Tubeless

Here is the new port. It is not as bad as it looks but we can not give him a submersion bath so he has the antiseptic cleaner that is giving him a rash and cries when we try to scrub it. He has a bandaid over his belly button where they made a small incision.
This is how he looks with nothing on his handsome little face.

It was a long week for us all but even longer for Owen. It all started out on Monday of last week when Owen had to get an echo and EKG, 2 MD appointments, labs. He had an appointment with Dr. Rivera his cardiologist for the echo and EKG. The Echo was great. I always worry that when we get an Echo something will not be working right or there is a new problem. But his echo looked great and showed some promise of a better functioning right ventricle which Rivera was optimistic that Owen may not need another open heart but only time will tell. We will know more as he and his heart grow. We also had to get labs dawn that day and meet with anesthesia for a pre-op consult considering Owen is not your straight-forward patient.

The week went on from there and Owen had not been his normal happy self. Usually at group therapy he is the loud kid, crawling around, and having a great old time. This time (Chelsea's bday) he was Mr. Clingy. He is NOT like that... His OT appointment at home was cut short because he wasn't participating. We were nervous he was getting sick, he had had a fun weekend with lots of kids around, but we found that he was getting his top molars... awesome...more teeth... Actually slept ok for 2 nights then horribly after that...On Friday morning the day of surgery started early. We had to be at the hospital at 0600 and surgery was scheduled for 0745. That meant waking at 430, leaving at 515. We were both up with Owen that night, he was awake from 1-315 and ended up just falling asleep on me until 430 when Chels came in and woke us up in the recliner. Poor guy wants to snuggle but will wake up more if we bring him out of his room...Pre-op was all good with no problems so they did not start his IV until they had him in the OR and sedated. Owen is a little harder than your usual IV start related to having a lot of collateral flow due to his body creating different flow because of his low oxygen in the blood system. Some people may not understand what Owen needed in surgery. So, Owen still is not eating but is getting better with therapy. His eating is not going to get better with the tube going down his nose, irritating his throat, so they surgically placed one in his stomach that goes through the skin to his lower abdomen. Owen now has a port that is located next to his belly button that goes straight to his stomach. This will be able to be removed in the future but this is what he needs to work on his oral aversion. Surgery only took about 1 hour and the surgeon came and talked to us everything went well and as expected. We later were able to see Owen after they transferred him the PICU with out telling us and we were waiting in the OR waiting room and asked when can we come see our son. They a stated "He went to his room about 45 mins ago." That did not sit well with us so I will follow up with that later. When we found him he was crying in his room with his nurse. He was fine once we got there and were amazed that his oxygen saturations were 85-95% and we have never seen them this high we were impressed/amazed. They stayed there throught the whole stay. They have never been this high so we felt some relief for once. The nursing staff in the PICU was great at Kaiser Roseville--all of their care for Owen and us was nice to have. We were able to be discharged home early the next day because Owen was doing so well.

It was nice to be able to go home and not have a long stay in the hospital. On the way home the Maine family invited us over for lunch and Owens BFF Evan bought him a lion to go with his safari themed room. Chelsea and I had our 10 year high school last night and it was located very close to home. We split it and Chelsea wen for the first 2 hrs and I went for the last 2 hours. Facebook has kept most of us all in touch and everyone knows of Owen and his journey through the blog. It was nice to see old friends and re-connect, even for just a short time. All is well with Owen. He slept okay, but he's still sore in the abd from the surgery and has a rash on his chest from a cleaning product that they used prior to surgery. It brings a smile to our face to see his full smile with out anything on his face. He is acting normal I am currently watching a hilarious wrestling match. Owen is into pushing buttons and has figured out how to turn on the roomba. Roomba is a robot vacuum that does a good job but it has the ability to drag Owen and knock him over. The battle is for Owen to turn off the Roomba before it can get the best of him. Who needs physical therapy when you have a vacuum?? We are stoked to be home again, and hope to stay outta the hospital for a loooong time!Thank you all for the continued support and wish us luck with feeding therapy.-Chris