Just an update...

I guess sometimes I should just forget what I 'plan' to do and just realize that I will never get the things I want to do done. EVER!!! It's just not in the cards for me to make a to-do list and actually do anything on it! I had great plans on Wednesday to get my house really cleaned. I had nothing to do but an appointment at 3pm. That should give me lots of time to get everything finished, dinner done and celebrate Jace's birthday before Tanner and I took off to Salt Lake so we could be there for Nathaniel's 8am FEES test. Nope... it wasn't in the cards! I decided to get started on the kitchen that was still a mess from the night before because, it seems that Garrett and Jace thought we were joking when we told them they were on the chore chart for Tuesday night to do the kitchen. I mean, they eat here, but why would they believe they needed to CLEAN anything! ;-) Kailee wanted to get Nate bathed and dressed. She kept commenting that his feeding tube looked more yellow. As we are getting him ready for the bath, we realized that it looked more yellow because the purple mark that is supposed to be at his nose was down to his knees! Somehow it had come out during the night. We think it was from all of the coughing and gagging he had going on from the sickness/gunk! Of course that meant turning off his feeding and heading to the ER to have it put back into place and an x-ray to determine if it is in the proper place. And you know going to the ER means WAITING, WAITING and more WAITING!!! When they finally got around to putting it back in (which wasn't fun to hear him gagging and screaming... I don't know, call me crazy but as a mom, listening to your child cry is NEVER fun!) we had to wait an hour before they would x-ray to make sure it was placed right. And then we waited to have the x-rays read and then FINALLY, several hours later we were free to go. I have to pump every few hours so I rush home to pump and then race back to town for the meeting I had to be at. Spent an hour there, got home and pumped again and tried to pack while dinner was going. Of course that was one of those days when the 19 year old wanted to be 9, the 3 and 5 year old had the run of the house and life was complete chaos. I had asked them to dry some clothes and they didn't. I was not in a happy mood. We finally got to Utah, and got into our hotel room by 1am. I got a couple of hours sleep before I was up and headed to Primary Children's for Nate's appointment. And I have to be honest and admit that I HATE these appointments. I just feel like I have to fight for every tiny step forward we make with him. Like digging into info on the internet and learning that his meds needed to be adjusted as he gained weight. I had to call the doctors and fight for it to be adjusted. And when he stopped gaining weight. Everyone blew it off... wait till next week, probably a fluke. Ummmmm... NO, it is because he came home a 6lb baby so they adjusted his food amount by how much he weighed. No he was a 9 1/2 lb baby and stopped gaining. Maybe, just maybe he needed more food????? A no-brainer to me, but maybe when they became doctors instead of parents they lost their brains??? I don't know! But I had to insist that they re figure his amounts. He went from 22 ml/hour to 27ml/hour. That seemed to do the trick and he is gaining nicely again! He didn't pass the FEES test but his tube had come out several inches again. He did not pull it out. It came out in the night while he slept and his hands were covered. He coughs and gags from the mucous in the night. I'm sure that has NOTHING to do with it. After his FEES test they take us to x-ray. A 20 something year old tech who I'd be willing to bet has NO children asked me about his tube. I told her that three times in the last week the tube has had to be replaced. She then tells me in that voice... "I'm going to give you some pointers so you can be a good mommy and keep him from pulling his tube out." Okay... so maybe I am just hormonal, or maybe it was because I had had maybe 4 hours of sleep in the last 48 hours, but that GOOD MOMMY remark just bugged the heck out of me. Before she could say another word I said, "Well, for the record, he DID NOT pull the tube out. I have long sleeved t-shirts that cover his hands and not once did he pull on the tube, but the coughing and gagging may have had something to do with it.... and second, he's my 15th and I can honestly say I have never been accused of being a bad mommy!!!!" She stared at me for a minute and then had me put him on the table for the x-ray. Then she tells me that some of the 'good mommies' will safety pin the sleeves of the shirts to the pants so the children can't move their arms up to their face to pull on the tube!!!!!!!!!!!!! I told her that THAT did not sound like a good mommy to me!!! Okay, call me stupid but to me, he is going to have enough to deal with learning how to eat again, to swallow, to do normal things... why would I pin his arms down and cause even more developmental delays. SHEEESH! Then, THENNNNNNNN.... it's our turn to go in and see the doctor who will not put the tube in the proper place, but replace it with a new one! I didn't know this. The guy getting things set up tells me that this doctor likes the babies to be wrapped. He got a board out, and then proceeded to wrap Nate's legs with a big Ace Bandage. Then he wants me to hold his arms above his head while he wraps those too. I have to admit my emotions were on the edge and I was not happy about it. So Nate is crying and I am going to give him his binkie because I knew he would settle down. Before I know what the guy was doing he had said something about knowing just how to calm babies down and he plops his binkie in strawberry syrup. HUH??? He had more on the binkie than they had given him during the FEES test that he had FAILED... meaning the milk had gone down onto his vocal cords and he was aspirating it into his lungs. And this MEDICAL professional was no dumping strawberry syrup into my baby's lungs??? I said, "He has dysphasia, he cannot have anything orally!" Before I even finish my sentence he does it AGAIN!!! By now Nate is kind of gagging and breathing hard! He then asks me why the tube, is it for nourishment. NOURISHMENT? Was he for real. Um yes, you see he can't have anything by mouth so it's either this or he starves! REALLY... do they usually give people NJ tubes for the fun of it? I turn to put his clothes and my jacket on a table and he gives him more strawberry syrup. I finally just hold Nate's binkie and calm him by rubbing his belly. Trying to pat his back and help him get everything cleared out. The doctor comes in and talks and can tell I am really upset about this and tells me it would be fine to wait out in the hall. I did, and hear Nate screaming bloody murder! I am not happy about any of this. Pretty soon doc comes out, says it is fine and I go back in to find this man sticking Nate's binkie back in his mouth DRIPPING with this syrup! Nate is gagging now and I jerk the binkie out and tell the man that he CAN NOT, absolutely NOT have anything like that, that he aspirates!!! He says, "I probably put too much on his binkie." Ya think???? I am scared out of my mind that I would have to haul him upstairs and insist they put him on oxygen till he clears his airways. I had left the oxygen at the hotel. I was shaking by the time I got out of there!

We go Monday to the GI clinic and to speak to a dysphagia specialist. I hope we get some answers and some kind of idea about what we are going to do for him. My heart aches. I want him healed. I watched really sick kids in Primary's and my heart aches for every sick child, every parent who has to take their child in knowing that sometimes the cure is worse than the disease! But this is MY baby, and though we have so much to be grateful for... it doesn't make the desire to have him completely well any less!