Yesterday was plain awful

It has been a crazy 48 hr. I can’t even write about it too much because I am to tired and I get to angry by reliving it all… let me start with: We came home on Friday, Levi went from barely being able to sit up in a hospital bed to 5 minutes after being home, he was running and playing. I had to clean around his trach and at the hospital it was a three person job because he would get so angry and upset. It took me two seconds and he was fine. He has done SOOOO much better since coming home. The drama began yesterday morning when we found that his feeding tube was out. We aren’t really sure exactly at what time he pulled it but after trying to get him to drink some milk, we decided to go to the emergency room to have them put it back in. Well, that is when the nightmare began. After 7 hours and two failed attempts to get the tube in the right spot, they realized that they were shoving all the tubing in and it was all coiled right were his stent is… where he JUST had surgery. Their solution was to send him to the adult ER to have radiology try to put it in. When I said I wasn’t going to wait another 7 hours for that they wanted to re-admit him into the hospital to get an IV… I explained that he was able to drink plenty of water and I could give him pedia-light . I had promised Levi after the second time that they did the nose tube and we were getting an x-ray, that we were done. Several nurses have told me how incredibly painful it is to have one, and for him with a freshly cut airway and a stent stuck in his throat and a week like he had had… well, it was awful. I seriously cannot remember the last time I was quite as furious as I was yesterday. I was being treated like an irresponsible idiot. I knew that it was not necessary to stay at the hospital, I’m so glad that I didn’t allow it because once he got home, he was able to eat a little bit and he continued drinking plenty of liquids. The Doctor on call spoke with Brian and shared her concerns, and tonight another Doctor called to check on him. While we were in the ER, Brian spoke with the ENT that did the surgery and he was pretty upset about the fact that they had put the tube in the wrong way twice. He pretty much said to just make sure that he wasn’t dehydrated.
I am so tired and overwhelmed, thankful that Levi is doing so well and he is so happy. But putting him through what we did yesterday just really pushed me over the edge. He is healing, playing, being silly, active and energetic. He can’t talk and he does have a hard time swallowing. But every day he gets better at it. I’m giving him protein powder, mineral supplements, multi-vitamin, vitamin C, herbal vitamin, very fattening coconut milk… I hate that I feel like I have to defend what I’m doing for my son and I really hate it when people act like they know what’s best and I’m just a crazy mom… really rubs me the wrong way! So, now I need to take deep breaths and rest… I will try not to lose it tomorrow at the pediatricians office, I don’t think I will, I really like her… I know that after reading this you all will be praying for us, thank you!