than desirable. When the blood gases were drawn, he was always in an optimal position, seemed to be very comfortable and clinically, he looked great on the monitor. So, needless to say, the results were extremely frustrating.
On my way home from the hospital one night, reality set in and I realized just how easy it was to get caught up in the NICU life. I was focusing on his blood gases, doses of medication, and numbers on the monitor rather than just enjoying my time with him and being thankful that he was in a much better place than the week before.
I hesitate in writing this next piece as I know all too well how quickly things can change. Finally, the baby boy I have longed for and missed so much has returned this week. Caleb is one hundred forty-six days old and weighs about 11 pounds 14 ounces (chunky monkey to say the least). His blood gases have improved so his vent settings, along with his pain and sedation medications, have been weaned quite a bit, but at a slow and steady pace. Caleb has been very happy, alert and content and is now receiving physical and occupational therapy 3-4 times a week to help promote his growth and sensory development for hearing and vision. He loves watching his mobile, being in his swing, taking baths and of course being held (or maybe we love holding him).
Brody came to visit Caleb this past Wednesday and it was priceless. Brody adores his baby brother and words cannot express how amazing it was to see the smile on his face when he got to hold him for the first time. Seeing the two of them together gives me chills and melts my heart…I look forward to the day when having both of my boys together becomes the new normal.
We are so incredibly thankful for how far Caleb has come and for the good days that we so often take for granted. This is long overdue and my only hope is that Caleb stays HEALTHY and that he continues to tolerate all of his weans.
Grow, get stronger, and keep fighting, Caleb!!!
Over the last several weeks, we had had many conversations with the NICU team regarding Caleb’s condition and it became clear that “complicated” Caleb had returned. It was becoming more and more difficult to remember the good days and I constantly worried about whether or not he was strong enough to overcome the latest onset of issues. It was hard to not start second guessing the decisions we had made…
Thankfully, the day after Thanksgiving was a better day for Caleb. They were slowly able to wean his oxygen and his work of breathing had settled. That night brought about the answers we were searching for the day before. On top of his other two infections, Caleb had somehow contracted a rhinovirus (RV), which is the most common viral infective agents in humans and is predominantly the cause of the common cold. Although the rhinovirus infection is not as substantial a problem as RSV and influenza, it can have serious consequences on children like Caleb with chronic lung disease. The treatment of this virus for Caleb focused on symptomatic relief and prevention of person-to-person spread and complications. In order to ensure that the virus was not spread among the other NICU babies, Caleb’s room went under contact precautions for a week and a mask, gown, and gloves had to be worn at all times before entering.
Last week, their main priority was getting Caleb healthy again. As the week progressed and he started feeling better, it became apparent that he was a bit too sedated. They began weaning his sedation and pain medication as fast as he would tolerate, but not too fast as he had shown signs of withdrawal from Methadone in the past. Once again, his blood gases, which help determine his adequacy of respiratory function (oxygenation and ventilation) as well as his acid/base balance, were less than desirable. When the blood gases were drawn, he was always in an optimal position, seemed to be very comfortable and clinically, he looked great on the monitor. So, needless to say, the results were extremely frustrating.
On my way home from the hospital one night, reality set in and I realized just how easy it was to get caught up in the NICU life. I was focusing on his blood gases, doses of medication, and numbers on the monitor rather than just enjoying my time with him and being thankful that he was in a much better place than the week before.
I hesitate in writing this next piece as I know all too well how quickly things can change. Finally, the baby boy I have longed for and missed so much has returned this week. Caleb is one hundred forty-six days old and weighs about 11 pounds 14 ounces (chunky monkey to say the least). His blood gases have improved so his vent settings, along with his pain and sedation medications, have been weaned quite a bit, but at a slow and steady pace. Caleb has been very happy, alert and content and is now receiving physical and occupational therapy 3-4 times a week to help promote his growth and sensory development for hearing and vision. He loves watching his mobile, being in his swing, taking baths and of course being held (or maybe we love holding him).
Brody came to visit Caleb this past Wednesday and it was priceless. Brody adores his baby brother and words cannot express how amazing it was to see the smile on his face when he got to hold him for the first time. Seeing the two of them together gives me chills and melts my heart…I look forward to the day when having both of my boys together becomes the new normal.
We are so incredibly thankful for how far Caleb has come and for the good days that we so often take for granted. This is long overdue and my only hope is that Caleb stays HEALTHY and that he continues to tolerate all of his weans.
Grow, get stronger, and keep fighting, Caleb!!!
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