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Russell reads to Joss in his hospital bed. (Joss has a heating pad on one arm and an ice pack on the other, to ease the pain of his IV ports.)
Our apologies for a lack of recent updates. Our last several attempts to get up to our mountain home have been superseded by some personal medical situations.
As we have previously recounted, the past several years have been extremely challenging for our youngest son Joss. In April 2008, after spending a year in a back brace for scoliosis, Joss underwent major surgery to have two rods attached to his spine.
With Joss’ scoliosis finally under control, we thought that the rest of his high school years would pass uneventfully. They did not. An onset of migraine headaches caused us to evaluate everything Joss ate. Particular food triggers include tomatoes, onions, bananas, chocolate and msg. Joss had to give up everything from hot dogs to spaghetti to pizza to top ramen.
Even as Joss continued to struggle with migraines, his body played one more trick on him. For the past three years, Joss has suffered from spontaneous pneumothorax. Due to a blister or “bleb” on his lung, Joss gets air in his pleural cavity (the chamber that surrounds the heart and lungs). This causes his lung to begin collapsing.
“Spontaneous” means that the condition is not caused by a specific accident or injury. We have been told that pneumothorax is especially common in tall, thin people during their teenage years. This is not because they are tall and thin – Joss would not cure his condition by gaining weight. Instead, there is something in the genetic make-up of tall, thin people that also makes them get blebs.
After Joss’ first spell three years ago, which was marked by an acute shortness of breath, he was simply told to take things easy for awhile. After about a week, the problem took care of itself. Unfortunately, it has been recurring off and on every few months ever since.
A line drawing of a “bleb,” or blister on the lung (Wikipedia)
Meanwhile, we had made elaborate plans to go up to our mountain home for the July 4 weekend. Joss invited his friend Rafa and Rafa’s entire family. We were going to attend the American Legion breakfast on Sunday, followed by the Mokelumne Hill July 4 breakfast and parade on Monday. We were going to go ziplining and rappelling at nearby Moaning Caverns.
On Tuesday, June 28, Joss went jogging and felt short of breath. By Thursday, his breathing was bad enough that Gail took him to the medical clinic. They referred him to the emergency room. By that afternoon, he was admitted into the hospital. The pneumothorax was major enough that it was unlikely to heal itself. He had a pigtail catheter inserted into his pleural cavity to suction out the air and prevent his lung from collapsing.
Instead of going up to the mountain, we spent the weekend in the hospital with Joss. Rafa’s entire family also spent a considerable amount of time there, visiting.
On Sunday, July 3, Joss was released, still wearing the pigtail catheter. The other end of the tub was detached from suction and attached instead to a Heimlich valve, which would permit air to continue draining. Joss would wear this device until the following Friday, when he would be evaluated again.
The pigtail catheter and Heimlich valve
As a result, we spent a quiet July 4 at home. Gail made an all-American dinner that we ate in the backyard, and we spent the evening watching the movie “Independence Day.”
With Joss starting to feel better, we made revised plans with Rafa’s family to go up to the mountain the next weekend. While we wouldn’t see any July 4 activities, we could still go to Moaning Caverns. We planned to depart immediately after Joss’ return appointment on Friday, July 8.
A low-key Independence Day – dining al fresco in the backyard (Joss is wearing a sling to keep his chest tube immobilized)
Joss did not get any sleep Thursday, the night before his appointment. He felt that his breathing was getting worse, not better. He did not think the appointment would have a good outcome.
Joss was right. On Friday, his x-ray showed that his left lung was now collapsed 20 percent. Dr. Bloom, the thoracic surgeon, advised that surgery should be the next step.
With a thoracoscopy, the left lung would be adhered to the inside lining of the pleural cavity, effectively eliminating the gap in between. With no gap, there would be no way for air to escape into the pleural cavity. The lung itself would build up scar tissue and close up the bleb. He would remain in the hospital for about four days following the procedure.
An explanation of pneumothorax (Krames Patient Education)
Joss was quiet and stoic, having suspected that this would be the next step. Surgery was scheduled for next Tuesday, July 12, at 3:30 pm at Kaiser Santa Clara.
In the meantime, Dr. Bloom also recommended that Joss return to the hospital over the weekend and be put back on suction, so his pleural cavity could continue draining. Joss declined. He wanted this last free weekend for himself.
Once more, we had to call Rafa’s family and tell them that a trip to the mountain was cancelled. Joss returned home, still wearing his pigtail catheter and Heimlich valve. He spent an uneventful weekend playing his guitar and videogames.
On Monday, we returned to the hospital after Joss discovered a discoloration in his drainage tube. After yet another x-ray, Dr. Bloom had surprising news: Joss’ pneumothorax had healed itself over the weekend.
Joss now had a decision point. With his profile, chances were 50 percent that he would have pneumothorax again. With the surgery, that chance would be reduced to 5 percent. Joss decided to proceed with the surgery.
So on Tuesday, we returned to the hospital yet again for pre-surgical preparation. It was not until 5:30 pm that Joss was finally wheeled into the operating room for the one-hour surgery. It wasn’t until after 8:00 pm that he left post-surgical recovery and was admitted to a hospital room. The surgery was a success.
An explanation of thoracoscopy (Krames Patient Education)
Fortunately, Joss had a private room. Unfortunately, he still had two drainage tubes still inserted in his chest: one to drain from his pleural cavity and one to drain from his abdomen. He also had two IV ports, one in either arm (the right one was hooked up). Fortunately, Dr. Bloom had promised Joss that his urinary catheter would be removed before recovery, and it was.
Joss’ first challenge was to pee within the first day, or face another urinary catheter. He finally accomplished this by pouring water from one cup into another and listening to the sink faucet run.
Joss’ next challenges were to start walking and breathing into a spirometer. The sooner he did these, the sooner he would be released. Before long, he was walking out of his room, down the hall, out of the hospital and into the medical clinic in the other building… with an IV pole still attached. (It was great to walk around the clinic on the weekend, when everything was closed and it resembled a quiet ghost town.) Clearly, Joss was motivated to get out of the hospital.
A drawing of a water-seal chest drain (Wikipedia);
Joss and Gail go for a walk
Joss walked all the way from the hospital to the medical offices in the next building, so he could check out the grand piano in the lobby
Joss was not released within four days. On the fifth day, his pleural drain tube was removed. On the sixth day, his abdominal drain tube was removed. Finally, after a full week in the hospital, on Tuesday July 19 Joss got to go home again.
Joss consented to the surgery because wanted his pneumothorax to be over once and for all before he started college. Next week, he will go to San Jose State University for orientation and class sign ups. He will move onto campus in mid-August.
As with scoliosis, we have recounted this story for the benefit of anyone else who may be suffering from pneumothorax. We are happy to share our experience and insight, as well as provide support and reassurance.
[We have provided more details of Joss’ thoracoscopy surgery here. Be aware that the photos are graphic and not for the squeamish!]
Joss with his thoracic surgeon, Dr. Richard Bloom – a very skilled, friendly and funny man
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