Why Do You Go Into The Hospital For So Long??

I've been meaning to write a blog about this because it's a question I get often and I just so happened to answer it this weekend, so I thought I would share.

I have a question? Why do you always do such long hospital stays? If it helps you great, I was just always told that after ten days if antibiotics don't work, they aren't going to, they always kept me 14 days so that the drugs would be in my system a bit longer, but after 2 weeks if I wasnt better they would start me on new Meds or add to the brew. So I was just wondering?

I guess the short answer to your question is that I come into the hospital for more reasons than just IV antibiotics - focused care, hand pounds, rest, etc. If I thought IV antibiotics (and IV antibiotics alone) did the trick, I would just do them at home. For me, I've improved in here after 5 days at times and after 25 days at other times.

Like most things, I just think it's important to figure out what works for us, truly works best for us, and go with that. It takes a lot of trial and error, but eventually we can get it figured out.

And about the 10 day antibiotic thing... that is still disputed in the medical community and I've been told off the record that some doctors use it as a tool to just get us out of the hospital. Many people don't think about this, but hospitals start to lose money on CF patients after a certain amount of days. Could pressure from the hospital or from the insurance company play a role? I of course don't know, but when it comes to money, nothing is out of the question.

Also, how antibiotics actually work in the lungs of a CF patient is not only not clear but hardly an exact science. A study just came out stating that there was no difference in clinical outcomes when it came to selecting drugs based on a sensitivity study and just cycling the most common antibiotics. It is my belief (as well as the belief of many others) that antibiotics are still one of the most misunderstood parts of our care.

The only way to truly know if the antibiotics were taking are working, is to focus on the quality of life and the improvement we see in how we feel. It's also important to remember that there is also a victory in not getting worse. My numbers often don't change for the better while I'm in the Hole, as my exercise is greatly reduced and I don't do well lung wise laying around all day. My number 1 goal for coming to the hospital is to get me back to a place that I can leave here and confidently say, "I'm ready to kick some major booty!"

Hope that answers your question, it was a good one!

**It's also important to note that I have in fact tried at home IV's more than a couple times and I neither felt better, nor saw an increase in lung function, any of those times. That doesn't mean that I won't try again, but it does mean that I am skeptical. Things can change however, and I'll never pigeon hole something forever :)

Update from the Hole: Day 17

Thankful Thursday - Thunderstorms & Wiggle Worm

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. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful that Ronnie's starting to feel a little better. He's not feeling 100% up to par, but any improvement is fine by me. We always know that the hospital is just the launching pad for getting PFTs up and getting back up to snuff. So I am so thankful that we have this launching pad and I'm thankful that we can work hard, together, to get his PFTs soaring in the near future.

I'm thankful for my little wiggle worm. As a paranoid first time mom, I often worry at the slightest change in feeling, movement, you name it. But the one thing that always reassures me that Peanut is healthy and happy is when she moves around. And let me tell you, this little love is a serious wiggle worm. This afternoon, after being moderately active all morning, peanut moved constantly for about 2 hours. She would stop for 1-2 minute stretches and then would be at it again. I absolutely love when she's moving because it reassures a worry wart like that she is doing well.

I'm thankful for thunderstorms. In Arizona, we don't get a ton of good thunderstorms. But I LOOOOOOVE thunderstorms. Something about the sound of rain on the windows, the booming of the thunder, the flashes of lightning is just so relaxing and beautiful to me. The last couple of weeks we've had quite a few thunderstorms, and man, I love it!! Not to mention I'm thankful that it's cooled it off around here - so the heat of the summer has subsided a bit and it feels great!

Ronnie's List:

I'm thankful for the exercise bike in my hospital room. Since I'm still not able to run with any sort of consistency, it's nice to have an option of a workout here in the Hole. Mandi and I still take walks everyday, but the bike gives me the opportunity to really get my heart pumping. In fact, I started to "back-flush" a little bit of blood into my PICC line the other day while biking because my heart was beating so fast!

I'm thankful for thai food. We had a little treat last night for dinner when my mom brought some thai food up courtesy of my grandma (thanks g'ma!!). Mandi and I love thai and we especially love a little hole-in-the-wall place that is very close to the hospital. I'll admit that I overate just a little bit, but I did resist more than I usually do.

I'm thankful for rain. It's been storming here in Tucson for the past couple of days and it's been absolutely great. I can hear the thunder crashing outside of my window and it's really cooled things off for the afternoon walks! Now, I'm glad that it's mostly sunny here in ol' good AZ, but having a little bit of rain is a nice treat once in a while.

So, what are you thankful for today?

Update from the Hole: Day 15

Update from the Hole: Day 14

Vacationing at Club Med...icine

As many of you have read in past posts, I happen to enjoy hospital stays (to a point...after a few weeks I can get a bit stir crazy). There are so many things we enjoy in the hospital together that I look forward to this time together. After being back home Thursday-Saturday (had an OB appointment and some work stuff), I was looking forward to getting back to the hospital to spend a lazy day with my hubby yesterday...and I was not disappointed. Yesterday was the type of "hospital day" I look forward to.

I started the day with a run/walk, which felt glorious because it was "chilly" out (about 75). When I got back from my workout, Ronnie had just finished his vest treatment and we were ready to eat. There is only one desired option for weekend morning breakfasts in the hospital, and that is none other than DUNKIN! So I headed to DDs to get breakfast sandwiches and coffee. We then downed our sandwiches while enjoying our favorite radio segments from Johnjay and Rich - War of the Roses and Second Date Update (google them...they're epic). We then proceeded to sit around ALL morning and afternoon and listened through a huge chunk of archived War of the Roses and Second Date segments. It was incredible. There's nothing like laying around all day listening to mindless radio segments while snuggled up with your hubby. We laughed at all the funny callers and jokes of the DJs, we shared stories and "what would you do ifs" as we put ourselves in their shoes...oh and of course we enjoyed some Crunch Berries as our "popcorn" for the show. We just laid around, laid around, and oh yeah, laid around some more. We did rest our ears for a bit while Ronnie did his 11 AM and 3 PM treatments - he played video games and I napped. We snuck in a quick walk in the afternoon, but that was the extent of our physical exertion for the day, and it was amazing!! After hours of laying around and snuggling, Ronnie's mom and brother brought us a yummy soup for dinner and we topped off the night with my new favorite hospital tradition: fresh baked cookies from the cafeteria!

It was the most amazing day after. There is nothing better than having the excuse to lay around and enjoy my hubby's company. As I laid there this afternoon something really hit me though. I realized that days like these are likely coming to an end. Hospital stays will now become a time of increased responsibility for me verses a "vacation" from our reality. I found myself a little sad at the thought, but that sadness was quickly replaced with excitement. I couldn't help but wonder, "what new hospital traditions will we come up with for Peanut to enjoy?" I got excited about Peanut and I bringing daddy Dunkin together. I visualized Peanut going for IV pole rides. I thought about the fun Disney movies we'll watch together, the 3 of us snuggled in the tiny bed together. I cannot believe that this is our last hospital vacation just the two of us, and while that's a bit sad and scary, I find myself SO eager to see how the next hospital stay looks like with the 3 of us!!!! Let the new traditions begin!

Hospital Room Virtual Tour

Thankful Thursday - Freshly Baked Cookies & PFTs

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. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful that Peanut's staying put for at least another 2 weeks (and probably another 8)! I was, obviously, worried when I found out I was having contractions 2 minutes apart, 1cm dilated and 50% effaced. However, I am so thankful that the test showed that there is a 99% chance that Peanut won't be here for at least another 2 weeks. I am so thankful that it was a bit of a false alarm and that Peanut will be holding tight and continuing to bake.

I'm thankful for the 32 weeks I had of exercise! I have cut out any and all exercise the past couple days until I can see what my OB GYN says regarding my activity level from here on out (I have an appointment on Friday). Man, do I miss it. I didn't realize how much I loved being able to exercise until I couldn't do it for a few days. Sure it's tiring, but man I love being able to feel human and normal as I walked, ran, biked, lifted, you name it! Hopefully the doc will let me continue to work out a bit, but if not, I am thankful for 32 weeks of activity.

I'm thankful for freshly baked cookies. The hospital cafeteria now has freshly baked cookies that come out every night at 9PM. Holy cow are they good!! This pregnant momma can't resist an ooey, gooey, hot and tasty chocolate chip cookie. I could eat 300 of them, but limit it to one (GIANT) cookie a night.

Ronnie's List:

I'm thankful for my latest PFTs...again. I took my first lung function test since being in the Hole and I was rather pleased with the result. They were actually down from the week before at clinic (only 2%), but I was actually expecting worse. I felt really tight the day I did them and I generally get worse before I get better in here. I'm just so thankful that I was still able to blow a 67%!

I'm thankful for fresh baked goods in the cafeteria. Recently, the cafeteria here at the hospital has been serving fresh baked cookies starting at 9pm every single night. It's not only nice because it's quite the tasty treat, but it's also nice because it reminds me of home a bit. Mandi is quite the baker, so I've been spoiled with freshly baked cookies and muffins many times while we've been married. Anytime you can get a little "taste of home" in the Hole, it's a good thing!

I'm thankful for John Jay and Rich and their morning show. One of our hospital traditions is to hang out on weekend mornings with our Dunkin' Donuts while listening to John Jay and Rich. We listen to it online and really only listen to two specific segments called "War of the Roses" and "Second Date Update". I won't get into the premise of these segments, but if you want to get a laugh and be shocked all at the same time I suggest going to www.johnjayandrich.com and then hover over "On The Show" and the segments will show up. Prepare to have a good time.

So, what are you thankful for today?

Update from the Hole: Day 7

Peanut Took Labor Day Seriously!!

Thankful Thursday on Friday - PFTs & Wifey

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. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for Ronnie's last PFTs. We may be in for a tune-up right now, but I couldn't be more thrilled with Ronnie's PFTs before he came in. An FEV1 of 69% when he's not feeling great is fantastic in my book, especially when he got out of the hospital last time at 61%. I'm just so thankful that the extra working out and eating well is paying off!! I couldn't be more thankful for how hard he works and the results we're seeing.

I'm thankful for tune-ups. Man am I SO thankful for the privilege for Ronnie to go into the hospital, have meds and get feeling better. What a huge blessing that there are IV antibiotics that work and an opportunity for improvement. I'm also thankful for a little quality tune-up time together - nothing like bunking up like it's camp, vegging out and enjoying each other's company in a different setting.

I'm thankful for freshly baked chocolate chip cookies. I made a dangerous discovery last night...around 9pm they bring out HOT, freshly baked cookies in the cafeteria. We're talking while I was standing there they brought out the cookie sheet and it was hard to get it off the sheet onto a plate it was still so gooey. Oh.my.goodness...there is nothing more yummy!!

Ronnie's List:

I'm thankful for my latest PFTs. Short story - last time I got out of the Hole I was blowing an FEV1 of 61%. About one month later I was blowing about a 72%. My last PFT showed me blowing a 69%. I just feel so blessed that 5 1/2 months after my last hospital stay that my lung function has actually improved.

I'm thankful for understanding and trusting doctors. After what I said above, many of you are probably thinking the same thing - why in the heck is he in the Hole?? I'm here because I need to be here and my doctors trust me when I say that something is going on and we need to nip it in the bud. I've had a slow decline these last couple of weeks and I didn't see that improving without the intervention of some hospital time. I know that some of us out there have to fight to get into the Hole - I'm fortunate that with a little bit of trust and open communication, I have a team that has my back (I'm still seeing my old team in clinic and they make the decisions as to whether I go in or not).

I'm thankful for an understanding wife. Hospital stays are not as awesome as being at home. Running around the hospital grounds is not as cool as running around the neighborhood. Working out at the hospital gym is not as fancy as Fitness Works. Hospital food doesn't even come close to as tasty as the food we prepare at home. Sleep in the Hole is disrupted 10 fold when compared to sleep at home. Yet my wife, she doesn't complain. She just "sucks it up" and makes due. I think in part, it's because she knows how important hospital stays are, but that wouldn't necessarily mean that she would have to have a great attitude about it all. Yet she does, and she makes due with what has been given to us. I love her.

So, what are you thankful for today?

Update from the Hole: Day 2

Update from the Hole: Day 1

The Non-Hospital Update!!

Nesting: Playroom Addition

As of tomorrow (Tuesday) we will be 31 weeks pregnant - WAHOO! Somehow 31 weeks sounds WAY further along than 29 or even 30 weeks (silly how your brain can work that way sometimes...who knows why that sounds so much further along). So the clock feels like it's really tickin' fast now. Therefore, we decided this weekend was a good weekend to get crackin' on the playroom. Our house's common areas (family room, dining room, kitchen) aren't great places to play, so we are making the bedroom next to Peanut's nursery (connected by a jack and jill bathroom) a playroom. The plan is to have all of Peanut's toys live in there, and much of the play happen in there, but obviously everything will make its way out into the rest of the house a ton, but at least the toys will have somewhere to "live". We went on Friday and purchased a sleeper sofa (figured it could double as another guest room if we ever needed the space). Then on Saturday and yesterday, we ran all over the place shopping for additional furniture and storage for toys. In shopping for furniture, storage, and decorative stuff, we stumbled upon a ton of reasonably priced puzzles, books and toys at Tuesday Morning (I've never been - WAY cool store).

So 1 couch, 2 pillows, 1 throw, 1 "rocking cow", 2 shelves, 12 nylon storage boxes, 38 books, 4 puzzles, 3 toys, and 2 stuffed animals later, the playroom is getting close to being ready for Peanut. We didn't get many toys or "baby things" (like jumpers, bouncey seat, swing, etc) because we're registered for all of that, so it will come with time (after the shower).

Anywhoo, check out what we have so far:

Couch - moreso for mom and dad than Peanut - and a fun "rocking cow" that sings songs.

Storage on one side of the closet. No toys in there...yet!

Storage on the other side of the closet.

The small storage shelves are already filled with books and puzzles from this weekend! We got a little carried away!!

So there you have it! That's Peanut's playroom thus far. It's mainly just the bones. Can't wait to get a rug, stuff for the walls, and all the fun baby stuff like a jumper, playmat, bouncey seat, you name it!!

Images of Our Little Peanut

We went in for a 3d/4d ultrasound yesterday. Here's some stills that we received. You can see her yawning, crying, pointing and even in the last pic, praying!!

We get to "see" Peanut today!!

Just random little tidbits about my Peanut...

Today we are heading back to the 3d/4d ultrasound place to get another scan done. We really enjoyed the first one, and although it's not covered by insurance, we think it is worth every penny. They're all about getting good shots of your baby and providing as many pictures as possible. We also opted to get a DVD of the entire ultrasound and I'm sure that we will be doing that again. Be sure to tune into the blog this weekend or Monday as I'm sure we will be posting some pics!!

Another thing I thought I would mention (only because it's so crazy to me), is that now Peanut is getting to the point that we can feel individual body parts. There are times that I could swear me and Peanut are shaking hands! Just before I started writing this blog, I'm pretty sure that I was able to identify almost every one of her body parts. I also got as close to holding her as one could possibly get at this point as I had her head in my right hand and her butt in my left. It's so freaking cool!!

We've also started to read to Peanut per the suggestion of a librarian here in Chandler. Granted, she was talking about after they are born, but we figured it's never too soon. Peanut usually becomes very active when we read to her and I'm of course "sure" that she is reacting to my voice. Probably not, but it sure makes me feel special :)

I can tell you this, I'm absolutely screwed.

Thankful Thursday - Pregnant Neighbors & Master's

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. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

Mandi zonked out a little early tonight and I didn't have the heart to wake her up. She's growing a baby and finds herself a lot more tired lately!

Ronnie's List:

I'm thankful for the completion of our birthing class. We just completed a birthing class that went over pregnancy from womb to tomb. We certainly learned a lot over these past four weeks and now it's just going to come down to our ability to recall what we've learned. I can tell you this - I can't wait to use all of the comforting techniques on Mandi when the time calls for it.

I'm thankful for our pregnant neighbor. We have neighbors who are about 5 weeks behind us in their pregnancy. They also have the cutest little 2 year old girl ever! Kelly (our neighbor) was overjoyed when hearing that we were pregnant with a little girl as she is going to have another little princess. I'm pretty sure there are already plenty of fantasies about future play dates being had by all parties involved.

I'm thankful for continued education. My brother recently moved up to Phoenix in order to pursue a master's degree in Family and Marriage Therapy. I think that it's so cool that he decided to pursue a masters degree and the family couldn't be more proud. He will be the first in the immediate family to obtain a master's degree and to be honest, I'm already pushing him to get his doctorate :)

So, what are you thankful for today?

Germs at Work & The Best Compressor in the World!!

Had another great question thrown my way yesterday that I thought I would share as I'm sure that many of you have had similar thoughts or been in the same predicament.

I have a question for you...I totally respect your opinion and would love it if i could ask for it I have a little girl with CF I am looking at accepting a position in the ER...I will be going into rooms and registering them into the system. Do you think this would be putting her health at risk? I have posed this question to everyone at the hospital and they are of the opinion if I am taking the necessary precautions, I should be ok. The reason I am looking into this is because the hours work so that I can still stay home with her during the day. AAAAHHH....help???

I know CFers that work in the healthcare field and they've all been told the same thing as well - Do your best to protect yourself and use common sense. I wouldn't be too worried about it momma. Sounds like a great opportunity.

This was recently said on CL and it relates to your question...

"I work on a trauma floor and we have tons of sick people there. to avoid me bringing it home to my little cyster and fibro i avoid all contact with them right when i walk through the door and my shoes never see the inside of my house."

Could always do that if you'd like to be extra cautious.

Also, I worked for a couple of years in a homeless shelter and there was more sickness in that place than you could shake a stick at. My doctors gave me the same advice that I started with - Do your best to protect yourself and use common sense.

Hope that helps!!

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Also had another question from a momma concerning a compressor and my thoughts on the Mobilaire that I use. This is one of the most common questions I get, so I figured it wouldn't hurt to post this as well.

I saw on an old thread on CL that you use the Mobilaire 50 psi compressor. A few other friends either have it or are using it. So I am also polling them. What are your favs and not so favs about it? We will also have the VIOS or even the old Pro Neb Ultra for travel, but day to day is the Mobilaire worth the investment? Our clinic is supportive in writing the script since we have gone through so many PARI machines...

As far as a compressor...after I blew through 3 PARIs in 18 months, I decided that enough was enough. I went ahead and splurged on the Mobilaire and I haven't looked back since. It makes a WORLD of difference. The biggest thing the treatments take away from us is time. This compressor gives some of that time back. It literally cut my treatment time in half.

I travel with mine as well since I travel so often and it really affords me the opportunity to fill my travel days with stuff that I need to get done because I don't have to be at the hotel for hours on end doing treatments. It is a bit heavy to lug around, but for me it's worth it.

If you're looking for a compressor for day-to-day home use, honestly, this purchase is a no-brainer!! I couldn't encourage you enough to get the Mobilaire.

Favs - It's fast, effective and durable
Not favs - Wish it were lighter and less bulky for travel, but that would probably cut down on the power it has.

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Wedding and Power of Two Movie

What a great weekend (as you can tell by Mandi Monday being posted on Tuesday)!

As Ronnie posted, we were in California for a good friend’s wedding. The wedding was in one of my favorite places in the country, Newport Beach. I absolutely love everything about that place; the weather, the quant strip of shops and restaurants, the houses, the beach…I could go on forever. I could live anywhere in the country and bring our families with us, I would move us all to Newport Beach. The only catch is that we’d all need to be multi-millionaires to buy homes there!

It was awesome visiting my favorite town, and for such a great event. Kirra and Tyler’s wedding weekend was fantastic. The rehearsal dinner was great, the wedding was wonderful, and the brunch on Sunday was amazing. It was great to get to spend time with them and share such a joyous event in their lives.

One last minute addition to our trip was yesterday (we extended our trip by a day). Last week we received an email from the folks behind The Power of Two movie about premiers being held in LA this weekend. Because CysticLife is a Community Partner of The Power of Two and because Ronnie and I are HUGE fans of all that Ana and Isa do for the CF community, we decided that we had to go to one of the premier showings of the documentary.

Holy smokes - it was amazing. Ana and Isa are such huge inspirations to Ronnie and me (and the whole CF community). I was so excited to watch a film about their great accomplishments and life stories. I was not disappointed. I recommend this film to everyone in the CF community, transplant community, and really, anyone who likes an inspiring story about two great people. I’m eagerly awaiting its release onto DVD so I can purchase a copy to watch anytime! I can’t rave enough about these two women and I can’t say enough about what they have created with this documentary. There are additional showings, and I highly recommend going if you can. If you can’t, wait eagerly for a chance to purchase a DVD!!

Another awesome coincidence is that because we were headed to the premier, we were able meet with a dear friend and business colleague who lives in Santa Monica. She has been out on maternity leave and we’ve missed her in all of our work dealings. So getting a chance to meet up with her for a couple of hours and see her handsome little boy (I can only hope Peanut will be ½ as cute) was incredible.

All in all it was an awesome vacation, mixed with a little business!