Ethan had his 1st cardio appt on 1/7/12, since getting discharged from Children's Hospital. I will never complain again about packing diaper bags!!! We had everything in tow because we had no idea what we needed. Oxygen, back up tank, pulse ox, suction, tube feeding pump and supplies, my pump, bags and bags!! LOL but it was smooth sailing because we had everything :)
Ethan is a whopping 12lbs 6oz and 24in! He has come along way!! I love that office. We don't have to wait very long and we are always taken back right away.
First we met with dietician, Kirby. Nothing but positive feedback! He is gaining really well. We even got to cut out one of the night feeds! We are just adding that feed to the rest of the bottles during the day. So a solid 5 hours of sleep is AMAZING! Then we met with our OT, Michelle. God love her, she met with us every single day when Ethan was in the hospital. He just would not eat and she was pulling tricks every which way. So since we have been home he is eating at least 4-5 times a day by mouth and 10-30ml. We will take that!
We soon saw Dr. Weller! Boy was I SO glad to see him. There is nothing more frustrating than having too many hands in the pile- that's what I felt when we were in the hospital. I felt no one wanted to own up and give us a plan, a date for surgery, what to expect now! Dr.Weller said on paper Ethan doesn't sound well at all by any means. He looks better in person! He said he wanted Ethan to have his heart repaired first rather than the intestinal surgery and gtube. He is too fragile to have anything else done. Hmmm exactly what I have been thinking and saying! He said he needs surgery ASAP. But we still have to wait for him to be cleared from the rhino which is about 6 weeks from the last positive. His was Dec 13th. So they're looking for surgery to be the end of the month. He will discuss things with the surgeon and hopefully we will hear something this week or next!! He paused for a very long time and said I just want you to know if Ethan tests positive for anything else on the viral screen..... Well we will have to discuss it at that time but it will not be good. Ethan needs to have his repair.... Ugh the pit in my stomach is back again!?!
So we keep everything the same. Lasix, enalapril, aldactone are his big heart meds. Crazy he is on so much! Plus 4 others!
We go back in the 21st for a follow up and to have a sedative echo so they can get better pictures of his heart.
I'm just so ready to have this behind us. The thought of surgery really hasn't set in: I just want him to strive with out breathing so fast, sleeping all the time, I want him to eat!!!!!! He is still doing well for every bring he is going through. He is rolling from back to his tummy :) He gets stuck with his arm under him and panics! He is starting to laugh :) smiling more at us :) playing with his toys :)
We are so blessed and God is good!