Upper GI

So, Harlie's Upper GI went well I suppose. She was scared but still cooperative.

They put some barium solution into her feeding tube while she stayed under the x-ray machine. There is a monitor that the doctor watches to know when to take the x-rays. Since Harlie was being so good and cooperative, I was able to stand on the side of the monitor more than I have in the past. Usually I have to stand behind the monitor so she can see me. Anyway, the doctor was great at pointing out what was what and what was going on. She's also the same doc we had in January for her last upper GI.



She stayed perfectly still for the baseline x-rays, before we actually started the Upper GI.





Anyway, for the first time ever (on a study, I mean), we actually got proof that she is refluxing. I mean, we already know that by the fact that she vomits, duh. But, every single time she's had some sort of study, she never refluxed during the study.

Her nissen is still intact, and the doctor said it looked pretty tight. But, some barium still made it's way past it and into her esophagus (but she didn't vomit). I think she got some good pictures of it for her surgeon to see.

Here's the issue: does it warrant having another surgery to make the wrap tighter? If it were up to me - and she didn't need to have another jaw reconstruction - I would say no. I can easily live with the amount of vomiting she does right now. A few times per day sure beats the 40 times a day she used to vomit. So, I'm happy.

Tightening it has some drawbacks (if it's even an option). If you make the wrap too tight, swallowing becomes difficult, if not impossible. And with all the progress she's made lately on that front, we don't want that to happen!

But, it's going to be up to her plastic surgeon. If she has the same surgery she had before, then her jaw will be wired shut for nine weeks and it will be safety issue (aspiration). The surgeon that did her last surgery would not even consider surgery unless she had a nissen. We meet with a new surgeon September 14th for a second opinion. And then after that, we'll have to make some decisions. As usual, fixing one problem, causes problems in another area.

I suppose it's possible to do the wrap tighter (surgery), have jaw reconstruction, wait nine weeks, remove the wires, then undo the tightness of the wrap (surgery). Because while her jaw is wired shut, she can't eat by mouth anyway, so swallowing won't necessarily be that big of a deal (other than her own secretions). But that sounds like a lot to put her through. But, she needs this jaw surgery to move forward. We can't put that off much longer. So, I don't know what we're going to do. I guess we'll just have to wait and see what the doctors say. I'm sure she'll go back on Prevacid. In fact, I went on ahead and did that today.

For the most part, I feel like I'm pretty patient with Harlie's stuff. But, the thought of waiting six more weeks to start the ball rolling on any front regarding her jaw is killing me. If we meet with this new guy and like him and his treatment plan for Harlie's situation - who knows how long it is to get on his surgery schedule. If we decide to stick with her original surgeon, then we'll still have to fix her vomiting - before he'll do it and then who knows when we'll get on his surgery schedule. The same might apply no matter who we go with. And we have to hurry up so she can get her spinal surgery. I have a feeling her jaw might just have to wait. Which also kills me. Ahhhhhhhh!!!!!

Upper GI today

Harlie has an upper GI this morning. Trying to figure out what's causing her vomiting (even though she has a nissen). This is probably her third upper GI. I'm not holding my breath for any answers. Really, it's just to rule some things out.

Gotta go!
Christy

Feeling crappy

It's probably no secret that I'm down in the dumps. I can usually pull myself out pretty quickly. But I'm having a harder go of it this time. Sometimes I just wonder if I will have the energy that this coming year will most likely require. For the most part I only look so far ahead - looking too far makes everything too overwhelming. But, trying to figure out which surgery will happen first (when I thought her heart surgery would surely be) is getting me down. Now I have to meet with her plastic surgeon and a new ortho doc in DC to try to get a handle on what needs to happen and when. Then I'll report back to her cardiologist in DC to try and figure out how it's all going to play out. I am very surprised how unsettled I feel about it all. This is when I wish I had someone (like, say, a medical professional?) to help me coordinate and figure all this stuff out. But there isn't such a person. The reality is that there isn't ONE doctor that knows as much about all of her specialty issues as me. Great. More fun for me!

Anyway, Harlie had an upper GI last week to check on her nissen fundoplication. It was awful. Not that it was "painful" for Harlie, but we had to hold her down under the x-ray machine and she hated that. Especially considering she had just gotten her ear tube the day before! They put some barium in her g-tube and then took x-rays to see what happened once it went in. The reason she had it is because she was back to vomiting every day again. They just wanted to see if it was still intact and that it was where it was supposed to be. The radiologist said that all was fine. Didn't know how or why she would be vomiting every day again. Oh well.

HOWEVER, I don't know if you remember, but I've been working towards getting her on a blenderized diet. I've heard so many good things about it and I really wanted to get her on it before we did the nissen (as I've heard that vomiting commonly stops when the child is on it) but there just wasn't time. Anyway, Harlie is now up to getting 3 ounces of applesauce and 3 ounces of green beans, plus 4 cans of formula (which makes a day's supply). And she hasn't vomited in a week! Well, that's not completely true - she vomits if she gags during feeding therapy or if her trach really needs to be suctioned, but those times don't count, if you ask me. So, I'm hopeful that this blenderized diet has some great benefits.

PLUS, we stumbled along another great accomplishment this week... On Monday her feed pump broke. So, called the people about it and they said it would take a while to get someone out. Bummer because that meant we had to feed her manually. So, I broke down her rate into 3 "bolus" feeds over 30 minutes. Her feed rate was 200 mls at a rate of 400 mls per hour. So, it took 30 minutes for her to be fed. Well, the 3 bolus feeds went great. So, after a while, we tried to do it in 2 bolus feeds. That worked great, too! And she wasn't in the least bit bothered by the change. No vomiting, no uncomfortableness! Now, today -she was fed in 1 bolus feed for all her feeds - and she did GREAT! YAY! No more food pump! No more depending on a piece of machinery to feed my child. I just need the right tubing and a syringe and we're good to go! It feels like a little bit more freedom. So, that's all quite exciting.

Last Thursday Harlie got her monthly RSV shot. That's never fun. And while there, Cooper got his well check and some shots, too. At 3.5 months old he weighed 14 pounds, 12 ounces. That puts him in the 50-75th percentile. None of my kids have ever been that high on the chart. I can't help but go and look at how that compares to Harlie. She was 11 months old before she weighed that much. And at his age she weighed just 8 pounds, 1 ounce - not even his birth weight! Crazy.

Well, that's all I have time for tonight.

Take care,
Christy