Image by thinkpanama via Flickr
Today was the fourth set of surgeries in three weeks, with one being scrubbed due to access issues, WoW! Elias has been such a trooper as always with all that he has been put through. We knew things were going to be busy, but we had no idea it was going to be this intense. I will expand on that idea a little more later in the update. As for this day’s surgery set we were finally getting the G-tube revision that has been eluding us, we also were repairing a tracheal blind pouch that was located at Elias’ Tracheoesophageal fistula repair site. They also tacked on to the surgery a cystogram, which is an alternate study for the failed VCUG to examine the kidney reflux and fistula potentials. The surgery was slated to be about 4 hours for all the procedures, but was finished in slightly more than three! That was positive news. The main reason for the extra allotted time was for the tracheal portion. There was a chance that they would need to open Elias chest for the procedure if the endoscope was not able to get appropriate access. Thankfully, this was not necessary. Elias did beautifully through all the segments holding steady vitals through some stressful events. He also came out of recovery at an amazing pace. He is very tired still and slightly uncomfortable , but we have not had to give any pain management medicine to this point. The G-tube and the tract was in the duodenum right at the pylorus muscle, so Dr. Putnam was correct in what he saw. The surgeons stitched a few layers to seal that tract and were able to use the existing stoma (opening) in his stomach to create the new and hopefully improved tract in to the actual stomach. They are holding feeds until tomorrow afternoon sometime and will determine if they should begin at a slow rate or if it needs more healing time. We should be able to proceed with slow feeds tomorrow. After six weeks or so we can revisit putting a Mic-Key button back.
The cystogram did confirm the kidney reflux so we will continue to monitor and give prophylaxis antibiotics for potential urinary tract infections. No fistulas were found in the bladder area which was the area of greatest concern, so that is positive. There could still exist other areas that this particular study does not show, but as we stated the bladder area was the most worrisome area. Not much will be done to fix the reflux, but it gives us a clearer picture of what is going on and how it might impact the overall care plan.
The tracheal pouch was the biggest and most intense portion of the day’s surgeries. Dr. Rutter is a very fun doctor. He has a British accent that makes me think of renaissance England when he speaks. He is very eloquent when he talks and is very confident. You can tell why he is one of the best in the world at what he does, but he is not at all one of those egotistical types. He is very straight forward but tries to keep it light too. He was pleased with the way the procedure went and expects things to heal well. We will go back into the operating room on Tuesday to change the longer trach tube they placed today that is acting as a stint to help the tissue that remains from the area he clipped sort of become a part of the trachea. In his diagram, and he admittedly said he is the worlds worst artist, to give you an idea looks like a tiny bubble attached to the trachea. They will take a look with a scope at that time to evaluate the repair and determine the appropriate trach size. We will be there for several days without question and then we will have a better idea of how much longer. He echoed the sentiments that Elias has achieved becoming the center of attention and kept them very busy and on their toes. He told us that Elias has been extremely busy and while it should level out some in a few years we are still very much in the middle of this period. Basically meaning there is a lot more they intend to do with Elias. We discussed a off the cuff timeframe for decannulation (removing the trach) and his response was that he felt Elias was still a few years away from beginning that process. There are several key issues that he needs to get beyond and prove that he can be ready. This was sort of dismal news as we hoped that Elias would only have the trach for a year or two. Although we also have said we would be cautious during the process based on our experience with the Vent and extubation. While it was not easy to hear the reality we can not honestly say we were surprised so we can not truly be disappointed.
Now let me share with you all how our day all began. It was the sort of experience that we spent months training for in the NICU. It also reminded us again, with the agreement of his doctors, that Elias needs someone watching over him 24/7 with the trach. We were awakened by Elias, not by his pulse ox alarm, but a very unfamiliar sounding cry. It did not sound anything like Elias, but it was a babies cry. Katharine had already started to groggily investigate and prepared to suction and I was making my way slowly towards being awake enough to go in Elias room just to make sure everything was fine. Elias’ trach tube had come out. It was controlled chaos as we snapped into action remembering the training. We could not get the 3.5 tube in so we moved on to the 3.0 and also struggled. We had no idea how long the tube had been out and were about 10 seconds from dialing 911! Then fortunately Elias coughed and it slipped right in. We secured the new tube and then it hit us. The adrenaline was flowing and the heartbeat was thumping. We had the dreaded emergency trach change. While we are glad things were successful we do not want to ever repeat that scenario. However, we were fairly calm and poised, until afterward when we just sort of broke down a bit, but at that point Elias was safe. Katharine told Elias right then and there that was his dramatics for the day, he was done. Obviously thinking of the impending surgery today. What had happened was the trach collar for his humidity mist had become lodged underneath the ties that hold the trach tube in place. This happen because Elias tosses and turns and changes positions very frequently. It had worked its way underneath and one flip just literally popped the tube right out. If someone had been awake and alert Elias would have been monitored closer to prevent that from happening. Like we said we have no idea how long the trach was out, but it could not have been too long. That was quite the way to start the day and we were able to bypass the coffee pot because we were awake! Of course Elias, being Elias was laughing and kicking not even 10 minutes afterward, the little stinker! God love him and his wonderful attitude!