When we got ready for Owen's procedure to fix his hernia, we were told the recovery would be 3-5 days. Based on our past experiences, we went ahead and assumed it would be at least 5 days. The operation was on Thursday and we figured the middle of the following week would be our discharge goal and we would be home and moving forward. As the case has been throughtout this entire journey, it was way more complicated than we thought.
Owen was progressing post surgery and everything looked good the weekend after the operation. We started to test his feeding tolerance, which was the ultimate hurdle to going home. He had to be able to handle 24 hour continuous feeds before we could get out of the hospital. Once he reached this goal, we could work on compressing his feeds at home. All his feeding would be done through the G tube, which was on his side and went directly into his stomach. We had to wait for Owen's gut to wake up before we could begin the feeding process and we were told that during an operation on the stomach/intestines, they sort of go into shock and take a few days to wake up and begin working.
On Sunday, we changed the way his G tube was draining to see if Owen would tolerate his own secretions. All of his feeding tests were over 8 hour periods. If he did well with each step after 8 hours, we would move on to the next step. He seemed to do pretty well with the first step of tolerating his secretions. He was coughing up some stuff that mostly looked like mucus/spit, but he didn't seem to have much trouble with it. The next step was to feed him Pedialite at a rate of 10 MLs per hour. The Pedialite would absorb in his system very easily. After 2 hours on the Pedialite, Owen threw it back up. This wasn't unexpected since it was the first time he was eating and the doctors said his gut was not fully awake. We continued to try the Pedialite and he continued to vomit. Then overnight Monday, Owen tolerated the Pedialite for 8 hours. He spit up at the end of the 8 hour period, but it was determined that we could move to start feeding formula.
We began to introduce formula, which is a little heavier and tougher to digest, at the same 10 ML/ hour rate. He was vomitting pretty much every 2 hours. His bowel sounds were still not completely active, so we just kept trying to see if he would improve and tolerate the feeds better. He continued to vomit fairly regularly. I think they had to call in extra laundry staff to deal with all the sheets and towels that we were going through.
Overnight Tuesday, he actually tolerated his feed for 8 hours. He promptly vomited at 8 hours, but this was seen as progress and it was decided to push him a little bit more with 15 MLs an hour. He began to vomit regularly with the increase. It just seemed like the feeding wasn't quite working for whatever reason. Being almost a week removed from the surgery, we were expecting to see a little more progression.
Around 11pm Wednesday night, while Owen was sleeping, his heart rate started jumping all over the place. It started to jump up close to 300. He had slipped back into the arrythmia that he encountered after his first heart surgery in July. We were quickly shipped back to the CICU. Owen was stabilized and was given some medicine to slow down his heart. He finally came out of the tachycardia early Thursday morning. It was a scary moment to see Owen going through this again. It was also deflating to realize this was not going anywhere near according to plan. One week after surgery, when we thought we would be home 3-5 days later, we were now back in the CICU no closer to going home than when we started.
Owen spent the next two days pretty much sleeping. Owen is such a happy baby after all he has been through and to see him sleepy and lethargic for 2 days straight was very difficult. They tried feeding again at an even lower rate of 5 MLs and he still wasn't tolerating so on Friday afternoon, we were ordered for an upper GI series. They were going to put some dye in through his G tube and see where it went. They took X-rays after the dye was put in and it was quickly evident that nothing was draining from his stomach. Everything was sitting and collecting until he threw it back up. Because of this, all medicine and feeding through his stomach were stopped. Over the weekend, Owen's surgeon stopped by to talk to us and was very apologetic about how everything had gone. He told us that in his 20 + years of operating, Owen's anatomy is the most complicated he has ever seen. Unfortunately, there are no awards for that. He told us that they are working to figure out what is going on. The next step was to get a scope of his upper GI and to place an NJ tube through his nose which bypasses his stomach and empties into his small intestine so he can begin feeding. Unfortunately, they don't do those procedures over the weekend and the earliest we can get in was Tuesday. The procedure is fairly quick but it still requires Owen to go under general anesthsia and have a breathing tube placed.
Owen has not had anymore arrythmia issues since the scare on Wednesday night. He has slowly gotten his personality back, but is still frequently in pain and not happy. It has been pretty frustrating to go through this again, especially when Owen was doing great before the surgery. This procedure has just seemed to make things worse and to add to the mounting frustration, we were not able to attend Owen's Grandma Juju's birthday party and will be spending his first Christmas in the hospital. We are hopeful that the scope on Tuesday will provide us some clearer answers and help us get Owen back to the happy, growing boy he was before this operation.
We would like to thank everyone for the support we have received in this difficult time. We would especially like to thank Chas Allworth and Ashley Spataro, Ed and Cheryl Polaski, and The Levin's for sending some thoughtful gifts for us and Owen. Owen is truly lucky to have so much love and support through these tough times.
We will keep everyone updated as we learn more. Thanks again for all the thoughts and prayers.
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