Cardiology Visit

I took Gracie in to see Dr. Su today. She got her usual x-rays, weight and saturation level check. She put on a little weight and weighed in at 14 pounds!! She was 12 lbs. 14 oz. last time, I think that's the most she's ever gained in one month. Maybe the increase in milk has done her good! I was a little surprised that she had gained weight because she is still throwing up 2-3 times a day. Her sats were 75% at room air. Not great but not terrible. She seems to be higher at home. She was 80% when she got her shot for RSV a week ago at the pediatrician's office.

Dr. Su said that we have pushed Gracie out as far as she can go. They are going to try and schedule her heart cath on a Tuesday and her surgery on a Thursday so that they can admit her one time and get the whole thing over with. They do this for people who come from out of town and we all thought this would be the way to go based on how long it took her to recover from her last heart cath. They have their big meeting every Wednesday morning with the surgeons and cardiologists. With a Tuesday/Thursday cath/surgery schedule, they will have a chance to talk about the results of her cath and decide how to proceed with surgery the next day. Dr. Su said we would hear back on a surgery date within a week. He thinks we will be looking at the beginning of February. Dr. Su does think she will need the Nissin and a G-tube. The plan for now is to have her heart surgery, go home, see how she is doing with her reflux and then come back for the G-tube a few months later. So for now, we will continue to try and keep Gracie healthy and enjoy being at home and not out traveling to Primary Childrens every day in the cold and snow!!

p.s. Gracie has started to take milk sometimes from a sippy cup!! I got a special kind of cup from Walmart (Nuby brand) that let's you push the bottom up and squirt the milk into their mouth if they don't know how to get it themselves. She now can bite down on it and milk comes out. It works that way because it is not one of those non spill kind of sippy cups. For all you heart moms: it comes in a set with a spoon attachment and bottle with a push up bottom also. It's about $5.50. (I got the tip from Owen's mom!) Anyway, this is MAJOR improvement. When I give her her medications, she opens her mouth and acts like she wants a drink (because we have used a syringe to give her water/milk before so she recognizes the syringes and shows us she is thirsty) So now I will immediately go get her new cup and give it to her, trying to break her of the habit of the syringes. So it goes like this: she drinks, cries REALLY loud, coughs, takes another drink, cries REALLY loud, chokes and sometimes throws up. You wouldn't think it, but it is SERIOUS progress for her to even act like she wants to drink, let alone, drink and actually swallow and come back for more!! I just wish she had the whole swallowing technique down a little better so she didn't cough, choke and throw it all back up! So we will keep plugging along, hoping some day in the far future, she won't have to deal with any kind of tube anymore!!