Guessing Game

Another long one…

Well apparently the Nexium wasn’t going as well as we thought…at least we think it was the Nexium…at this point I am so confused!
Paula expressed her concerns to me last Monday about several changes she had noticed since he began the Nexium.
**Side-Note: this is one more reason why we are sooo blessed to have Paula in our son’s life…how many babysitters would pay such close attention to these little things!!??**
Anyway, we also had noticed some of them, but since I am only with him during the day on weekends, they didn’t add up with me as quickly. First, he had been fighting her when it was time to take his first bottle with her, which would be the 2nd meal after Nexium. It would be close to 2 hours later before he would finally eat. Second, he was more fussy and tired. He didn’t seem to want to play for as long, and just simply wasn’t himself. Next, he was gassier. HUGE big burps after he would finally eat that first bottle. He also began to spit-up more, unlike Mason. Plus, it was thick and had a mucus-like texture. Lastly, he was having way less dirty diapers. He normally had around 4, but dropped to 1 maybe 2 if lucky. And who knows, maybe that part is a good thing?? But, Matt and I had also noticed (and so did Paula, but she had chalked it up to him being older) that he was grunting again when he would go. He did this from newborn up until after we began his enzymes & Prevacid.

So, here we go again, calling the doctors. I finally got to speak to the Gastroenterologist (GI) doc whom we have not yet met due to his wife having a baby just as we began going to the Clinic. So far, just from speaking to him on the phone I think (hope) we are going to like him. He actually gave me REAL answers! I know it is unheard of for a doctor to give an answer that makes sense and that actually addresses the question asked! Dr. “B” explained many things that were never made clear to us…it had pretty much been “here take this, do this, because that’s what you do…”. Here are some things I learned in a 15 minute phone conversation:

1. The Proton Pump Inhibitors (PPIs) or acid blockers…Prevacid, Nexium, what have you…are important for many reasons. They are needed to reduce the acid levels in his stomach so the enzymes will be able to make there way into his digestion system before all the acid in his stomach breaks them up.
2. The acid blocker also is to prevent the enzymes from tearing up his stomach lining over time.
3. AND to prevent burning his esophagus caused from acid reflux, which is pretty common in CF patients. Even though an acid blocker won’t necessary decrease his spit-up, it should prevent any damage that reflux may cause. He said he doesn’t get too concerned when there is spit-up, only if Mason is irritable with it, which he had been lately at Paula’s.
4. Dr. B asked if we have ever tried giving his Prevacid or Nexium at a different time other than in the AM. NO, because I had been told it was best given in the AM so it would be with him throughout the day. Apparently this isn’t completely right. He said he has given this at any time and it should still do its job. But, I am going to clarify this again next time we speak b/c I have read that it is best given in AM b/c you don’t produce as much acid during those sleeping hours at night, thus defeating the purpose. Then again, I have also read of other CF patients taking it at night as well. *?*?*????!!!
5. He suggested switching the time we give him the Nexium to in the evening, to see if it is what really was causing him to be fussy.
6. Another option we have is trying Zegerid another acid blocker. He says you can take it with food, or at least wouldn’t have to be as strict, however when I picked up the prescription it says to take an hour before meal on an empty stomach. Go figure.
7. Apparently once food hits the tummy, the acid blockers aren’t as active, this is why they need to be taken on empty stomach and wait a while. But, he says Zegerid should work even with food…?? I don’t know anymore.
8. As far as the pooping issue goes (I know, where else do you get to read so much about poop than my blog LOL!?!) he hasn’t seen where Nexium effects BMs so he thinks he could be backed –up. Even though his stool isn’t hard when he goes and its still an OK amount, he thinks that if he is having trouble getting it out he may not be getting it ALL out, which apparently one should do every time you poop! Just a little fun fact for ya!
Went Friday AM as suggested by Dr. B to get an X-Ray to see if he was constipated….It’s Thursday, still no word. That really pisses me off! Talked to the nurse Friday regarding another issue, mentioned the x-ray to her & she says “call me Monday at lunch if you haven’t heard from me”. Monday, nada, Tuesday, nada, Wednesday – email from her saying she hasn’t forgotten about me, hopefully will have an answer today… nothing. EERRRRR!!!

Ok, that was your CF lesson for the day!

So, back to trial and error again…

We switched to Nexium at night = waking WAAYY more often, I’m talking every 1 to 3 hours. BUT, on the bright-side doing better during the day at school. After I had had my share of sleepless nights, switched back to Prevacid but at night = somewhat better at sleeping at night, good at school, still fighting that bottle that first bottle though. At this point I’m at a loss. We wanted to try all our options before trying Zegerid because it is twice as much as Nexium and almost 6 times as much as Prevacid! Prevacid is the only generic option…of course. So, Wednesday I went back to the Prevacid in the AM. He seemed to have no issues with it other than the occasional horrible vomiting episodes. I will just be EXTRA careful to not feed him any earlier than an hour before his meal.

Report from Paula on Wednesday is that he still doesn’t want that 1st bottle at his scheduled feeding (we try to keep him eating every 3 hours, other than at nighttime). So, instead of having him get so upset and stress herself out, she just waited until he said it was time to eat. It wasn’t until 1:30 that he finally happily ate his 11 AM bottle, but takes his late afternoon bottle as scheduled with no fight. Of course I have no idea what is going on with this boy! Starting to think he has his night and day eating scheduled flopped…how that happened, don’t ask me. Or maybe he is just getting older & changing things up on us?? Anyways, as long as he is happy, healthy, and growing like he should, I guess I should just leave it be and have him lead us. Because maybe one day we’ll look back on these days and laugh & say, that really wasn’t so bad…Mason was just having some fun playing with our heads!

GOOD NEWS: he pooped 5 times yesterday!! LOL! So, maybe if he was backed up it is all out now!

He is getting sooo sooo close to rolling over! He gets to his side and turns his head to where he’s looking behind him and just when you think he is there, he flops over to his back!

Got his pictures taken Saturday…OMG I just have to brag on how sweet and precious and cute my baby boy is haha!! He did get sick of taking his picture though…mainly b/c the lady wanted to put him on his tummy which he can only take for so long!
Hopefully will post the pics later!

Again sorry about the book…I rarely find the time to write and when I do I have so much I want to say!
Speaking of books though, I did find the time to sit down and finish one - “The Middle Place”. Jenn gave to me & it was sooo good! I am already on my next one “Heaven is for Real”. Which from everyone who has read it, including Matt, it is amazing as well.

I just really need to learn how to put all my worries in God’s hands…otherwise I may just go crazy one day.


Love –
Jess