Care4Conway: Improving

Wednesday, November 7, 2007

Improving

Connie's cold seems to be improving tremendously. He still has a lot of junk but the bulb syringe and vaporizer are a big help. Last night he slept from 7:30-11. Got a diaper change and slept until almost 2. Had a small vomit and fell back to sleep until almost 5. Got another clean diaper and slept until 7. It was great.

We're waiting on the RSV vaccine for this month. The shot is supposed to protect against it for 28-33 days and so should be given every 28 days. He hasn't had a shot for 34 days and is now unprotected. All because insurance is dragging their feet on coverage. It is such an expensive shot they won't even ship it to the home health company until they approve it. I asked about paying it out of pocket and getting reimbursed later and our nurse said it isn't possible. I asked her what this means for him and she just said strongly to NOT TAKE HIM ANYWHERE. We don't have big plans on shopping or other outings and haven't since we've been home, but he does have two appointments at the end of this week where he'll be exposed in doctors' offices to whatever else is there. One of them is at St. John's and that means walking through part of the hospital to get there. Yikes! Isn't that frustrating? I mean, they covered it last month, why aren't they covering it this month? They did the same thing with the drug Prevacid. He got a scrip for it last month and they filled/approved it and now they won't approve the refill. Ridiculous. The home health nurse suggested calling insurance myself which I've attempted before and had no luck. You sit on the phone for over an hour without ever getting to a real person and there is no menu shortcut to actually get a person. I've emailed questions via their website which have gone unanswered. Ever since Anthem took over for Blue Cross/Blue Shield it has been this way.

4 comments:

Anonymous said...: Erin,
The latest video was great! Loved seeing the smiles :) Glad to hear his cold is improving, mine seems to be hanging on. I'm sorry to hear that insurance is being such a pain, we'll all keep our fingers crossed that they get their acts together and realize the necessity of his shots and meds. I'm sure it is super frustrating for you. Nothing worse than dealing with bureaucratic red tape of insurance when the health of your child is on the line. Hopefully it will all come together before you head in for the appointments at the end of the week.

Smiles and hugs from Omaha, Caryn; November 7, 2007 at 7:45 AM
Anonymous said...: Hi Erin and Greg
Since Paul works at a place that does voice mail systems he knows some tricks to get through the voice mail web. Try this...
Listen first to all the options of what to press. If they leave out a number, press that one. You might even try to hold the button down for several seconds. Usually that button is zero. Just press and hold for a few seconds to see if it works. Who knows?? May be worth trying. It could also be the # or * button.
Love from the SC Beckemeiers; November 7, 2007 at 8:36 AM
Anonymous said...: Erin,

When Evelyn her Double Switch, we also had BCBS. About a month or two prior to the surgery we got a call from BCBS from someone introducing themselves as our "special caseworker". Basically they knew something big was about to happen and that sooner or later we would run into some insurance issues. This person gave us their name and a direct dial number and said that she was there to help with any red tape that we may receive. Fortunately we didn't really run into many issues (other than Synagis) so we never called back but maybe you can somehow get someone like this assigned to you. Things may be different within our plans at BCBS as I work for a company that is their largest and best paying customer in the state......

Regarding Synagis, BCBS approved us for the whole winter season (both last year and now this year). Both years they sent a letter saying that we would be approved for X number of injections between these two dates (Nov 1 and April 1 I believe). Maybe your doctor can request something differnt in order to get you pre-approved.

Also, it is every bit as expensive as what they say so I would strongly try and not get yourself in a situation where you could get stuck with a bill. Before BCBS reduces the amount I think full price is a couple of thousand dollars per injection......Our peditrician dispensed it last year and it almost bankrupted her. We have to go to the hospital this year.....

Hope Conway kicks his cold soon. We have the same mess here in TN.

Dave Knostman; November 7, 2007 at 11:15 AM
Anonymous said...: Dear baby Conway hope you get better really soon!

love,

Max; November 7, 2007 at 5:04 PM

Conway's Heart Story

Conway's Heart Story

Conway David Beckemeier was born on March 3, 2007. His heart defects went undetected during pregnancy and he was diagnosed at two days of age with L-TGA, a large VSD, sub pulmonic stenosis and Ebstein’s Anomaly. Just before turning six months of age, he underwent open heart surgery to reroute the bloodflow in his heart. Called the "double switch", this procedure is the most technically challenging for pediatric cardio-thoracic surgeons to perform. The version of the double switch that Conway received on 8/28/07 was called the Rastelli-Senning with VSD closure and sub pulmonic resection. He suffered a grand mal seizure following the surgery that lasted over an hour and had several other post-op setbacks including surgical heart block, which required another operation on 9/18/07 to insert a pacemaker. Following surgery and such a long hospital stay, Conway developed an oral aversion (he would not eat) and he was 100% NG tube fed for eight months. He also lost muscle tone and required both physical and occupational therapies. In April 2008, he had a cardiac cath and attempted balloon angioplasty on his pulmonary arteries that did not work. Although his recovery was very long, he had a solid year or so of being a "normal" kid . Then in May of 2009, it was discovered that Conway was having rhythm disturbances, specifically atrial flutter. His pacemaker allowed it to go undetected for several weeks until he showed signs of heart failure and was admitted to the ICU for a week to be placed on IV heart meds and undergo cardioversion on 5/6/09. He went home and his heart function started recovering when he had another episode of flutter (6/16/09). This time, he was again hospitalized and put on IV milrinone, but he converted back to normal sinus rhythm by himself. At that time he was placed on the anti-arrhythmia drug, amiodarone. On 7/22/09 he had to be cardioverted again for yet another episode of flutter. The following week, he got worse instead of better. His cardiologist did a full work up and it was determined that his aortic, mitral and tricuspid valves were all leaking worse and were felt to be the cause of his heart failure. On 8/24/09 he had a cardiac cath and attempted ablation. The electrophysiologist was unable to induce a single arrhythmia. Then, just two days later, he went into atrial flutter on his own. He was placed back in the cath lab where he underwent mapping and a total of 17 burns were made to try to knock out his arrhythmias for good. The next day, 8/27/09, he had his second open heart surgery to repair his mitral valve called ring annuloplasty. He also had a partial Maze procedure done. His surgeries are performed at C.S. Mott Children’s Hospital at the University of Michigan (Ann Arbor). This time he was discharged just six days later! His Left Ventricular function improved drastically. In December 2010 we noticed he began getting more winded during physical activity. A January 2011 cath showed that he is outgrowing his RV-PA gortex conduit, but he was not symptomatic enough to warrant intervention. In April 2012 Conway’s fatigue increased and an echo at the end of May revealed that the ratio between the right and left sided pressures has gotten too high and it is time to replace the homograft that was placed when he was five months old. He had a cardiac cath on 5/25/12 which confirmed the echo findings. He had surgery on 8/8/12 to replace his pulmonary valve and RV-PA conduit, add an additional pacing wire to his left ventricle, and change his generator to a bi-ventricular model which is shown to preserve function and help the heart muscle pump more efficiently/effectively.