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!
