Friday, April 15, 2011

11 Week Ultrasound

Just recently we went in for our 11 week ultrasound. I don't think Peanut was too happy that we were disturbing him/her and it took some "encouragement" to get him/her moving! Make sure you watch around the 6 min mark to really see some action in the womb :)

Thursday, April 14, 2011

Thankful Thursday - Birthdays & Movement

Know what time it is? It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. as I mentioned, I no longer have the "linky tools" but I invite you to share your thankful blog in the comments section. Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for time with family. After our trip to the CF Family Education day in Syracuse, NY, we were able to tack on a quick trip to Connecticut for my Great Aunt's 90th birthday. I was able to spend time with my parents (they flew in from China), Grandpa, Great Aunt, and a slew of family I haven't seen in 14 years - literally. It was so great to spend time with family and I was thrilled that my parents were there.

I'm thankful that yesterday's ultrasound went well. I'm 11 weeks and 2 days pregnant today, and I'm almost through the 1st trimester. I get so nervous before each ultrasound; scared I won't see a heartbeat. But I am so thankful that peanut's heart was beating, s/he was moving all over the place, and all is looking great. I feel so blessed to have gotten pregnant our first IVF cycle, but I feel even more blessed that God has continued the pregnant and kept peanut growing and healthy. I am so thankful for this little being growing in my belly.

I'm thankful for yogurt and frozen blueberries. I used to eat this combo all the time, and I haven't had it in awhile. Well yesterday I had the combo again, and oh my goodness did it taste yummy!! I am definitely having that combo daily. I am so thankful for yummy snacks/food. We are so blessed that we never have to stress about where our next meal is coming from (I can't imagine being pregnant in those circumstances). We are so fortunate to not only have food available to us, but to have yummy food that we eat just being we like the taste.

Ronnie's List:

I'm so thankful for peanut's progress. We just had another ultrasound yesterday and everything looks great. S/he got a little ornery and started kicking Mandi's uterus like crazy and as we say around here, any movement is good movement. We'll post the ultrasound video soon, but if you'd like a sneak peak, check out our Youtube account.

I'm very thankful that I got to spend some time with Mandi's family this past weekend. I was able to be part of her great aunt's 90th birthday party which was truly incredible. Some of her extended family were there also, so it was a joy meeting a bunch of aunts, uncles, cousins, 2nd cousins and so on. The birthday party was in Connecticut so I'm also thankful for the great weather in Phoenix.

I'm thankful that I got to meet some fellow CF community members in Syracuse last week. It's one thing to email and chat online, but it's a whole other thing to actually meet face-to-face. What else was cool was the fact that two of our community members introduced me before I spoke and what they had to say brought me to tears (I didn't actually cry, but I got choked up). They're the exact reason I get out of bed everyday and try to move the ball forward.

So, what are you thankful for today?

Tuesday, April 12, 2011

MRSA and Cystic Fibrosis

Here's another question from a reader that I thought most of you would find interesting. MRSA and other types of bugs are always a hot topic in our community so I figured it would be helpful to share this exchange. Remember when reading this that I am not a doctor (far from it) and I'm only sharing what has been told to me and what I've experienced.

I know from your blogs that you have MRSA. A dr just called and told me my son's last culture came back positive for it. :( What the hell does this mean for him? He was sick w/ a viral thing about a month ago and aftert a couple of weeks he was put on Sulfa and it seemed to work for a little bit but then his drainage turned back to green so our family dr (his cf dr was out that day) put him on Zithromax. That seemed to do the trick. Well, apparently, the fact that he didnt respond to the Sulfa made the cf doc suspicious and asked that we do a culture last Friday even tho we have a clinic tomorrow. He said we will treat him aggressively w/ antibiotics and hope that we can get rid of it? I thought once you have it you always have it? I am so confused...he also mentioned doing bleach baths?? WTH?? I thought it was transmitted thru blood but he said no mostly mucus, like snot? What do you think/know about this?? I dont even want to tell our family he tested positive (but I guess I have to to protect their kids from it?) b/c I dont want my son to be treated like he has the plague. Crap.

I'll try to answer your questions best I can and in order :)

We're not sure what it means. Some doctors will say that MRSA has no known long term effects on lung function while some believe that it can present a problem.

Treating aggressively is a good thing. Obviously not having it is better than having it.

The longer you have MRSA the less likely it is to go away. Treating early and often is key. You can get rid of it.

Never heard of bleach baths. When you find out what that is, let me know.

You may be thinking of MRSA/Staph found on the skin as far as the blood goes. This is different. It's actually found in many people's nostrils but because they have a normal mucociliary clearance system, it never gets to the lungs. It can be transmitted to other CFers via sneeze, cough, mucus, boogers etc.

You don't have to worry AT ALL about others in the family. I've talked at length with my doctors about this and the chance to "pass this on" at any level (to non-CFers) is very very little. I've asked about old people, babies, etc and they said not to worry. In theory, anything is possible. but getting others sick with our MRSA is very improbable. Think about it, Mandi would be sick! She's fine :)

Don't freak out mama. Encourage them to be aggressive and then hold on for the ride :)

I guess I better make my list of questions for his clinic tomorrow. Dr said that the bleach baths have be proven to help rid of the MRSA. I asked "why, is the bacteria on the skin?" and he said yes, it can be. Now, you say that is a different kind of MRSA? There are two kinds? He did mention it being a type of a staph. So maybe he doesnt have the same MRSA as you have? I know he didnt have it at his last clinic which was Feb 8, that culture came back negative for everything tested.

Weird thing to me is that he is fine right now, no symptoms of any sort. And his CF doc told me today that the zithromax wouldnt have gotten rid of the MRSA (obviously, seeing his tested positive after taking it) but my point being if he didnt have CF or it was one of my other kids, if they no longer had cold symptoms or any other symptoms I wouldnt think to have them be tested for anything else. And guessing neither would the dr. He mentioned that some carry the bacteria and are not symptomatic. Maybe he got it from one of us? I guess we'll all be getting tested for this:(

Oh Ronnie, do you cringe when you see you have mail from me??!! I am a treat aren't I?

There is stuff that they had me wash with when I first had MRSA, but I think it was only a nasal wash.

Generally speaking, if you hear about it on the skin, it's staph, not MRSA. We both have it in our lungs and it's the same bug. And it gets confusing, but MRSA is staph, but a staph that is resistant to the drug they usually use to treat staph. CFers can get both staph and MRSA in the lungs.

I don't feel any different since getting MRSA (2003) and my lung function hasn't declined because of it. I don't have increased exacerbations either. My doctors have never given my MRSA a second thought and don't seem to think it's a big deal.

You don't have to worry about having your family tested.

Keep the questions coming, that's why I'm here :)

But what if we carry it and we're the ones who gave it to him? Or would he have had to have gotten it from another CFer? Who knows, I suppose. I'll have to have the Dr clarify all this for me tomorrow. My son started on both the antibiotics they prescribed for him tonight already. Poor guy, one of them smells and probably tastes too, like cat urine. Dr warned me about that one. Real fun part is he has to have that one 3x's/day for 10 days. The other one, the yummy one, only 1x/day for 10 days. Nice.

So the MRSA you have doesnt cause the skin boils or anything? It's just a bacteria in your nose/snot? How did you find out you had it?

You can certainly try and take steps to prevent yourself from "passing it on" to your son, but I have a feeling that the doc will say that there isn't much you can do. It would be really hard to track down how the MRSA got to him and you'd probably drive yourself silly thinking of it. It's there now and all you can do is try to eradicate it the best that you can.

I've had the cat urine drug...wait until he starts marking the corner of your living room...just kidding.

MRSA will not cause skin boils. You have to think of our lungs and our skin as two different ecosystems if you will. MRSA in the lungs is a completely different ball game than MRSA/Staph on an open wound in your skin. I've asked the doctors before if I could cough on an open wound on my body and infect it with MRSA. Their answer: In theory it is possible, but very improbable.

I cultured MRSA after a routine sputum culture during one of my many hospitalizations. [END]

Hope you guys were able to get something from that! If you ever have any questions that come to mind, please don't ever hesitate to contact me by email or through CysticLife or Facebook.

Monday, April 11, 2011

Slacker Monday?

Please excuse the interruption to the regularly scheduled blogging. Today, instead of it being a legit Mandi Monday Blog, I give you a Slacker Mandi Monday Blog.

We had a great weekend in Syracuse, NY and we drove to Cromwell, CT to spend my great aunt's 90th birthday. We are spending today, Monday, with my parents (who also flew here to be here for the festivities), therefore, I spent yesterday and today NOT doing a real blog. However, we will fill you in on all the fun when we're home :)

Just a quick update, our little peanut is still doing well and we will get to see it on Wednesday during an ultrasound - needless to say, I can't wait. I want to see my little munchkin kicking and wiggling all over the place. Plus, I'm pretty sure it must really look like a human now. Still no real belly, but we'll post shots soon.

Sorry for being a slacker, but I assure you that I will not keep it up :)