Monday Will and I met with a dietitian to see if some changes can be made to his feeding schedule. She asked us to feed him every 4 hours instead of every 3. Oftentimes kids with NG tubes are on a continuous feed during the night with the help of a pump. As I mentioned before we were still waking up at 1am, 4am, and 7am to hook him up to the pump for a 30 minute feeding. It was never the plan to do so for this long, but he became less interested in eating by mouth instead of doing so all the time . The dietitian wanted him to be weighed at the pediatrician's office on Thursday so she could calculate his growth to see if could still grow well with a decrease in daily calories. The hope was that with less calories he could still grow but also get hungry and have the desire to eat!
On Thursday as we're driving up to the pediatrician's office to get his weight checked for the dietitian he started to fuss and did so off and on as we got out of the car and into the building. Will is usually easy to settle so I was confused about why he got more upset as I tried all the things that usually calm him. When I changed his diaper in the bathroom, he was screaming and had the color changes to his skin, lips, and tongue that we were told would happen if he had a Tet spell (blue/grey/somewhat purple). Tet spells are specific to his heart defect TOF. When the medical technician called us back for the weight check, I asked if she saw how his color was off and she got a nurse. The nurse took him to check his oxygen saturation which was in the 50s. As I've mentioned, a good oxygen saturation is 100 but it's normal for Will's to be in the 80s and 90s. So Will got a little oxygen mask and me and 2 nurses rocked, swayed, and shushed him until he calmed down.
Of all the places in the world to have your first and probably only Tet spell Will could not have been more cooperative by making sure it happened at a doctor's office! That way he had the benefit of monitors, oxygen and most of all HELP. The pediatrician said that she was glad we were there when it happened. I didn't want to argue with her about who was more glad about that so I just smiled and said "Me too".
The pediatrician spoke with our cardiologist (I am so glad that they already know each other and have for years) and they decided we would go to the hospital to be admitted again. To keep me from having to drive while unable to keep an eye on him they suggested we both go in an ambulance. This is the funny part of the story because they wanted me to keep holding Will since he was calm. So I get on the stretcher sitting straight up with my legs straight out in front of me. Will was lying in the crook of my arm like a bouquet of roses. When it was time to push the stretcher, they raised it so high in the air I was looking down at the top of everyone's heads. I think the EMTs were bored because all 6 of them followed us the entire way. The whole spectacle was like a mini Teapot Festival parade. The elderly people smiled and waved and of course I waved back at them. All that was missing was a marching band and candy for me to throw at the onlookers waiting to see their dermatologist.
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| Will's parade route |
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