OK. We met with the pulmonologist this afternoon. Cooper is still having rapid respirations at the level for which he was previously hospitalized - seems that if he's not sleeping, his breathing is too fast. It could be related to his reflux, or it could be another underlying chronic lung illness (maybe asthma, maybe something else). The doctor prescribed four medications - three to be used daily, the fourth as an emergency medication as needed if his current symptoms worsen.
The doctor agrees that Cooper NEEDS the RSV prevention shots (Synagis) and while we were there he dictated a letter to go to Cooper's pediatrician and GI specialist outlining why the shots should be approved for Cooper. This should hopefully help get the insurance company to cover them in the appeal process. HOWEVER, even if they decline coverage again we are going forward with the shots. My parents said they'd help us cover the costs - and we're so grateful for their help - but even if they didn't this is something we'd just have to find the money for, and we would.
While to doctor dictated the letter and used such phrases as "chronic lung illness" my mind started to wander in a panicky way, causing me to forget about all of my questions and all I could think of was to focus on the instructions for all these new medications that I'd have to give him every day. So, I have the meds all figured out, but I have no idea why I'm giving them to Cooper LOL. I don't know what his diagnosis is! ;0 We have to go back in two weeks to see how the meds are doing to clear up Cooper's cough and to normalize his breathing.
On the way from the doctor's office to the pharmacy I called the pediatrician and left a message for her to call me so I could fill her in on what I could remember - I really wish Bob could have been there because between the two of us we'd know what was going on. She called me back once we got home and she was pleased with the prescribed medications and the fact that the specialist had written that letter to help us lobby the insurance company for approval for the shots. I asked her if we could proceed with the first shot now and pay out of pocket so that we can get Cooper the protection so we can bring him back to daycare until we find an alternative care situation. She is going to call the drug company rep first thing in the morning to find out if we can do that and if so then how long would it take to get the meds to her office. She's also going to call the pulmonologist to get a run down of his findings/diagnosis/etc so that she'll have the full picture and can translate for me since I walked away a bit stunned by the whole thing. She's also going to ask him if daycare is too risky for Cooper or if it's OK once he has the shots. This will help us decide whether to stick it out with the daycare center or to give in to the cost and stress of finding home-based care for Cooper until he's a year old when we would hope that his reflux and lung issues would be outgrown/resolved and his immune system stronger. I love this pediatrician - she's so wonderful.
So, by end of day Monday we'll have all the extra paperwork in to the insurance company for the appeal process and I'm hoping that we can get Cooper's first shot done asap with or without coverage by insurance - so that he can be protected for a month while we sort all of the other details out.
Cooper is now on 4 daily medications: Prevacid, Singulair, Xopenex (nebulizer), and Pulmicort (nebulizer), and a fifth for emergency purposes which we hope to never use - Prednisolone.
He finally just fell asleep so it's time to administer a nebulizer treatment - I tried doing it while he was awake and it didn't go well so I had to stop and wait til he fell asleep.
6 comments:
Wow. Never a dull moment. Glad to hear that you have the appeals process going. I really hope insurance covers the shots for you. I still think its stupid that if you purposely put your baby at risk for lung problems by smoking they will cover it but by being responsible, you get screwed. In the mean time, I hope the meds that Cooper is now on work well for him.
Good luck with the appeals process. I'll be praying for you. And bravo for deciding to go forward with or without the insurance company's help. I hope the meds help. I pray you can get some sleep. Give Cooper a squeeze from me - I miss you!
Totally not a dr or anything - but singular is an asthma med. (I was on it at one point). Have you also considered finding out who the manufaturer of the med is and seeing if they have a program to help you cover the cost? (you know like most adds on TV these days for perscription drugs ;) ) Just a thought :) Hope you get some real answers from those insurance dolts soon!
(ps just had to add... I looked at the word verfication and started laughing..."droolus"... um that would be any of the 3 musketeers I believe... Jr's teething, Coops teething and I think Emmett's teething too!)
A kid with these issues needs to avoid daycare! I know it's tough for you, but it's a necessity for your baby right now! For his sake, make it happen!!! praying for ya
Hey now don't you lump my 3M in with your 3M's! We are not teething here yet. His toothless "biting" is painful enough thank you very much!
Oh and Anonymous, in a perfect world she wouldn't put him day care. (I believe she has said this before.) Unfortunately, we do not live in a perfect world. She and Bob are doing everything within their power for Cooper. So please keep all snide, catty and generally icky comments, including those poorly disguised as "helpful", to yourself. Julie has enough stress right now without judgement from others. Thank you from the bottom of my heart.
Love ya, Julie! *muah*
I hope the appeals process goes well and I'm glad you are going this route. It seems these insurance companies think very few people will pursue denied coverage--ha,ha on them as they are obviously messing with the wrong momma this time! Thank goodness you're so organized, too, now that there are three (potentially four) new meds. Cooper is TOO CUTE in the new photo! In Jonathan's sonograms, he always looked like he was moving like a boxer. And then with my IC, he had to be a strong fighter, so we used to call him Boxer Boy while I was preggo. Cooper has taken it to the next level!
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