Posted 2014-03-12T18:08:48Z

March 12, 2014: Trip #4 to the OR

Sorry we didn't post yesterday. We were so excited to see Edward that we just lost track of time.

The surgery was successful... sort of. The primary objective--to ligate (seal off) the thoracic duct to stop the chylothorax (leaking of lymphatic fluid into the chest cavity)--seems to have been successful. For most of last night, Edward slept peacefully and was even able to nurse three times! We are so happy about how well his pain is being controlled.

Around 4:30am, however, Emilie noticed that his belly was distended and tight. She immediately called the nurse. At this time, both Emilie and the nurse heard air blowing in or out of Edward's left chest tube, and the nurse mentioned she had called the surgery team earlier in the morning (around 2am) because of bubbling in the chest tube box. Edward was still resting well through all this, so we are very glad for that. The nurse called surgery again, and a couple residents came by around 5:45am, but they dismissed Edward's distended belly as the gut "getting used to" having food in it after a week of not eating.

Again, Edward was still sleeping, and his vital signs were fine, so we weren't too worried, until some actual surgeons (Dr. DeCou, one of Dr. Robertson's partners, and Dr. Gibson, a fourth year resident) came by around 8am and seemed more concerned. They thought it was bowel related, after they learned he hadn't passed stool since he got here a week ago, but Emilie explained that his belly had been soft all week and asked that they reconsider before giving him a suppository. Finally, they looked at the x-ray that had been done around 7am, and realized that Edward's left lung was partially collapsed due to pneumothorax (air in the chest cavity outside the lungs), and that he had most likely been doing a lot of mouth breathing in an attempt to get the air he needed, and had swallowed air in the process, leading to the distended belly.

Within the hour, the room was swarming with nurses and doctors, and we were gearing up to go down to the OR once again. Dr. Gibson took out the left chest tube, to keep any more air from getting into the chest cavity, and we wheeled down to the OR. We are very grateful that we had the same anesthesiologist that we know and have worked with several times this week, Dr. Cynthia Theleen. She has been very kind about letting Emilie carry Edward into the OR and hold him until he falls asleep.

Right now, we're waiting for them to let us go back and see Edward. Dr. Robertson is finished with him, and talked to us briefly. He took Edward's right chest tube out, as the drainage on that side has almost stopped. He replaced the left chest tube and this time secured it with extra stitches and large amounts of tape.

As I was typing the above paragraph, they called us back to chat with Dr. Robertson's physician assistant. She said the newest x-ray showed the tube bent down more than she liked, and that the pneumothorax was still there, so she called Dr. Robertson, who was back across the street in clinic, and asked him to look at the film. He evaluated it, and asked her to undo the dressing and pull the chest tube out a little way, to allow it to bend the right direction. The PA was just letting us know all this, so that we wouldn't worry about how long we were having to wait. She says Edward is doing fine.

We'll try to keep you updated. Thank you so much for praying!

In the grand scheme of things, we are so grateful for many, many things--Edward's arm function is great, his tumor is mostly gone, he probably won't have to have chemo, and we have an incredible network of friends around the world holding us up in prayer. These setbacks with the chylothorax, all the chest tubes, and especially his week of nearly continuous pain are incredibly frustrating and can even seem overwhelming until we zoom out and see these larger blessings.

...

By the way, Edward is now in Emilie's arms as we wait in post-op for a room to come open in the PICU (pediatric intensive care unit) where he'll likely stay tonight for observation. Again, thanks for your concern and prayers. God is still good. =)

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March 12, 2014: Trip #4 to the OR

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