Posted 2014-03-10T20:57:17Z

March 10, 2014: Another surgery

I think the Lord gave us a calm, quiet Sabbath to build up energy to handle Sunday. Actually, as I write this on Monday morning I'm so tired that I'm struggling to recall Sunday.

Edward slept in his crib on Saturday night calmly at first, but increasingly fitfully until 4:30 Sunday morning. At that point, he started all out wailing and I got him out of bed and held him in the recliner from then on until about 1:30 Sunday afternoon, in the process pumping far less than normal.

Let's go back to Sabbath afternoon. Edward's nurse changed the soaked dressing on his chest tube and I noticed that some tape that had been used on it previously was pretty far down the tube. I wondered whether it was pulling out, but the nurse seemed ok with it, and I didn't ask questions. His chest tube had been leaking, but everyone had been telling me that was expected with such a wiggly little guy.

In retrospect, we think that his chest tube had been pulled pretty far out since Sabbath afternoon, and that it came out even further Sunday morning around 4:30, when Edward had started really complaining. Unfortunately, we tried several other things before the nurse and I heard a wet, suction-y sound coming from Edward's chest tube around 9am. Under the dressing, it turned out that the tube had pulled out enough that one of its holes for collecting stuff from the pleural space was now out collecting air. The nurse quickly covered it with a large new dressing and went to call the surgical team to come check it out.

Dr. Theleen (anesthesiologist with a pain management fellowship under her belt) came and delivered a bolus of pain medication through Edward's epidural, with the understanding that the surgeons would be along shortly and he'd need extra pain medication to handle the pushing and prodding of the chest tube they were sure to do.

The surgeon, Dr. Schlatter (rhymes with slaughter--I kid you not), didn't show up until about 1:30pm (over four hours later). The reasons for this are unclear. He told us he came about 30 minutes after he heard we needed him, so there was obviously a breakdown in communication somewhere. He thinks our charge nurse may have been calling the wrong place to find him. In any case, after nine hours of holding a crying, moaning baby, I was feeling pretty overwhelmed and helpless. The surgeon put a lot of betadine all over the tube and tried to advance it back into Edward, but it would not go, and he ended up just pulling it out. The stitch that was meant to hold it in place was still there, but it looked like it was way too close to the end of the tube, even above the first hole, so Dr. Schlatter thinks the tube must have just worked its way past the stitch.

After that, I handed Edward to a volunteer (God bless hospital volunteers!), changed my clothes (there was betadine, chest tube fluid, and Edward's urine on them), and took a little break. I felt guilty for taking a break, because Edward couldn't take a break from his pain, and it felt disloyal for me to just run away from it, even briefly. Nevertheless, I did, and it was much needed. Kameron and my mom and Henry arrived right about then, and it was very good timing.

I want to pause here to mention that sometime while Edward was tossing and turning on my lap I checked Facebook and saw this wonderful and timely quote posted by my friend Midori:

"Never for a moment should we allow Satan to think that his power to distress and annoy is greater than the power of Christ to uphold and strengthen..." – Ellen G. White, In Heavenly Places, page 74

As I was talking to my family and crying in the hallway, I thought of that quote and it brought me great comfort. Christ does have power to uphold and strengthen!

Kameron held Edward while I wandered around downstairs with my mom and Henry. Henry especially likes the revolving front door of the hospital, so we took several trips through it to get some fresh air outside, before we had to go back upstairs, so they could get ready to take my mom to the airport.

It was very hard to say good-bye to her, and she hated to leave, but I know she'll be back if we need her. And we're so happy and grateful that Kameron's mom could fly in last night to continue the help!

When it was time for bed last night, Edward cried and cried if he was put down. His pain was so evident that the nurse called anesthesia to see if anything more could be given through his epidural. The answer came back that nothing more could be done. Even with me holding him, Edward was clearly in a lot of pain, pushing a way and guarding. He wouldn't relax, even while I held him. Eventually, Edward fell asleep on me around midnight. He had been awake almost continuously since 4:30am. He and I slept in the chair for a couple hours and then the nurse rearranged the room, so that Edward's lines would reach my bed and I held him there the rest of the night, which was more comfortable.

Edward has been sleeping almost continuously today. I don't know for sure, but I think it's possible that his chest tube pain has finally subsided and he's making up for all the sleep he has been losing all week.

Because his chest tube is now gone, we can no longer do the feeding test we were supposed to do today, so Edward is still not allowed to eat. They did an x-ray last night and another this morning, and the surgeons say fluid appears to be increasing, so surgery to do the thoracic duct ligation is scheduled for tomorrow (Tuesday, March 11) at 12:30pm. Dr. Robertson is going to come by in the morning to discuss a better pain plan going forward. Edward will have a chest tube in each side, so the potential for pain will increase.

I'm going home, now, to have a normal nighttime routine with Henry while Kameron stays here with Edward. Then I'll be back for the night.

Thank you, in advance, for your prayers. We ask specifically that you pray that the surgery will be successful at stoping the chyle leak (this type of surgery has an 80%-90% success rate), that there will be no more complications to keep us here longer, and that Edward's pain will be managed more successfully after this next surgery than it was after the first.

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Emilie DeVasher 46 Comments

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March 10, 2014: Another surgery

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