This coming weekend Abby’s parents will come visit, and on the walk over to the hospital this morning, she told me that her dad would probably have lots of questions to ask us about this murky insurance nightmare that we keep alluding to.
And approximately two hours later, I get an email from her dad which proved there is indeed a psychic link:
You realize we are both nervous about your insurance situation, but we also know that you know what you are doing and we trust your judgment.
Well, I’m sure it’s not the first time I’ve made the in-laws nervous. But it’s not my intention to leave any of James’s vast fan club in the dark in terms of what the plan is for his insurance. It’s a little bit long-winded, and maybe less about how James’s progress than most of our typical posts, so I’ll try to randomly insert some pictures of James every few paragraphs so all the sweetbabyjames.info purists will have something to enjoy.
I should start by saying there is another major storyline in our lives that we’ve not been talking much about here on this blog, and that is my career change. A year and a half ago, before James was conceived, I realized after a string of unsatisfying software development jobs that my passion was not in software, and I took inventory of my skills and interests and tried to figure out what I was meant to do. I’ve long had an interest in investing and tax preparation and retirement planning, and it seemed a good fit to transition into financial planning, which also encompasses estate planning and insurance planning.
So I began to take some courses at UCF preparing me for a designation called the CFP or CERTIFIED FINANCIAL PLANNER. The endpoint of these courses was that 2-day, 10-hour national exam which I took in July. It’s a strictly pass-fail result, and something like 58% of people who take it pass. Results are not officially known, yet, but I have little doubt. The different classes that I took were a great boost of confidence for me, showing me that indeed this will be a great career fit.
At the end of July, Abby was officially on leave with the school system, meaning that we were left paying the premiums on her group insurance, $887 a month for her and James (remarkable that the school system with all its employees couldn’t get a better group rate). I had group insurance from my job, but I was actively looking for a job to start my new career in. And it seemed at one point that a requirement of the new job, for James’s sake, would be some kind of group insurance I could put the whole family on. (The big difference between “group” insurance and individual health insurance is the lack of underwriting and coverage of pre-existing conditions provided continuous coverage. James obviously has an abundance of pre-existing conditions, and will never be insurable with an individual policy.) Financial planners who work as registered investment advisors (as opposed to brokers or agents… another long tangent) are often independent and therefore have no access to affordable group insurance. Abby was hoping not to immediately go back to work. This was the predicament we were facing a couple months ago.
Finally, after lots of research, I discovered that a state program called KidCare provides insurance for children age 1-5 (MediKids) and 6-18 (Healthy Kids) in situations where they are uninsured and their parents can’t provide them insurance through their jobs. Actually, the parents after qualifying for this can get jobs which provide insurance and the kids can stay enrolled. Not only are the copays extremely cheap, but these programs have excellent benefits and are blind to pre-existing conditions. They even provide proof of coverage in the case that James might move from one of these state programs eventually back into some group plan. And even though these programs have income restrictions, there is now a way that people earning more than the eligible income level can buy into the program for a very affordable $160/month per child. Considering the amount of coverage, this is an amazing deal for James.
Well, the catch is that the applicant kid has to be at least one year old, and uninsured. James has a little less than 8 months to go, and it is a scary proposition to remove him from insurance even for a day considering how fragile his endocrine system is alone. My thought was initially that James could be on COBRA and still get into MediKids when he turned one, but after a bit of digging, this seemed not to be the case.
The only way it seems possible to get into MediKids without a gap in insurance is to keep James under Medicaid until he’s one. He’s actually on Medicaid right now through Social Security SSI, which apparently he was qualified to receive because he’s institutionalized. What we’re told will happen when he finally gets discharged is that Social Security will drop him off of Medicaid. However, there is a way back into Medicaid through KidCare, the same state office that administers the MediKids and HealthyKids program. The eligibility for Medicaid through KidCare limits family income to 200% of the federal poverty level.
Okay, so switching gears back to my career change… just as I’m finding out about KidCare and realizing it looks like James’s best health care option for us not to have group insurance, Raymond Johnson, my good friend from church and mentor in the financial planning industry, offers me a job! We’ll initially be working from his home office, and I’ll be setting up a network for him that we can both use remotely. I’ve negotiated a plan with Raymond that will keep me just dirt-poor enough to qualify James for Medicaid for the next eight months. Tomorrow, August 31, is my last day as a programmer. Tuesday I will be a financial planner.
The plan for Abby’s and my health insurance involves one of these high-deductable health plans (HDHPs) with a Health Savings Plan (HSA), which are becoming more and more popular as traditional insurance prices are getting out of hand and fewer employers are offering insurance. It’s basically a lot like being uninsured (risk retention), but there 100% coverage after a large deductable for catastrophic events. But it also provides a means to save up funds tax-deferred in the HSA, which can then be withdrawn tax-free for medical purposes. I shopped around and found a very affordable policy with Humana.
The most recent Money magazine had a case study where a couple were small business owners and one of their daughters had a degenerative eye disease. The planner’s ultimate recommendation was to outfit the parents in a high-deductable plan with Humana and get their child into their state’s SCHIP program (which is what MediKids is in Florida) for her special needs. I laughed at how I ended up with the exact same plan, and took it as a confirmation that I’m moving into a career that my mind is built for.
The latest chapter of this insurance drama is that during the underwriting process with Humana, our medical history revealed that we had infertility treatment (IUI) last year. We thought the fact that insurance never paid a dime for testing or treatment was the extent of the injustice, but last week we learned, at least as far as Humana is concerned, that infertility treatments open a three year window where both Abby and I are considered uninsurable by their underwriting rules.
Before sweetbabyjames.info, there was hopeforthechildproof.net, and it was a chronicle of a dark, dark journey with infertility. For the unacquainted, I cannot adequately describe the depression and emptiness of that season. Compounded with that was constant rejection from the insurance industry. Wounds which we thought had mostly healed were opened again.
We’re trying again to get health insurance, this time with United Healthcare. Even though they’re more expensive, we’re told their underwriters are not quite as evil, as far as infertility is concerned, but we nonetheless had to disclose everything about our medical history, including the fact we were declined coverage from Humana. We’re still waiting to hear back from their underwriters, which may take another week.
Meanwhile, Abby has also resigned from her leave effective tomorrow, so she can stop paying the outrageous health insurance premiums. James can stay on COBRA until he’s out of the hospital; Abby and I will each have a 60-day window to elect COBRA, which we hope not to do if nothing horrible happens to us in the meantime and we can get the policy with United Healthcare.
And that is the plan, at least as far as I understand it today. I don’t know if all of you followed it completely, but I’m pretty sure my father in law did, for the most part, and he’s probably got some follow up questions.Our Journey, Our Journey (chronological) | Comments (5)
James got the go-ahead to eat, by mouth or tube, Monday at 10 am. The amount started at 6 mL (he used to eat 55 mL), and though the occupational therapist tried to stretch it out in three shifts, he was mad when the milk ended so soon. She set the bottle down and he looked at it and cried; she moved it over to the side and he turned and looked at it again. The plan was to increase it 3 mL per feed.
At 5 pm his IV went bad, the fifth one he’s gotten since he went for surgery Friday. They tried to put in another one since he was only eating 12 mL a feed by then, not enough for all his fluid needs. After trying several times, James was really upset, so one nurse suggested they forget the IV and just allow James to eat more. That was agreeable to everyone, so his feeds ramped up to 25 mL then and increased by 10 each feed after.
Today we were moved back to Pod 3. James has had a nice day, resting better now that he is on a feeding cycle again. He is getting lots of holding now that he’s relatively cordless again, although I am still a little bit sick.
Today the surgeons took off his dressing and the nurse made a “bridge” with tape to avoid any pulling on his g-tube.
The g-tube has been helpful with letting his stomach gas out, because he doesn’t burp very much now. He has done a little bit of retching (dry heaves), and cries sometimes when he is trying to poop. I am hopeful that most of these symptoms are a result of his digestion getting started again after being on IV fluids a few days. Hopefully the rest, like not burping so much, we can get used to and use the g-tube to help.
James did a little PR gig for the hospital today. Dr. Albertini was being shadowed by a top exec from Children’s Miracle Network, so she introduced him to some of her babies. Even though he was sleepy, James was well-behaved. Hopefully he gets the hospital some more money. I don’t think he gets a contract out of it, though.Our Journey, Our Journey (chronological) | Comments (4)
Saturday night James was puffy from the fluids, but his drainage from his g-tube showed that his stomach was healing and getting ready for food again. His blood sugar has been high all weekend, with only one reading below 300.
He was uncomfortable at times with the breathing tube, so Sunday morning when it became loose and the nurses were about to tape it on more securely, he saw his chance. James coughed it out in a fit of anger and hasn’t needed it since.
He still has bouts of anger when he holds his breath, stiffens out and turns blue, so to keep this from happening the nurses are giving him Versed to help him relax. He is not in much pain. The Versed makes him sort of spacey and quiet.
He seems to be reacting more to the change in environment than I remember before. The nurses said he startled at the sounds of alarms going off nearby (common in pod 1), and he is also probably going through withdrawal from not being held as much, as well as not getting to eat. One of the nurses cuddled him some for me since I have been sick.
James is hungry, so we have been wondering when he can eat. Yesterday Dr. Albertini said that in most cases of a Nissen/g-tube, the patients don’t eat by mouth for months afterwards, because they had an oral aversion or weren’t used to it beforehand because of aspiration problems. She said James wasn’t that type of patient, but it could be a week or so before he could bottle feed.
Today Dr. Morgan, the surgeon, came through and said James can be fed tomorrow through his g-tube and probably by mouth at that time as well. We were hoping he could start eating today, but we are glad he will be able to eat by bottle sooner.
Sorry all you weight-watchers, James hasn’t been weighed since the surgery. Dr. Albertini said she was hoping that if he did well eating and growing this week and next that he might be able to go home after that.
Thanks for all the prayers and encouraging emails! Our prayer for tomorrow is that James will be able to eat and burp well and not have problems throwing up or retching, as some do after a Nissen.Our Journey, Our Journey (chronological) | Comments (5)
Last night James went NPO (stopped feeds) at 2 am and got his IV put in his hand. His doses of hydrocortisone were tripled for the stress of surgery, and his insulin was put on hold with his sugars in the 300s. We waited until 12:30 to get called to surgery. It was finished about 2:10.
Dr. Morgan said the surgery went well, although James was still difficult to get the breathing tube into because of his mouth/throat anatomy and his little tongue trick. The bandage over his incision is about 3 inches long (up and down his belly) for the Nissen, and there is a square of gauze around the g-tube as well. They gave him a whole unit of insulin in the operating room, which is more than usual, so we are waiting to see how that affects him. They also put in a second IV line in his foot. He should be able to eat in 3-4 days.
He was already coming out of the morphine enough to cough a little, so the doctor on call considered taking out his breathing tube but instead decided to step up his morphine so he would rest. A few minutes later he coughed his tube out of place. The respiratory therapists were right there to take it out and give him oxygen and see if he was ready to breathe on his own. He breathed some, but not enough, so the doc put the tube back in. They X-rayed it to make sure it was placed correctly. Now he is resting more comfortably, sucking on his breathing tube.
We are very thankful for how well things are going so far with James, medically speaking. John will post soon about the struggles we are continuing to have with insurance.
This morning the chaplain told me the hospital staff is discussing whether they might allow us, the parents, to unplug James from the monitor from time to time and carry him around a little within the hospital. He is a special case because he is so old for the NICU yet not on any breathing machines (normally). I don’t know what they will decide, but it was nice that they were thinking of James and how to better serve and stimulate his development.
On Sunday he will be four months old, or three months if you adjust for his premature arrival.Our Journey, Our Journey (chronological) | Comments (3)
James’s surgery (the Nissen and g-tube) are scheduled for Friday at 11 am. He still has not vomited since last Thursday morning. I have been enjoying his happy, alert times now before all the extra cords and drugs begin. He still has not vomited since last Thursday, and he is gaining weight now, up to 5 lbs. 6 oz.
He was very awake yesterday and full of smiles and patience. He got his physical therapy exercises, and the PT said his head control has improved!
James loves to look at everyone who walks by, and if they come in to visit he studies their faces carefully. Sometimes he bestows a smile. Today we had a time of kisses and smiles like we did on day 99. He is smiling more every day, and he is also starting to giggle and coo a little bit.
Today Tiger Woods and his baby toured the NICU. James was too interested in playing with a nurse’s name badge to take any notice. He has started to reach out and touch things purposefully in the last couple days (besides grabbing his bottle and ramming it in his mouth, which he has done for weeks). Earlier today he was examining his hand, so maybe he is on the way to discovering them. He sticks them in his mouth more than he used to.
He is eating well, now 25 mL from the bottle and 30 through the tube, and today the occupational therapist said his bottle sucking is back to his former speed and ability that he had about a month ago!
Tonight he will get an IV put in and his last meal eaten by 2 am. His surgery is supposed to take 2 hours, and he will be back in Pod 1 afterwards.
Our Journey, Our Journey (chronological) | Comments (8)