Saturday, November 29, 2014
Small Business Saturday!
This year for Small Business Saturday, we're teaming up with our absolute FAVORITE small business (besides Spray Pal) to bring you some awesome giveaways and fun!
The purpose behind Small Business Saturday is to get holiday shoppers to focus on the benefits of spending your money where it really counts. Big box stores always have great deals, but that's because the can afford to! Small businesses offer the best deals that they can, but the overhead for running their business comes directly from their paycheck. So you can see why most small businesses can't really offer those deep 30,40, even 50% discounts. But, when you think about what you're paying for, you might think twice about where you spend your hard earned dollars.
Here at Spray Pal, you're paying for a product that is made in the USA with the highest quality materials. Our splatter shield is BPA free and made from 50% post-consumer recycled polyethylene. Every once in a while the post office roughs up one of our packages or one of our clips might have a quality control issue. And by shopping small with us, you know that you can send us a message any time and we will help resolve your issue. You can't beat the customer service. Plus, you get to feel good knowing that your dollars are not only saving your time and money on bathroom cleaning supplies over the long run, but you're also supporting a hard working family, allowing me to work from home and around my kids' schedules, and you're helping cover the crazy medical expenses and insurance stuff we deal with as my other "full time" job. ;)
So, stay tuned as we share about the fun people behind the scenes at Spray Pal on Instagram and our Facebook page throughout the day!
Now, on to our OTHER favorite local small business! If you follow us on social media, you can probably guess who I'm talking about: my brother's place, Beach City Brewery! Who knew back when we were kids that when we grew up, we'd both end up owning businesses in our 30s! When I was in college at UC Irvine working toward my teaching degree, and my kid brother was still at Servite High School, I NEVER in a million years would've guessed that in just over a decade I would be selling a cloth diapering accessory and helping #makeclothmainstream out of my home while he was opening up a craft beer brewery just about a mile away! Life is crazy, I'm telling you.
My brother, Glenn, and I have teamed up today to bring you a special SIBLINGS edition of Small Business Saturday! All you have to do is show us how you are shopping small this weekend. Enjoying nice weather? Head to your local cloth diapering store and take a selfie of yourself shopping there. Or head out to a local watering hole and order yourself a local craft beer (legal stuff should be said here, I'm sure. Be over 21, have a DD, etc.) Weather not so great? Order from a small business online and show us a screen shot of your order! (Just make sure we can't see your address or other personal info...don't want that stuff leaking on the interwebs!) The best of ALL these worlds would be if you stopped by Beach City Brewery in Huntington Beach, CA today and then ordered something from the Spray Pal from your phone while there. OMG, instant winner right there! ;)
Do any of the above this weekend (through Cyber Monday), take a photo or video and share it on social media, and then TAG US so we can see it! You can also use the hashtags #craftbeermeetsclothdiapers and #smallbizsat. Then come back here and grab all your entries in the rafflecopter to win prizes from us! We bought some BCB gift cards (perfect for SoCal locals) and we have some great cloth diapering prizes that we'll be giving out to non-locals. Thank you for supporting small business this year!
www.facebook.com/spraypalusa
www.facebook.com/beachcitybrewery
Instagram: @spraypal and @beachcitybrewery
Twitter: @spray_pal and @BeachCityBrew
a Rafflecopter giveaway
Friday, November 28, 2014
Why I LOVE Small Business.
Well, that's easy. Because we are one. The end. #thanksforlistening
OK, just kidding. That's not the only reason. ;)
There really are too many reasons to list. But let's just say after spending over an HOUR on the phone with an amazon.com rep trying to figure out why they couldn't get the promotional code I had set up for our customers to work, it confirmed everything I'd ever felt about the differences between big and small businesses. And then I said EFF YOUR PROMO CODE and just went and changed the price myself. Because it's EASIER. Why do they always have to complicate things?!
Anywho...here is the FLASH DEAL that was supposed to go live earlier this afternoon. Just click the link and buy...no code needed! I've taken $10 off the regular price ($54.95) of our diaper sprayer on amazon through Small Business Saturday (or while supplies last). You may notice that we don't have any reviews of the Spray Pal diaper sprayer on there yet. If you're curious about how awesome this sprayer is, you can check out the Bumkins sprayer reviews which are pretty phenomenal. They worked with us to make the Spray Pal sprayer, and the quality really is the best we could find on the market.
If you're looking for deals on the Spray Pal sprayer and splatter shield, check our website! We've got discounts and freebies all weekend long, plus free shipping over $20!
Can't wait to show you all the fun stuff we have up our sleeves for #SmallBusinessSaturday tomorrow!! Let's just say...small business runs in the family now.
#craftbeerandclothdiapers #makeclothmainstream
OK, just kidding. That's not the only reason. ;)
There really are too many reasons to list. But let's just say after spending over an HOUR on the phone with an amazon.com rep trying to figure out why they couldn't get the promotional code I had set up for our customers to work, it confirmed everything I'd ever felt about the differences between big and small businesses. And then I said EFF YOUR PROMO CODE and just went and changed the price myself. Because it's EASIER. Why do they always have to complicate things?!
Ignore that 5-7pm time limit. We'll let it go through tomorrow since amazon made things so difficult! |
Anywho...here is the FLASH DEAL that was supposed to go live earlier this afternoon. Just click the link and buy...no code needed! I've taken $10 off the regular price ($54.95) of our diaper sprayer on amazon through Small Business Saturday (or while supplies last). You may notice that we don't have any reviews of the Spray Pal diaper sprayer on there yet. If you're curious about how awesome this sprayer is, you can check out the Bumkins sprayer reviews which are pretty phenomenal. They worked with us to make the Spray Pal sprayer, and the quality really is the best we could find on the market.
If you're looking for deals on the Spray Pal sprayer and splatter shield, check our website! We've got discounts and freebies all weekend long, plus free shipping over $20!
Can't wait to show you all the fun stuff we have up our sleeves for #SmallBusinessSaturday tomorrow!! Let's just say...small business runs in the family now.
#craftbeerandclothdiapers #makeclothmainstream
Sunday, November 23, 2014
The Gratitude Giveaway from Spray Pal
Around this time of year, people start reflecting on the many things they are thankful for in their lives. And Mr. Spray Pal and I are obviously thankful for the obvious. Good health, loving and supportive family and friends, and of course our two beautiful children. But there's a group of people in this world that we're thankful for that we really don't want to go unnoticed. And that is all of YOU!
We are so blessed to have the most amazing fans and followers, and I know I say it a lot, but you guys really are the best. You're always positive and upbeat, you support one another in your cloth diapering journeys, you support US in our roller coaster of a journey with mini Spray Pal 2.0, and we truly can't show you enough gratitude for the smiles and joy you have brought us, just with a simple "like" or comment.
As a very small token of our appreciation, we're going to do a Gratitude Giveaway. We'll be giving away a complete diaper spraying system, which we lovingly call the "What Do I Do with the POOP?" bundle. ;) This includes a Spray Pal diaper sprayer and a Spray Pal splatter shield.
We tried to make it simple for everyone to enter. You don't have to do much to get the first 10 FREE entries. If you feel like following us on social media or sharing, etc. feel free. But anyone who clicks that free entry button gets 10 chances to win. We wanted to keep it simple for you.
SO, thank you for being so awesome. And we can't WAIT to show you even more amazing things in 2015!!
a Rafflecopter giveaway
Sunday, November 16, 2014
Men of the Baby Industry Calendar 2014
Men of the Baby Industry Calendar Trailer:
In the span of just a few short weeks, what started out as a crazy four in the morning brain worm has turned into a reality! Luckily for me, when a far-fetched idea pops into my head at 4am and won't go away, being on the West Coast means that there's sure to be some East Coast friends who are already up and consuming coffee to help me run with it. Enter Kim Rosas from Dirty Diaper Laundry, Amanda Hearn from Green Child Magazine, and Calley Pate from The Eco Chic.
Our little "Dream Team of Cloth Diapers" (ohhhh...#makeclothmainstream Dream Team??) managed to gather together 12 of the best known brands of the baby industry (it's a little heavy on the cloth diaper related brands for obvious reasons) and get their men to pose for pictures so that we could put together the most amazing calendar you'll see for 2015 just in time for the holidays.
This calendar is awesome for a million reasons. Let me count (some of) the ways:
1. You'll get to "meet" some of the men behind your favorite brands in cloth diapering and babywearing.
2. 100% of the profits will go to Giving Diapers, Giving Hope to help families in need get cloth diapers on their babes.
3. We'll be sending these out to our retailers as a gift so they can hang them in their shops and #makeclothmainstream all year long.
4. Jamie Grayson AND Angry Baby from TheBabyGuyNYC get a month.
5. Mr. Spray Pal goes Clark Kent (-ish). I don't know about you all, but this has been a personal fantasy of mine, sooooo...yeah ;)
6. It makes THE perfect gift for the cloth diapering mom who truly has everything. Hang it in your home and invite people over to admire it. Imagine the conversations it will inspire! Give one to your boss to hang in their office. They'll surely treasure it forever. Bring one in to your local coffee shop or market and hang it prominently and proudly. You're sure to make loads of cloth converts with this calender as your secret weapon.
All that said, please join us November 25th for our huge Google + reveal party! We'll be giving away FIVE of these amazing calendars along with prizes from some of the 12 participating sponsors for 2014. Now, if you're like me, you're thinking...Google +? How am I supposed to figure THAT one out? And I don't have the answer to that because I'm still figuring it out myself. BUT. I can tell you it will be worth it because it's way better than a FB chat or Twitter party in that the hosts will all be chatting live on their webcams. And they'll probably all be drinking. So you'll want to get your Google + account set up in advance so you won't miss it. ;) Once you have it set up, you can RSVP and get your giveaway entries here:
a Rafflecopter giveaway
In the span of just a few short weeks, what started out as a crazy four in the morning brain worm has turned into a reality! Luckily for me, when a far-fetched idea pops into my head at 4am and won't go away, being on the West Coast means that there's sure to be some East Coast friends who are already up and consuming coffee to help me run with it. Enter Kim Rosas from Dirty Diaper Laundry, Amanda Hearn from Green Child Magazine, and Calley Pate from The Eco Chic.
Our little "Dream Team of Cloth Diapers" (ohhhh...#makeclothmainstream Dream Team??) managed to gather together 12 of the best known brands of the baby industry (it's a little heavy on the cloth diaper related brands for obvious reasons) and get their men to pose for pictures so that we could put together the most amazing calendar you'll see for 2015 just in time for the holidays.
This calendar is awesome for a million reasons. Let me count (some of) the ways:
1. You'll get to "meet" some of the men behind your favorite brands in cloth diapering and babywearing.
2. 100% of the profits will go to Giving Diapers, Giving Hope to help families in need get cloth diapers on their babes.
3. We'll be sending these out to our retailers as a gift so they can hang them in their shops and #makeclothmainstream all year long.
4. Jamie Grayson AND Angry Baby from TheBabyGuyNYC get a month.
5. Mr. Spray Pal goes Clark Kent (-ish). I don't know about you all, but this has been a personal fantasy of mine, sooooo...yeah ;)
6. It makes THE perfect gift for the cloth diapering mom who truly has everything. Hang it in your home and invite people over to admire it. Imagine the conversations it will inspire! Give one to your boss to hang in their office. They'll surely treasure it forever. Bring one in to your local coffee shop or market and hang it prominently and proudly. You're sure to make loads of cloth converts with this calender as your secret weapon.
All that said, please join us November 25th for our huge Google + reveal party! We'll be giving away FIVE of these amazing calendars along with prizes from some of the 12 participating sponsors for 2014. Now, if you're like me, you're thinking...Google +? How am I supposed to figure THAT one out? And I don't have the answer to that because I'm still figuring it out myself. BUT. I can tell you it will be worth it because it's way better than a FB chat or Twitter party in that the hosts will all be chatting live on their webcams. And they'll probably all be drinking. So you'll want to get your Google + account set up in advance so you won't miss it. ;) Once you have it set up, you can RSVP and get your giveaway entries here:
a Rafflecopter giveaway
Thursday, November 13, 2014
The BEST homemade latte. Seriously.
Alternate Title: This is Somehow (Sort of) Related to Cloth Diapers.
It may seem like a stretch, but bear with me, this is absolutely related to cloth diapers. Just wait for it. I'm about to show you the absolute easiest, most delicious way to save $28 dollars a week (plus the cost of gas!) on fancy coffee drinks from fancy coffee shops. You're probably thinking I'm going to recommend an expensive, high end espresso maker with milk frother attachment, right? WRONG! You must not know me well, because I'm WAY too cheap for that! Not too mention my kitchen is WAY too small to store anything like that. Counter space in our kitchen is some highly sought after real estate. ;)
Yes, there is a purchase required, but it's not what you think. I bought two items off amazon for around $40 (and free shipping with amazon prime). These two items are simple to use, easy to clean, and easy to store, which is reason number one that this is related to cloth diapers because doesn't that sound exactly like the Spray Pal splatter shield?? And while I can see how you might easily confuse the products, and knowing that the shield is food grade plastic free of all harmful chemicals, we actually don't recommend using your Spray Pal shield to make the world's best latte. ;) Just grab yourself these two products and follow our simple photo tutorial!
So, once you have the Aeropress Coffee and Espresso Maker and the
Aerolatte Milk Frother, you'll just need to grab your favorite ground
coffee and some milk. You can see in the photos below that we love to
use organic ground espresso, organic milk, and organic vanilla creamer
and I can tell you that with the money I'm saving on Starbucks after
buying these things, it's well worth it!
Twist the little filter holder on the bottom of this contraption. Then add two scoops of your favorite coffee. The scoop is included in the package! |
Heat about 8 ounces of water and then pour it in with the ground coffee. Make sure you set the contraption on a sturdy mug. |
Use the stirrer provided to stir the water and grounds for 10 seconds. |
Insert the pusher contraption and slowly push it down to force the coffee through the filter and into the mug. When this is done, I pour the coffee into the glass pyrex I had used to heat the water. |
The BEST homemade latte ever! |
See? It's super easy and well worth the $40 some dollars I spent because I've seriously cut back on running out to the coffee shop for an afternoon pick me up. I've been using this method for about a month and a half now, and I'd say it has easily paid for itself and then some. :)
And so finally, how is this all related to cloth diapers? Well, you probably already caught that Spray Pal reference earlier, but besides that, coffee is basically what makes our business run. Without it, I don't believe I'd function at more than 50% of my current state, lol. So, you see, without these lattes, Spray Pal might not exist as it does now, and cloth diapering wouldn't be nearly as easy, and we wouldn't be working nearly as hard to #makeclothmainstream!! Therefore, totally related. ;)
And so finally, how is this all related to cloth diapers? Well, you probably already caught that Spray Pal reference earlier, but besides that, coffee is basically what makes our business run. Without it, I don't believe I'd function at more than 50% of my current state, lol. So, you see, without these lattes, Spray Pal might not exist as it does now, and cloth diapering wouldn't be nearly as easy, and we wouldn't be working nearly as hard to #makeclothmainstream!! Therefore, totally related. ;)
Saturday, November 1, 2014
Ryan's Cochlear Implant Journey Update
It's finally raining in Southern California, so we're taking advantage of the fact that we aren't sitting in a hospital waiting room right now and I'm cuddled up under a blanket with Dani watching Cinderella and recovering from our Halloween candy coma. Ryan and Dave are in the kitchen enjoying the rest of the Greek yogurt pancakes I had time to make this morning because we weren't driving to UCLA in the dark hours of the morning. Well, Dave is enjoying them while Ryan watches as he gets his blended diet through his g-tube.
With all this peace surrounding us, I figured now was a good time to write out all my stress, frustration, and anger from the past 2 months. If you've been following us since the NICU days (ahem, months), then you already know that writing is my outlet for these negative feelings. And I often spin them to be as positive as possible in writing because it makes me feel better, and plus my grandparents will read this, and I don't want them to stress. ;)
One of the main reasons I want to put this out to everyone is because a few comments about "The doctor's know what's best" and "Better safe than sorry" got to me. And I'm not upset with those who commented by any means, I know they are completely well-intentioned, but I feel they are misinformed and I figured it was better to just write out our side of the story for those who are interested.
Here goes, and I'll try to do this in timeline form as much as possible:
March 2012-Oct. 2012: Ryan was born at 25 weeks and remained in the NICU for this time. Early on he showed signs of hearing. Responding to voice and musical toys, getting aggravated by the fire alarm even when completely enclosed in his isolette, etc. Then he had an eye surgery in August which led to a tracheal infection which led to crazy harsh antibiotics and the scariest episode of our NICU stay. 2 months later he was given the newborn hearing screening before discharge from the NICU and he failed, much to our surprise.
January 2103: Official ABR testing is completed and we discover Ryan is profoundly deaf in both ears. She actually said, "This is what people refer to as 'stone deaf.'" We were told our next step was to find an ENT and have testing done on his inner ear anatomy to see if he would be a cochlear implant candidate.
March 2013-June 2013: ENT ordered CT scan and MRI and ear anatomy checked out as normal which meant he was a good candidate for CI (cochlear implant).
June 2013: Began the search for a CI surgeon. After much research and speaking to many parents who had been through this before, we decided on the House Institute. We met with the highest recommended doctor, and he was nervous about Ryan's general health and suggested we wait 6 more months for him to grow stronger. So we did. Then Sept hit and we realized flu season was looming. We talked it over with his pulmonologist and cardiologist and both agreed it would be better to get him in for a surgery ASAP rather than wait the full 6 months which would put him right in the middle of flu season. We weighed all the pros and cons, and this was their recommendation, which we trusted because they know him best out of all his doctors.
September 2013: We began the process of meeting with our House Institute doctor again to get the surgery set sooner rather than later for the CI to avoid flu season because he agreed with the pulmonologist and cardiologist. Only problem was, with all the red tape and craziness of our medical system, book appointments and getting the required testing completed took us all the way into December.
December 2013: All CI testing completed, he is recommended for a double implant with surgeries one at a time, 6-12 months apart. Let the scheduling process for surgery begin.
January through March 2014: Dave and I spent numerous hours on the phone with the schedulers and the insurance following up, making sure things were moving forward, etc. Finally on March 23rd (3 days after Ryan's 2nd birthday), we found out there was an opening in the OR and he could get in for surgery one week later.
March 30, 2014: The House Institute doctor attempted to implant the device and wasn't able to because once he opened up Ryan's ear he found thick mucous inside the middle ear that no one had detected from the outside. There was no outward sign of infection, no fever, redness, nothing. This was probably just something that had accumulated throughout the flu season and become a chronic issue.
April-June 2014: Meet with various ENTs (I say various because we'd meet with one and they would inform us they were no longer in our insurance network, so we'd have to find another one, and so on). They tried numerous courses of antibiotics to remove the chronic fluid in his ears, to no avail. So in the end of June he went under anesthesia to get tubes placed in his ears. The procedure was successful and he did great, but the doctor came out after and informed us that there was no fluid in there when he put the tubes in. Go figure.
Summer 2014: We began the search for a new CI surgeon because our doctor at the House Institute was no longer in our insurance network. We actually got a call from our former ENT at CHOC because they were starting a CI program there and they knew Ryan was a candidate. We were ecstatic and figured that maybe this was why things hadn't been working out in LA so far because now he could have everything done close to home with doctors who know him. Unfortunately, the doctor was in a car accident in August and injured his legs and wouldn't be able to perform surgery until at least November (oh man, this just made a light bulb go off since it's November 1st right now!). So, we continued our search for a surgeon because we really wanted to get Ryan in before flu season. He's been tested, he's a candidate, and he's healthy and ready. And the longer we wait, the more he falls behind developmentally.
September 2014: On the 2nd of this month, we met with our current surgeon at UCLA for the first time. We explained all that I've written here and our incredibly difficult journey to get our son a cochlear implant so far, and the doctor was amazingly supportive and understanding. He explained that he has a very busy schedule and is already booking surgeries out into November, but he would do his best to get Ryan in for surgery before flu season hits (which in SoCal is officially Nov. 1st, but illnesses always show up sooner).
We jumped through every hoop. We drove out for more audiological tests even though we'd already been through everything less than a year prior, they wanted to test him themselves. So we obliged. When I hadn't received a call from the surgery scheduler by the end of September, I called them. And I found out they hadn't even turned in the authorization request to our insurance yet!! That's when I realized we'd have to be doing much more on our end to get this scheduled.
So I called constantly. I know I was *that* mom, but you get to a point when you have a medically complicated kid that you just can't care anymore if you're annoying people with your calls. This is how the system works. Here's how a typical interaction would go:
Me: How are things coming along, anything I can do to help?
Surgeon's office: We've called the ENT and pulmonologist for his records, and they told us, we'll have it in 7-10 days, so we'll let you know when we get it.
Me: Oh, ok. That's great. Thanks.
*Click* :::calls ENT and pulmonologist offices to give fax number directly and request records to be sent::::
:::Calls Surgeon's Office back::::
Them: Oh, yes, it looks like we have the records we need. I'm in the clinic on rounds today, but I'll be able to go over all of this with the doctor tomorrow and we'll call you back to schedule surgery soon.
Me: Ok, that's great. Thanks.
A few days later, no call.
Me: Did you get a chance to go over those records with the doctor yet?
Them: Oh, actually we have a CI meeting tomorrow. I'll go over it with him them. But it turns out we need XYZ from so and so before we can schedule.
AND SO ON.
Another month of all that back and forth and we finally got a date for November 21st. And of course I was upset because that was WELL into flu season and with a 4 year old in preschool living in our home, the chances of some sort of germ traveling into his system before then is pretty high. So I called the scheduler and begged them to see if they had anything else. I told her our whole journey from Sept. 2nd until now and how he's medically sensitive and really healthy right now and if we wait it's really risky, etc. (This was on Wednesday, October 29th) She ended up emailing me that evening that they had an opening this Saturday (today, Novemeber 1st) and that we should schedule our pre-op with our pediatrician right away, so we did. And we stayed awake and freaked out and secretly rejoiced that it was finally going to happen, but not outwardly yet because we knew a lot could chance in the 3 days we had to wait. He could get sick. That was our greatest concern. If he got sick, all bets were off.
Except he didn't get sick. He held up his end of the bargain. And on Halloween morning, the day before his surgery, the nurse called us to check him in over the phone and give us instructions, and the anesthesia department called to go over his history, and by 11am we started to outwardly rejoice because things were FINALLY falling into place!
Then I got a call at 12:20pm, just as I was finishing lunch and about to get Dani ready for her preschool Halloween parade. It was UCLA, I could tell from the area code, so I picked up and it was a brand new scheduler person. She said, "I have some bad news, it looks like we're missing your pulmonary clearance for anesthesia." 1) I know I personally talked to the person in pulmonary who faxed over everything we need the week prior and 2) how are they JUST telling me this right now, during the Friday lunch hour for doctors's offices everywhere?! Oh, and she tells me, "I'm in the office until 2pm, if you can give me the numbers to call I can try to get it faxed over." YEAH RIGHT.
So I called EVERYONE I could and left tearful messages about how hard we've worked to get this surgery scheduled and we just need this one note from one doctor and we just found out and I know it's lunch time and I pray you hear this and here's the fax number. Then it was 1:15 and I was walking Dani to her Halloween parade which was scheduled to last until 2pm, and I had given up hope because I'd done everything I could and there was nothing else I could do before 2pm when this lady left the office. And then my phone rang, and it was her. And she said, "It's some sort of miracle, but we just received the clearance we needed, so you're all set. Well done, mom. I've never seen anything come in that quickly!" AMEN, HALLELUJAH!! I finally felt like I could breathe and enjoy the day with my kids and just get through ONE more sleepless night before he'd finally get his implant.
Then, as we were getting ready for our friends to come over for some trick or treating, I got another call from the UCLA area code. Which made me especially nervous because it was 5:30pm. I picked up and it was the surgeon. He said he had spoken with the anesthesiologist who would be working on our case and he was requesting another heart work up. He couldn't clearly read the echos and he wanted UCLA to do another one because he was concerned about his pulmonary hypertension. I took a very deep breath and calmly began to explain why this was completely ridiculous since he'd been cleared of the PPHN for almost a year and had already easily tolerated the same surgery in March and....within a minute he said he wanted me to speak directly to the anesthesiologist. So he called me within 5 minutes and I stepped into the backyard and paced back and forth explaining that his heart was the least of our concerns right now, the biggest issue is the fact that his lungs don't do well in flu season and if we push back the surgery we risk giving him more time to get SICK. He asked a million questions about past procedures, meds, hospital stays, etc. and of course I was able to answer every single one and point out that we are WELL aware of the risks and we've consulted with every doctor and jumped through every hoop and WE know our son better than anyone and there's no way that WE would put him at risk for an elective surgery if we hadn't already thought in all the way through forwards and backwards from here until Sunday. So he left it with, "Well, with PPHN there's always the chance that something could go wrong and cause a recurrence and you'd want to have the best team there on the off chance that this were to happen. And if you do the surgery on a weekend, you won't have the best team there." Which I have to admit now that I'm calmer does make sense. But I told him that his schedulers had informed me that the next opening would be Nov 14th or 21st, and I think that at this point 2-3 weeks out is too far to wait. He told me he would speak to the surgeon and see if he could make arrangements to see us this week. So he called me right back and said the surgeon had openings Monday and Wednesday of this week that he would try to get Ryan in for surgery. Then the surgeon himself called me again and concurred that he had openings Monday and Wednesday but they wouldn't be able to schedule us until the schedulers were back in the office on Monday (which to me means that a Monday surgery is not likely to happen). So let's all keep our fingers crossed for Wednesday!
Thanks for reading if you made it this far, lol. It felt good to get it all out and now I'll have one convenient place to send people when they ask what happened so I don't have to keep typing out cliff notes versions. ;) I'll keep you updated about our next date! Thank you all for the love and support you give Ryan and our family, we truly appreciate it!
With all this peace surrounding us, I figured now was a good time to write out all my stress, frustration, and anger from the past 2 months. If you've been following us since the NICU days (ahem, months), then you already know that writing is my outlet for these negative feelings. And I often spin them to be as positive as possible in writing because it makes me feel better, and plus my grandparents will read this, and I don't want them to stress. ;)
One of the main reasons I want to put this out to everyone is because a few comments about "The doctor's know what's best" and "Better safe than sorry" got to me. And I'm not upset with those who commented by any means, I know they are completely well-intentioned, but I feel they are misinformed and I figured it was better to just write out our side of the story for those who are interested.
Here goes, and I'll try to do this in timeline form as much as possible:
March 2012-Oct. 2012: Ryan was born at 25 weeks and remained in the NICU for this time. Early on he showed signs of hearing. Responding to voice and musical toys, getting aggravated by the fire alarm even when completely enclosed in his isolette, etc. Then he had an eye surgery in August which led to a tracheal infection which led to crazy harsh antibiotics and the scariest episode of our NICU stay. 2 months later he was given the newborn hearing screening before discharge from the NICU and he failed, much to our surprise.
January 2103: Official ABR testing is completed and we discover Ryan is profoundly deaf in both ears. She actually said, "This is what people refer to as 'stone deaf.'" We were told our next step was to find an ENT and have testing done on his inner ear anatomy to see if he would be a cochlear implant candidate.
March 2013-June 2013: ENT ordered CT scan and MRI and ear anatomy checked out as normal which meant he was a good candidate for CI (cochlear implant).
June 2013: Began the search for a CI surgeon. After much research and speaking to many parents who had been through this before, we decided on the House Institute. We met with the highest recommended doctor, and he was nervous about Ryan's general health and suggested we wait 6 more months for him to grow stronger. So we did. Then Sept hit and we realized flu season was looming. We talked it over with his pulmonologist and cardiologist and both agreed it would be better to get him in for a surgery ASAP rather than wait the full 6 months which would put him right in the middle of flu season. We weighed all the pros and cons, and this was their recommendation, which we trusted because they know him best out of all his doctors.
September 2013: We began the process of meeting with our House Institute doctor again to get the surgery set sooner rather than later for the CI to avoid flu season because he agreed with the pulmonologist and cardiologist. Only problem was, with all the red tape and craziness of our medical system, book appointments and getting the required testing completed took us all the way into December.
December 2013: All CI testing completed, he is recommended for a double implant with surgeries one at a time, 6-12 months apart. Let the scheduling process for surgery begin.
January through March 2014: Dave and I spent numerous hours on the phone with the schedulers and the insurance following up, making sure things were moving forward, etc. Finally on March 23rd (3 days after Ryan's 2nd birthday), we found out there was an opening in the OR and he could get in for surgery one week later.
March 30, 2014: The House Institute doctor attempted to implant the device and wasn't able to because once he opened up Ryan's ear he found thick mucous inside the middle ear that no one had detected from the outside. There was no outward sign of infection, no fever, redness, nothing. This was probably just something that had accumulated throughout the flu season and become a chronic issue.
April-June 2014: Meet with various ENTs (I say various because we'd meet with one and they would inform us they were no longer in our insurance network, so we'd have to find another one, and so on). They tried numerous courses of antibiotics to remove the chronic fluid in his ears, to no avail. So in the end of June he went under anesthesia to get tubes placed in his ears. The procedure was successful and he did great, but the doctor came out after and informed us that there was no fluid in there when he put the tubes in. Go figure.
Summer 2014: We began the search for a new CI surgeon because our doctor at the House Institute was no longer in our insurance network. We actually got a call from our former ENT at CHOC because they were starting a CI program there and they knew Ryan was a candidate. We were ecstatic and figured that maybe this was why things hadn't been working out in LA so far because now he could have everything done close to home with doctors who know him. Unfortunately, the doctor was in a car accident in August and injured his legs and wouldn't be able to perform surgery until at least November (oh man, this just made a light bulb go off since it's November 1st right now!). So, we continued our search for a surgeon because we really wanted to get Ryan in before flu season. He's been tested, he's a candidate, and he's healthy and ready. And the longer we wait, the more he falls behind developmentally.
September 2014: On the 2nd of this month, we met with our current surgeon at UCLA for the first time. We explained all that I've written here and our incredibly difficult journey to get our son a cochlear implant so far, and the doctor was amazingly supportive and understanding. He explained that he has a very busy schedule and is already booking surgeries out into November, but he would do his best to get Ryan in for surgery before flu season hits (which in SoCal is officially Nov. 1st, but illnesses always show up sooner).
We jumped through every hoop. We drove out for more audiological tests even though we'd already been through everything less than a year prior, they wanted to test him themselves. So we obliged. When I hadn't received a call from the surgery scheduler by the end of September, I called them. And I found out they hadn't even turned in the authorization request to our insurance yet!! That's when I realized we'd have to be doing much more on our end to get this scheduled.
So I called constantly. I know I was *that* mom, but you get to a point when you have a medically complicated kid that you just can't care anymore if you're annoying people with your calls. This is how the system works. Here's how a typical interaction would go:
Me: How are things coming along, anything I can do to help?
Surgeon's office: We've called the ENT and pulmonologist for his records, and they told us, we'll have it in 7-10 days, so we'll let you know when we get it.
Me: Oh, ok. That's great. Thanks.
*Click* :::calls ENT and pulmonologist offices to give fax number directly and request records to be sent::::
:::Calls Surgeon's Office back::::
Them: Oh, yes, it looks like we have the records we need. I'm in the clinic on rounds today, but I'll be able to go over all of this with the doctor tomorrow and we'll call you back to schedule surgery soon.
Me: Ok, that's great. Thanks.
A few days later, no call.
Me: Did you get a chance to go over those records with the doctor yet?
Them: Oh, actually we have a CI meeting tomorrow. I'll go over it with him them. But it turns out we need XYZ from so and so before we can schedule.
AND SO ON.
Another month of all that back and forth and we finally got a date for November 21st. And of course I was upset because that was WELL into flu season and with a 4 year old in preschool living in our home, the chances of some sort of germ traveling into his system before then is pretty high. So I called the scheduler and begged them to see if they had anything else. I told her our whole journey from Sept. 2nd until now and how he's medically sensitive and really healthy right now and if we wait it's really risky, etc. (This was on Wednesday, October 29th) She ended up emailing me that evening that they had an opening this Saturday (today, Novemeber 1st) and that we should schedule our pre-op with our pediatrician right away, so we did. And we stayed awake and freaked out and secretly rejoiced that it was finally going to happen, but not outwardly yet because we knew a lot could chance in the 3 days we had to wait. He could get sick. That was our greatest concern. If he got sick, all bets were off.
Except he didn't get sick. He held up his end of the bargain. And on Halloween morning, the day before his surgery, the nurse called us to check him in over the phone and give us instructions, and the anesthesia department called to go over his history, and by 11am we started to outwardly rejoice because things were FINALLY falling into place!
Then I got a call at 12:20pm, just as I was finishing lunch and about to get Dani ready for her preschool Halloween parade. It was UCLA, I could tell from the area code, so I picked up and it was a brand new scheduler person. She said, "I have some bad news, it looks like we're missing your pulmonary clearance for anesthesia." 1) I know I personally talked to the person in pulmonary who faxed over everything we need the week prior and 2) how are they JUST telling me this right now, during the Friday lunch hour for doctors's offices everywhere?! Oh, and she tells me, "I'm in the office until 2pm, if you can give me the numbers to call I can try to get it faxed over." YEAH RIGHT.
So I called EVERYONE I could and left tearful messages about how hard we've worked to get this surgery scheduled and we just need this one note from one doctor and we just found out and I know it's lunch time and I pray you hear this and here's the fax number. Then it was 1:15 and I was walking Dani to her Halloween parade which was scheduled to last until 2pm, and I had given up hope because I'd done everything I could and there was nothing else I could do before 2pm when this lady left the office. And then my phone rang, and it was her. And she said, "It's some sort of miracle, but we just received the clearance we needed, so you're all set. Well done, mom. I've never seen anything come in that quickly!" AMEN, HALLELUJAH!! I finally felt like I could breathe and enjoy the day with my kids and just get through ONE more sleepless night before he'd finally get his implant.
Then, as we were getting ready for our friends to come over for some trick or treating, I got another call from the UCLA area code. Which made me especially nervous because it was 5:30pm. I picked up and it was the surgeon. He said he had spoken with the anesthesiologist who would be working on our case and he was requesting another heart work up. He couldn't clearly read the echos and he wanted UCLA to do another one because he was concerned about his pulmonary hypertension. I took a very deep breath and calmly began to explain why this was completely ridiculous since he'd been cleared of the PPHN for almost a year and had already easily tolerated the same surgery in March and....within a minute he said he wanted me to speak directly to the anesthesiologist. So he called me within 5 minutes and I stepped into the backyard and paced back and forth explaining that his heart was the least of our concerns right now, the biggest issue is the fact that his lungs don't do well in flu season and if we push back the surgery we risk giving him more time to get SICK. He asked a million questions about past procedures, meds, hospital stays, etc. and of course I was able to answer every single one and point out that we are WELL aware of the risks and we've consulted with every doctor and jumped through every hoop and WE know our son better than anyone and there's no way that WE would put him at risk for an elective surgery if we hadn't already thought in all the way through forwards and backwards from here until Sunday. So he left it with, "Well, with PPHN there's always the chance that something could go wrong and cause a recurrence and you'd want to have the best team there on the off chance that this were to happen. And if you do the surgery on a weekend, you won't have the best team there." Which I have to admit now that I'm calmer does make sense. But I told him that his schedulers had informed me that the next opening would be Nov 14th or 21st, and I think that at this point 2-3 weeks out is too far to wait. He told me he would speak to the surgeon and see if he could make arrangements to see us this week. So he called me right back and said the surgeon had openings Monday and Wednesday of this week that he would try to get Ryan in for surgery. Then the surgeon himself called me again and concurred that he had openings Monday and Wednesday but they wouldn't be able to schedule us until the schedulers were back in the office on Monday (which to me means that a Monday surgery is not likely to happen). So let's all keep our fingers crossed for Wednesday!
Thanks for reading if you made it this far, lol. It felt good to get it all out and now I'll have one convenient place to send people when they ask what happened so I don't have to keep typing out cliff notes versions. ;) I'll keep you updated about our next date! Thank you all for the love and support you give Ryan and our family, we truly appreciate it!