The morning after my last post CHLA had done additional studies for Ethan's digestive system. They did a lower gGI study and it showed that he has acid reflux. They were still talking about discharging him either Wednesday night or Thursday morning but wanted to perform an upper GI study Wednesday morning. The doctors said that as long as the study didn't have any other abnormalities we would be going home.
On Wednesday Ethan was in good spirits and I was excited about going home. Around 1:00 pm the nurse practitioner came into the room to say that Ethan would not be discharged as he did have some abnormalities but additional testing was necessary. Two more X-rays were completed and a few hours later the attending came in to tell me that not only did Ethan have severe acid reflux but he had a hustle hernia and his intestines were shifted to the right. He said that Ethan would require another surgery.
As you can imagine I was devastated and in shock. The attending also said that he was going to stop all feeds by mouth and restart IV nutrition. At this point Ethan hadn't thrown up in two days and was slowly working up his feeds. It is true that he had lost weight but he was throwing up so much before that weight loss might be expected. I again stood my ground and said that I was going to continue breast feeding. This didn't make the attending happy.
The next question was then where was Ethan going to have his surgery? Because it would be a general surgery it could be done at Kaiser and we had a choice of going across the street in Los Angeles or going down to San Diego. Since Ethan's first surgery, his esophagus repair was done at Kaiser in San Diego I asked if the same surgeon, Dr. Vasquez, would be the person performing the operation since he had exceeded our expectations the first time around. They said he would!
Wednesday night Mike came up to be with Ethan and I. Thursday morning we took Ethan for a walk in cvacute. We sat down the hall on a bench under a window. Ethan was in his stroller and as I looked at him I noticed that he had a rash on his leg (the good one) the other was bandaged up so I couldn't see if it also had a rash or not. We went back to Ethan's room and called for a doctor. They took off Ethan's leg wrap and the rash was also on his right leg, on his stomach, arms and back. They only change was that they had started him back on TPN and the lipids! Well obviously Ethan has an allergy to lipids. They immediately discontinued them and gave him Benadryl which eventually made the rash go down. Ugh! Wouldn't they have figured he was allergic after seeing the reaction in his foot and leg?!
At about 2:15pm the transport team arrived and by 3:30 Ethan and I were headed down to Zion. The ride in the ambulance was super uncomfortable for me and I ended up getting a little car sick. Ethan did fine in the beggining but then cried for about 45 minutes once we got stuck in traffic. We arrived in San Diego at about 7:30 pm.
Early the next morning both Ethan's surgeon and the cardiologist came to visit. The surgeon stated that typically he did not operate on hiatel hernia's alone. He may operate on the reflux but only if it was so bad that after each feed Ethan was vomiting and had lost a significant amount of weight and then while he was in their would repair the hernia. Fortunately for us this was not the case, Ethan was holding down all of his breast milk and some food. He said that he was comfortable sending us home with weekly weight check appointments. Our cardiologist was more than pleased with Ethan's heart function and couldn't even hear the small VSD that the doctors at CHLA heard.
Best news came at about 11:30 am- We would be discharged to go home! We finally got to go home Friday September 14th!
Last week was a blur. I think we had about 3 doctors appointments and I've been trying to schedule physical therapy. Ethan is doing so much better and is thrilled to have been reunited with his brothers and sister. He is eating up a storm and I am looking forward to his weight check tomorrow. Last week he was at 16lbs 7 oz and I'm hopeful he is back to his pre-op weight of 17lbs.
Now the big project is to gain weight, continue with appointments and plan a BIG Birthday party for October 13th!
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