The last time we were in New Orleans, they scheduled Evie for 2 follow up appts to return. We had to see her Geneticist and Hematologist. Luckily they were both on the same day. So we headed back down there, and made the long 6 hr trip, with Evie, again.
The ride down there was horrendous. I say this, not because Evie was overly fussy but because we ended up in the ER. Her Mic-key button came completely out. Thats right folks. I have never changed one, and I didn't have the right materials to do it, so Annessa, our nurse, couldn't even put it in. Praise God we were only 15 min outside of Alexandria when it happened, and my in-laws live there, so they gave us directions to the nearest hospital. Apparently, the hospital there, had no experience with G-tubes, because they had to get Annessa to put it back in. So we were there for 2 hrs, 30 min waiting, for Annessa to get the right type of syringe to re-place it. They didn't even have any clean, new ones to give us. Thankfully, the reason it came out wasn't because it was broken, but there wasn't enough water in the balloon to keep it in there. So, it simply popped out. Yes, she was bleeding and screaming. It was soo incredibly scary for me, and Annessa too, because we were afraid of losing the tract that goes from the Button to the Stomach.
Here is a little background information on the G-Tube Mic-key button. The button that is on her belly is attached to a tiny balloon that is filled with water. Apparently, eventually, the water can evaporate or something, causing the balloon to deflate. When it deflates it can come out more easily. The button on the outside and the balloon just popped out of her belly.
So, thankfully, the this was the reason it came out. However, it was starting to ooze fluids and leak milk, so we were concerned and ended up getting an X-Ray. Everything turned out fine. 2.5 hrs later, we were back on our way to NOLA. (with sterile water and the right syringes to replace it, should the need arise)
Round about Baton Rouge, she started screaming, and screamed the entire way to The Ronald McDonald house. (Which we eventually found, having gotten lost in the big city cause we misplaced our directions and couldn't find them!) We had to check in by 8, and we barely made it, but we did!
Once we got there, we all 3 breathed a huge sigh of relief. Whew! We had made it.
The RMH was a very pleasant stay. The people there were extremely nice and it really was like a huge family. They welcomed us in with open arms. The had tons of food to eat, and lots of places to visit. They even can take you to and from the hospitals, walmart, target, walgreens, etc. It was a 3 floor house, in the middle of downtown New Orleans. And it did have southern flair. I did find that there is not really any privacy because you can't eat in your rooms and there are 2 tv rooms, but no tv in the room. So, really there was a bed and thats it. However, it was great getting to visit with other folks, going through some similar times.
The next day we were to go to her 2 appts. We tried and tried to get a GI appt but they wanted us to come back in 2 weeks. There was NO way. NO way, I said. We arrived at the hospital at 8. So we got to the geneticist, and that went fine. He even tried to get us an appt, but they were "booked". There, we met with the dietician, and got the approval to try anything to get her to eat. Anything that is fat free, that is. So onward we went to her hematology appt. This, too, went fine. But we did find out that she has chronic Anemia and will be on iron for a long time, till it can get better. It may be an off and on thing. She also tried to get us a GI appt, but still, no luck. So they suggested we go to the ER, and then they would HAVE to see us. haha. So, we did.
We went and got checked in at the ER. By this time, it was around 3:00. WE had been at the hospital ALL DAY. And I was tired, Annissa was tired, and Evie was tired. But we prevailed and insited on seeing GI. It was here that we met the best Dr, so far of all. He came in with his shirt half un-tucked, sweaty, fat, and bald, and dirty glasses. He was very arrogant. BUT, he did offer us a solution. Something no other Drs have done. Everyone, so far, has said, that it would "get better in time". See, Evangeline has really bad problems eating. She will hardly take anything by mouth, now that we have had the Nissen and G-TUbe done. She retches, and wants to vomit, but physically can't. She refuses most foods, and only takes her bottle maybe once a week. And its only an ounce or so.
This Dr put her on a medicine that is regected by mainstream medicine. But has said, with other patients he has had awesome results. So we are hoping for the best. However, if it doesn't work, then he wants to do another med, in addition to the new one. This one goes to different pain receptors. SO, the theory behind it: if you can get rid of the pain associated with eating, then you can gain her trust in food, and she will learn to like eating again. This is our hope. However, if neither of these meds work, then when she turns 2.5 years old, and is still having difficulty eating, then they offer an eating clinic. It is 15 weeks long, and in New Orleans, and they will re-teach her to eat. It is a slow, slow process. But I have some hope now. Its not indefinite. I have a time line to look forward to. Yesterday, I learned that my child will not be 7 and still only taking formula, whereas before, this was my belief. We finally found a Dr who believes, like we do, that she is in constant pain when she eats.
So we left the ER, at around 7:00 last night and didn't get home till 1:30. It was a very long day. A long trip. But well worth it. If nothing else, I learned to never stop searching for answers for her. If these methods don't work, then we will go somewhere else. Atlanta, maybe, St. Louis. I won't stop till she is eating "normally" and is healthy.
So, to sum up: it was long, it was very hard, but I am sooooo glad we went. And I thank the Lord that it was THAT Dr that came to the ER, and not someone else who would have brushed us off again. It was truly a miracle. Lets pray that something works!