We went to Macy's Pedi appt. today to discuss the stomach feeding tube. We were hoping she could get it within the next week. You would think by now we would know that nothing happens that fast in the medical world. She will need to see a GI Specialist and a Ped. GI Surgeon to get it approved and it could take 2-4 weeks before we even get in to see them. Her current NG tube (one that goes through the nose) is not ideal. They only last a max. of 1 week and it is very stressful and traumatic for Macy and us to have to keep taking those out and putting them in. Not to mention it makes her oral aversion worse so we are not going to get anywhere with feeding therapy while she has that in.
Today was the first day I was able to talk to Macy's Pedi about her recent diagnoses. It was really hard not to just cry the whole time. It is more difficult to talk about out loud than I thought. I am sure we will have our good days and bad days. Days I want to just forget that anything is wrong, and days I will obsess over it.
Afterward her Pedi appt. we had to go to a medical supply store by the hospital. I had to find out what size NG tube Macy has so her Pedi can get more. I had to explain to them how she has bad "silent" reflux that was so painful that she has develop a fear of eating, etc. The lady commented on how she felt bad for Macy and how people never know what others are going through..............I almost said "you have no idea"....."if this eating issue was the biggest issue we had I would be very happy". But instead I just smiled, agreed with her, and left. One day at a time.