I hate it when I go to Birmingham when it’s raining. The only other trip it was raining was that first trip down. On that time we found out about all the tests that we would be doing. And what was in store for our little one. All subsequent trips weren’t the easiest in the world but the sun was shining which made it a little easier. Tuesday though was awful. There were tornado warnings and flood warnings, I just knew this wasn’t going to be a good day.
After my surgery on October 17th Rayne started to get sick. Not too bad at first but it slowly go worse. There was a lot of vomiting, crying and doctors involved in the process. It was a virus that reeked havoc on our little girl and left her with a paralyzed stomach. Paralyzed stomach is often temporary after a virus and just means that the body says “I’m taking a break. Don’t bug me” So Rayne was on a liquid diet for just about a week and then she started to eat. And I mean eat! She would eat almost as much as I would at a meal. Almost a week this lasted and Rayne put on two pounds. Then she stopped.
Honestly we expected it to happen eventually. It was just so much food we thought that maybe she was just trying to catch up. But she started to get really fussy and acting like her reflux was bothering her. Rayne didn’t want to lay down, she would arch her back pick at and pat her chest all day. The oddest quirk was that when I would snap up her sleepers at the top most snap she would fuss. We made sure that all doses of meds were given on time everyday (Prilosec twice a day, Axid three times a day, Pepicd once a day). We even through in some extra doses of Carafate which coats everything and is more about comfort than suppression. This didn’t help. I called the nurse at the Gastrointestinal doctor and she said to try giving the Carafate an hour after her other meds. It could be coating enough that her meds aren’t absorbing. We gave it a week. We were a little better but if a dose of anything was missed heaven help us all. There was no way around it Rayne needed to see the doctor.
Tuesday it rained, and rained, and rained. Our appointment wasn’t until 4 so I closely watched the weather reports and decided to pack enough things for us to stay overnight. Besides the weather I didn’t know what the doctor was going to do. If we needed to stay to run a test I wanted to be ready. It’s a 90min drive each way I didn’t want to have to come back for a test if I didn’t have to. The whole drive I just knew something drastic was going to happen that day and as I started to pass car accidents requiring tow trucks and ambulances I started praying really hard that an accident wasn’t it. We made it to the doctors safe and sound though.
Rayne weighed in at 18 pounds 2 ounces 28.5 inches long! Later I found out she made that chart with that, 1%. WAHOO!! Once the Doctor King got into the room I could tell he knew what his next move was. Sometimes I hate that feeling, because well it’s not always an easy thing the doctor is about tell you to do. Then came the words, “I think it’s time for a Fundoplication.” I had heard this word before and I knew it was a surgical procedure where part of the stomach was wrapped around the esophagus to help the sphincter close properly.
The reason we have to do surgery is that there is no other medical option. Rayne is maxed out on all of her meds. With this much medication she shouldn’t need the Carafate five times a day, a month ago we didn’t have to. Something has changed, what no one knows, but medicine isn’t going to cut it anymore. There is no point to Rayne suffering until she ‘grows out of it’ because that often takes years. Anywhere from 3-6 years. Not only is that hard on baby but mommy and daddy. Giving meds 8 times a day doesn’t get any easier as a child gets bigger. Also Rayne is still classified as failure to thrive. Which is not uncommon for kids with sever reflux because the meds can block nutrient absorption and they don’t want to eat much because it hurts. So it made sense.
Then Doctor King said, “That’s not the bad news. The bad news is you have to do one last test before the surgeon I want to do it will. It is called a pH probe.” He then went on to explain that I would take Rayne to the hospital have her admitted and she would have a probe fed down her nose through the esophagus and it will sit right at the top of the stomach. The probe stays in for 23 hours. It measures exactly how much, how often and how long acid gets out of her stomach. This is for a definitive diagnosis and the surgeon wants it because he’s not one to cut someone open just for the heck of it. And as I’ve read about it, this test can also help with some of the decisions the surgeon has to make. It’s no fun to have something down your nose and to make it even more awful Rayne has to be off her suppression meds for FIVE days before the procedure. Thankfully we can still use the Carafate every four hours but still, it’s going to be a long week. We are trying to get the test set up to happen in Huntsville because it would be so much easier on us, but we will see.
After the pH probe it will take a few days for the information to be complied and then we will make an appointment with the surgeon and set up the surgery. The surgery itself is an hour or less but will require a two to three day stay in the Children’s Hospital in Birmingham. They have to watch for complications and in infants it is not uncommon to put in some kind of feeding tube, since they have no desire to eat. But we will get more information about that when we meet with the surgeon.
Right now we are in a holding pattern because of the holidays. Most offices were closed so nothing has been scheduled and we have no idea how quickly this will happen. It could be all be said and done by Christmas or surgery may not happen until January or February for all we know.
So for now Rayne isn’t eating a lot. What she eats she keeps down; thankfully she was never one to spit up because of reflux. Only when she’s sick do we have problems with things coming up. And the doctor told us to give her whatever she wants to eat. If she wants all pasta let her have it. It’s an acid absorber, but more importantly it will keep her happy. Fruits and vegetables can be hard to digest so if she doesn’t want them don’t force it. Just keep her from losing weight and hydrated. Also if she wants to sleep sitting up or on top of us, just do whatever we feel is right and keep her as comfortable as possible.
You can also check out these link for more informationhttp://www.youtube.com/watch?v=J8ATpSWQrIE
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