Well it's been a wild ride!

Not sure where to start. Last time I posted she had her tonsils out. Recovery went well and quickly and she had no complications. However, it did not improve her eating. In fact, I think it's worse

Her biopsies came back negative for anything from her last scope in September

However, things went downhill quickly after her tonsils were out. She began vomiting and gagging. They started her on reflux medications since she was complaining of chest pain. It didn't do anything. The vomiting got worse. She started vomiting almost every feeding. She wasn't tolerating anything and was losing weight. We were very worried and had a few nights of tears worrying about her. We were getting maybe 8 oz in a day (she needs close to 40).

The doc had us start pedialyte and watered down lower calorie formula and a few weeks of that seemed to do the trick. We haven't gotten her back to full feedings yet but she's back on the higher calorie formula which is a plus! She still doesn't tolerate a lot of feedings but we do what we can. We just want her weight up!

Two weeks ago she went for a upper GI xray to evaluate her stomach for the vomiting. They saw delayed emptying of her stomach so they scheduled a gastric emptying scan (which i've been asking for for 2 years!)

She was SUCH a trooper. This child laid still for TWO hours for that scan. I've never been so humbled by such a little girl. She never once complained. I'm so proud of her and love her to pieces. She never ceases to amaze me! After that scan we went to see the GI doc.

He said he didn't have the official reading of the scan but what he did see he wasn't happy with. He asked me if I knew he was always honest and frank with me. I said yes. That statement scared me. He told me her results were bad. He was not happy and very worried. He said it was one of the worst scans he's ever seen. Her stomach didn't empty. At all. The whole two hours. He decided to start her on two more medications (in addition to all the others!).

He then stated this usually gets worse. They said most people have a tube inserted in their intestines to bypass their stomach. Eventually that fails to work and the person goes on IV nutrition. That is a last resort. He said if it gets bad enough, people do die from this. Usually from infection, intestinal blockage, kidney or liver failure, or electrolye imbalances. He said it would take many years for this to get worse, so we are thankful for that! But he wasn't optimistic she'd get a whole lot better and seemed to think it would get worse over time

They then drew blood which is never a fun thing. They are running roughly 20 different blood tests and 4 different stool tests to try to find a cause. But the doc said in most cases no cause is ever found. It's just the way the person is

So I tried to fill her prescription but Walgreens claimed it didn't exist. They couldn't get it. After sitting in the pharmacy at 10pm for almost an hour listening to them claim a common antibiotic didn't exist. I came home and threw a little temper tantrum. I'll admit it. I was sick of it. We don't need one more thing on our plate. We don't need more stress! Trying to wrangle up this prescription every month is not what we needed! As I sat there at Walgreens waiting I saw person after person walk in with their designer purses and shoes and yaking on their expensive cell phones. I watched as those people paid 1.00 for their prescriptions. That did it. As we sat and struggle to pay for more and more formula. More and more medical costs. More and more prescriptions, there people sat paying a buck for their prescription and got 100% free healthcare. I was beyond mad. I came home and lost it and started bawling to Patrick. It was selfish of me and not one of my finer moments. But I was just done. I was frustrated. I was overwhelmed. Patrick talked me down like he usually does

Thankfully a dear friend, Rachael, whose mom works at a pharmacy in Grafton was able to help me. I contacted her and she was able to get the prescription filled. My mom was nice enough to pick it up every month for us and I can get it from my dad who works near me. I am so grateful to Gigi! One less weight lifted off me

However after all that hoopla, the doc called me. He finally got the results of the emptying scan. He said in normal people, half their stomach should empty in 60 minutes. Per calculations (since her stomach didn't empty at all there) it took 762 minutes to empty half (3 ounces). That's over 12 hours to digest 3 ounces of formula. Over 24 hours to digest all 6. No wonder she feels like crap!

It's not a good result. We are happy for answers but not pleased with the results. He said he didn't even want to try the medication we just frantically tried to get. He wanted to try another one called Reglan first for 4 weeks. If that didn't work, she would have whats called a J tube inserted. It would feed her directly into her intestines bypassing her stomach completely. He said he didn't want to monkey around and wait and just get it done

However, Reglan has horrible side effects and terrifies me. It can cause long term damage. I personally had a horrible reaction to it and I'm scared to give it to her. So I'm going behind their back and doing the original medication even though they said it won't work. We are gonna try it. If it doesn't work, then we will try the Reglan.

However it is inevitable she will get this other feeding tube and we are fine with that. The only issue is you can't do a bolus with it. Right now Evelyn gets 4 "meals" a day of 8 ounces each. The small intestine can't handle that so she has to be on a continuous drip. If she can't get her nutrition in all night, she will have to be fed daytime. And since she goes to a private school, they legally are not obliged to help in any way. We are terrified she won't be able to go to her school anymore. She is thriving there. She loves it and is doing so well and just prospering there. It's the best thing we ever did. I dread changing it and sending her to a school we know she hates. She goes to our local public school every week for therapy and cries every time. It's too big and there are too many people. And the religious aspect of her education is so important to us. But if she has to be fed daytime, they may not allow her to go there. That just breaks our heart. Especially if the other kids get to go there. Only time will tell. THey are willing to give her medication and we are so thankful for that!

The hardest news was that they are stopping feeding therapy. The goal was to tube feed her a few years, get her growing and wean her off the tube. The goal was always improve her eating. They said it's no longer their goal. She'll most likely be tube fed for life. That was beyond hard to accept. I don't want that for her. I want her to have a normal childhood. A normal adolescence. A normal adulthood. I get so sad thinking of her when she gets to dating age and is trying to date with a feeding tube :( I know it happens all the time, but I'm sad she has to go through that. Because people see the tube. And not her. I hope she can get married, go to college, have babies. Do all those things people are meant to do. I love her more than anything and I'm so sad for her. But I know she knows no different and that helps. This is her life. It's normal. She doesn't complain. She accepts it. She's such a trooper!

So that's us. We'll try meds for 4 weeks but most likely she'll get a new tube come January. Hopefully that will help us for the better!

So that's that!