Sunday, July 31, 2011
Thursday, July 28, 2011
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
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
Tuesday, July 12, 2011
Hello again!!
So, it is a lot harder than I thought keeping up with this thing…Angie you were right! Mason keeps me pretty busy & any “free time” I have is usually spent getting his stuff ready for the next day, EATING, showering, or just plain ole sitting on the couch…ya know things that normally didn’t seem so special BEFORE baby!! I’m sure many of you can relate!
We have switched antacids from Prevacid, which if you remember made Mason vomit every so often, to Nexium which has its own advantages & disadvantages. We had wanted to try Prilosec, but of course insurance doesn’t cover, and it costs over $100 without! Been using Nexium for 2 weeks now, and (knock on wood) so far no side-effects, other than it may be making him more gassy.
DISADVANTAGES: It is more expensive (no generic form). Still have to give an hour before, which means I usually have to wake him up in the mornings. Plus, it’s A LOT for a little baby! It comes in powder form which we mix w/ a tablespoon of water & then it thickens up to the consistency of applesauce. Since he is still either asleep or half-asleep when this is being squirted in his mouth he likes to let it run down his chin, or could be because he knows it frustrates me! Matt says that he just prefers it on his face than in his tummy!
ADVANTAGES: NO VOMITING!! He seems to like it which saves a lot of heart ache! We bought a “medicine bottle” (picture included) which works super when he is awake enough to suck on it (eliminates him spitting it back out) otherwise we revert back to the syringe.
Depending on his mood, it can take anywhere from
And speaking of being inconsistent, I couldn’t tell you from one day to the next how much that kid is going to eat. One day last week while home with Matt, he ate 15 ounces in 3 different feedings, when normally he had only been eating about 9 – 10 ounces. However, I do think he must have been going through a growth spurt…he was eating more often and fussy…especially the first day he had to stay home with Matt (Paula was on vacation). Matt ended up coming up to the office just to get a break & I ended up leaving work early to relieve him! The rest of the week went much better though, plus we had help from our niece Mickey! She came down to spend the week with us and was such a huge help with Mason & he adored her! This of course makes me think of all the wonderful help we’d be getting if we lived closer to familyL. We’d have a good handful or more of
I have to say (hope I’m not jinxing myself), that he is pretty good about going to bed about the same time every night…7:30 give or take 30 minutes. That’s mine & Matt’s time to relax.
Garrett and Dillon attended the Aggie Baseball camp this last weekend, so we also got to see the Pogue clan which is always a good time! Angie generously treated Mickey & I to a mani/pedi, it was MUCH needed!
We are learning that Mason is a social & happy baby…always cheesing it up at anyone & everyone…even people on TV. Yes, he loves TV! He smiles & talks to people on TV, pretty sure he believes they are talking to him! I love how happy he is and it melts my heart to see his big grin & to hear him babble! He laughs out loud now & it is the sweetest thing. I have found his tickle spot…he really gets going when I run my fingertips along the side of his tummy/ribs! I just wonder how long this “outgoing” personality will last…Matt & I can be pretty shy.
Yesterday was his 3 month CF Clinic appointment. I was bad & took the entire day off! Dropped Mason off at school & came back home to nap! But it felt so good…haven’t been able to sleep in or nap without Mason waking me up in 3 months…and it won’t be changing anytime soon. Technically still didn’t “sleep in”, had to get up with him to do all his treatments, feed him, & take him to school…but was still a nice nap! Picked him up about
The appointment went very well! I pray I will always be able to say that. Our goal was for him to weigh 13 lbs. 5 oz., a gain of about 1 ½ lbs. for the month. He weighed 13 lbs 2 oz. which the doctors were still pleased with. I didn’t catch his length...I’ll try to find out. We saw totally different people this time around. I think they like to rotate seeing patients each month. This time we met the “Child Life Specialist”, whose job it is to talk with the kids about the medicines they have to take or treatments, but Mason didn’t offer much more than smiles! She was really nice, I think we will like working with her later on. Also met the social worker, I think her job is to help with any financial situations and insurance issues, but she didn’t really offer much of explanation...she mainly just ooogled over Mason.
The pulmonologist doctor was new as well. He was a very nice Argentinean, which made it hard to understand him, but overall I liked him. We had been trying to get someone to give us a straight answer as to what a “mild” case of CF looks like (we read all about how horrible the severe cases are) and I guess they don’t want us to get too much ahead of ourselves, but we’d just like to know as much as we can, plus it gives us some light out of all the gloom that is CF. We had been told and read about people who go a really long time before even being diagnosed, how they present very minor symptoms of CF, but he added a bit more to what a “mild” case could be. Basically he said mild CF looks like a relatively healthy person. What is hoped by diagnosing CF as a newborn is that we can keep him nutritionally healthy. That his body & mind grow. He commented how if he didn’t know Mason had CF, he looks like any normal healthy baby…comments that we get often.
Mason enjoyed being the center of attention…smiling at all the doctors even if they weren’t talking directly to him!
Finally, talked Matt into taking Mason to get his 3 month portraits done! His excuse: “We have a camera…” We go in a couple weeks, can’t wait!
Ok, I’m going to attempt to post more often, that way at least you won’t be reading for an hour!
Enjoy the pictures!
Taking his Nexium in his "medicine bottle"
Cousin Mickey
Visiting Daddy at work!
3 Months Old!
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