Last Thursday started as a good day. The end of the day... not so much.  Cody and I arrived at the Children's Inn on Wednesday evening. Thursday was to be his check in appointment with his clinical team at the NIH before he headed off to college the next weekend.

Everything seemed to go well Thursday. They were pleased with how well
he was feeling but, they wanted him to do a trial run of daily Kineret injections for a week. They just wanted to see if they could get a slightly better handle on the arthritis pain. And they wanted a few labs redone because his C3 and C4 complements had been low last time.

Instead of leaving to go home Thursday we opted to stay and do his first 
shot there in case he had any reaction. He took his shot at about 4:30 and although it stung like crazy he seemed to be fine.

I went to bed about 10 feeling exhausted and totally dreading the drive home the next day. At 10:30 I was awakened by Cody. He was complaining of severe head, jaw, chest and arm pain... all on the right side. After no slight bit of panic and consulting the paper with Kineret side effects we headed down to the front desk at the Inn. The Inn called the clinical center who then sent Cody and I by ambulance to the local community hospital Emergency department to be evaluated.

It turns out it was not from the Kineret. He just had had a spontaneous pneunothorax. His right lung had collapsed 25 %. They
weren't sure what caused it in fact they said with 50% of cases it was 
never discovered as to why it happened.

Meanwhile back at the Inn they were trying to get a hold of Cody's clinical
team to let them know he was in the hospital.  The hospital admitted Cody
, first time we have not been on the pediatric floor. He was seen by a cardio- thorasic surgeon who decided after speaking with Dr. Barron (who happened to call while he was sitting there~ because she was concerned about some lab results and then had received a cryptic message that he had been admitted to the local hospital) to take a wait and see approach for a day. Apparently sometimes these things recover on there own and because Cody's clotting factor was low they thought it would be prudent to wait especially since his first repeat chest x-ray showed some slight improvement.

Later on Friday Dr.'s Barron and Stone drove to the hospital to visit Cody and see for themselves how he was doing and touch base. They wanted to redo some labs and because Cody had had significant blood in his urine see a Kidney specialist. More clues to a possible diagnosis. So the plan at that point was to hope that his repeat x-ray on Sat would be even better a trend would be established. He could then be discharged and we could come back to the Inn and be seen on Monday again before heading home.

However Saturday Morning's x-ray did not bring us good news. His lung had actually collapsed more almost to 50% and he needed the chest tube as soon as possible. The surgeon was however mindful that Cody wants to be able to head to school on his scheduled date of Sat.the 23rd so he used a smaller tube that would be less invasive and require a shorter recovery time.

So now we wait. Our prayer is that his x-ray this Sunday will show that the lung has re-inflated and he can have the tube removed at the 24 hour 
point. And that he can discharged Monday on time to go to his appointments that they scheduled at the NIH. Then we can be home Tuesday in time for lunch.

We totally appreciate all your prayers. This is turning out to be quite the roller coaster ride for me emotionally.  After Cody's successful trip to the Dominican Republic in July... I was feeling pretty confident about him heading off to collage a couple hours from home. Now not only am I being plagued with doubts.... by the time we get home there will be ever so much to do still to get him and Rachel ready to head out in a much shorter amount of time.

Blessings!
Peyton