I admit it. I've been horrible about updating this blog. But honestly, this is a true case of "no news is good news." Ryan has been doing really well, relatively speaking. It's important to speak relatively here because, well, he still throws up a lot, he has so much congestion he wakes himself up coughing, and developmentally, he's still way behind. But when you think of where he was on this exact date last year and through the last new year, none of that matters. Really. None of it. He's home with us, he's not being admitted to a hospital with RSV, his immune system is finally kicking in, and he will most likely have his first Cochlear Implant in the next month or so. ::::knocking on the biggest piece of wood ever::::: We definitely can't complain!
So, if life is so great, why do I need to keep my cool? Well, sit back and relax as I tell you a story that is SO ridiculous, you may not even believe it. In fact, I hardly believe I actually lived it other than the fact that my head is still throbbing from the exertion of showing so much restraint today.
Let's begin. It all started this morning at around 8:45am. Dave and I were in the car driving Ryan to his 9am pulmonary hypertension clinic appointment. In his typical "I will never allow you to bring me to an appointment on time" fashion, Ryan threw up all over himself just as we were getting ready to load him into the car, so we had to clean him up and start over. Don't even feel bad yet, this happens every. single. time. We really should start planning it into the schedule. Anyways, now that we are running 15 minutes behind schedule, I call the hospital clinic on the way there to let them know we are late but on our way so they don't cancel our appointment. After having to "Press 1 to hear this in English" and "Press 2 to make an appointment" at least 13 times, I finally got through to the nice call center man and told him our situation. He told me our appointment would probably be cancelled if we were late, but he could make a note for us, but then he stopped after he looked up Ryan's name and said, "Oh wait, your appointment was already cancelled on Dec. 3rd." Ummmm, what?? I won't even get into that part of the crazy. There's not enough time.
I tell him to transfer me to someone who can get us seen by a doctor today, and he does. She tells me (after I had to press 1 and then 2, of course) that our appointment was indeed cancelled for some reason, but there is an opening at 10:15 due to another cancellation. So we hang out around the hospital and wait for the 10:15 appointment. Finally get seen around 11am by the pulmonary and cardiology specialists. Things were looking up. His doctors are great, I have no complaints about them. They spent a nice chunk of time reviewing our current concerns with Ryan's health and talking with us about everything coming up. That's when we mentioned the Synagis shot.
I should explain a little about Synagis. This is a very expensive shot that is given to kids who are at high risk for contracting RSV. So preemies, babies with heart/lung conditions or immune disorders, etc. typically get approved for it. It's not a live virus like the flu shot, it's made up of antibodies that don't necessarily make you immune to RSV, but they help fight it so that if you do catch it, hopefully it won't be as severe. Since it's not a live virus that would build up in your system over time, this one has to be given in 5 different doses that have to be spread out 25-30 days apart. After 30 days, the dose will wear off and not provide protection. This is our second year getting the Synagis shot, and last year Ryan did end up hospitalized with RSV the day after Christmas even though he had already had 2 doses. The positive side to that is that he didn't end up intubated on the ventilator, which very easily could've been the case, and that is likely due to the protection offered by the Synagis shot.
Back to the appointment. He had his 2nd Synagis shot on December 2nd and was scheduled for the next one on January 6th. If you do the math on that, it's 35 days, which means he would have a window of 5 days where he would not be protected from RSV. They warned us about that on the 2nd because they only do the clinics in Newport Beach on the first Monday of the month, and January happens to have a late Monday. They said if we were worried about it, we could always go up to Orange to have it done there. So, we figured, since we were there today, and we were well within the "25-30 days since the previous shot" window, we would get it done today rather than go those 5 days without coverage. We asked the doctors about it and both agreed that it would be a smart idea to get it done today. In fact, they went on to explain that the 3rd dose provides the most benefit and if you let it wear off and wait it could make it less effective. So, they put the order in and said a nurse would come by when we were finished to give it.
After the doctors finished, a nurse did come by. She said she would be giving the Synagis shot. Yup, we know. She left to go get it and came back with some interesting news. "Actually, it doesn't look like you can get it today because your insurance hasn't approved it." I'm sorry? Actually, our insurance HAS approved it. Five doses through March, two of which we have already received. Why would they suddenly not have that approval on file? Then it was, "Oh, actually, it's because it hasn't been long enough since your last dose." Again I say, I'm sorry?? Our last dose was on December 2nd. Today is December 30th. That's 28 days, right? The window is 25-30. How are we not in the window? So she left to talk to the Synagis coordinator again, and this time she came back with this gem. "OK, you can't get the shot today because it's still December and your insurance says that you can't get the shot twice in the same calendar month. So since you had one on December 2nd, you have to wait until January to have it again." I can't even tell you the amount of red I saw. But, I will say, she was goooood. Because I believed her for a hot minute. But, insurance was going to feel my wrath and I'll be darned if we weren't going to get them to make an exception. I mean, come on. Would you rather pay for the shot a few days earlier or have my kid end up in the hospital with RSV which I ASSURE you will cost your company quite a bit more.
So we get the insurance company on the phone, they transfer us to the specialty department and we get placed on hold. I swear, hold music is my own personal torture. Now you know my weakness, please don't use it against me. Then, the music pauses and we hear, "Our operators are busy assisting other callers. If you'd like to leave a message, please press one. Otherwise, please hang on the line for the next available operator." I have never been more thrilled to NOT have to press 1 after the call earlier. But then, wouldn't you know...by no fault of my own or indication by my fingers, the music stopped again and sent me to a voice mailbox! The red I was seeing was turning maroon at this point. I left the most polite message I could muster, explaining that I did not, in fact, wish to leave a message but their system gave me no other choice, but that we were actually in the hospital that very moment and needed someone to call us right back to assist us."
We decided to make the best of that time and walk over to the main hospital where we had to visit the Heart Institute so that Ryan could get his echo and EKG done. This part is actually quite funny. We get over there and check in and they say, "OK, can you please wait in the lobby and someone will come get you right away." We waited 30 minutes so that someone could come out and call our name, have us sign TWO papers that we had already signed in the building we had just come from, which, mind you, is directly connected to this building by a parking garage. I have never seen a woman blow through that paperwork (all TWO pages) as quickly as she did, and I can only assume it had something to do with my tightly pursed lips and extremely annoyed tone as I responded to, "Has your address or insurance information changed?"
"Do you mean from the last time I checked in about two hours ago? Nope."
So we entered the hospital and made our way to the Heart Institute where we proceeded to wait. For the echo, for the EKG, and for the insurance people to call us back. In the meantime...Ryan is running low on his portable oxygen tanks and we put his last cloth diaper on him, which he promptly pooped in on our way back to the echo. Obviously when we packed his diaper bag in the morning we never could've imagined we'd still be there well past lunch time. Thank God we decided to put his blended food on ice in his little pump backpack so he could still get his gtube feeds.
At a bit after 1pm, we walked out of the building after finishing up at the Heart Institute. Our phones had not had reception in the hospital, so we tried calling insurance again one last time before going home, defeated. This time we got through to the specialty department and I explained our situation. She told me there is absolutely nothing in their approval that says anything about not having two doses in the same month. All it says is that he is approved for 5 shots between November 1st and March 31st and that they should be spaced around 4 weeks apart (same as the recommended 25-30 days). I had her fax that over to the clinic and I marched back in to the front desk and told them I needed to speak to the "Synagis Coordinator". The receptionist, bless her heart, finally got this person on the phone and then proceeded to give me the run around about why they couldn't give him the shot today. All the same reasons as before...and she threw in a few fun ones like, "It's only been 18 days since your last dose." (Fuzzy math much?) and "If you do this one now you won't get a dose in March!" Actually, that was quite funny, too. I had to explain to at least 3 different people that if we get this shot now, at the END of December, that will bump all of our future shots to the end of the month instead of the beginning. So we'll get one at the end of January and the end of February...which will last 30 days...which is WELL into MARCH!! Omg, I get angry all over again just thinking about it. And wouldn't you know, God was kind enough to make February a short month. BONUS COVERAGE!! I am making this sound much calmer than I actually was, but basically, to summarize, what I finally said was, "We are not leaving here today without my son getting that shot. Do what you need to do or tell me who else I need to talk to to make this happen sooner rather than later because he's on oxygen and we are running low."
While the receptionist was running around behind closed doors trying to quell the beast that had arisen inside me, I went outside and searched for the phone number to the hospital's customer service line. The very sweet lady who answered could immediately tell I was upset, so she actually walked over to the clinic and listened to all that you've read here, and then, like a medical Mary Poppins, she walked into that clinic and made sh*t happen. At this point, it was 2:45. We had been out of the house with Ryan, hanging around probably one of the top 5 germiest places on the planet, for 6 HOURS. I was livid. It honest to God felt like they actually WANTED him to get sick. "Here, please wait in this huge waiting room full of REALLY sick kids while we continue to feed you ridiculous nonsense about why your child can't have the shot that he is ENTITLED TO by your insurance simply because we are morons." (OK. I'm getting mean. Pretend I didn't say all of that last part. But I'm not deleting it.)
So after the customer service rep went in (this was after the receptionist had told us they were working on it and it should just be another 15-20 more minutes), she came out and told us that they were ordering the Synagis shot from the pharmacy right then, and we could go back with her to have it administered. Two very nice nurses injected the shot and we were out of there in 5 minutes. I mean, really. REALLY?!?!?!?!
I had to put this out in words because I am the type of person who likes to tell people things. If I think it will help just ONE person to NOT have to deal with this kind of crazy, then it's completely worth it. I can see the stats on this blog, and I know people are reading even though I'm not posting much. Probably because a lot of the things we talk about with Ryan are highly searchable. I know, because I was there. When he was in the NICU, I spent a ton of time googling things related to prematurity. I especially loved looking at blogs of former 25 weekers who were a little bit older, just to see what the future had in store. So, if you are reading this from my shoes almost 2 years ago, please know that some parts of this journey do get easier, but you will never have to stop being an advocate for your child. And don't ever let anyone make you feel like you don't know better simply because of their job title. YOU are the parent, and YOU know your child better than anyone.