Holy financial problems

Well, my stress about affording HLHS has kicked in for sure. I just don't know what we are going to do. At this point, we have about $16k due out of pocket. Rough estimate, that $16k is due to about 15 different companies. That's 15 monthly payments. I have set up two payment plans thus far, and those two payments alone are $260 a month combined. There is no way we can pay 15 of those. I would say we are spending about $250 a month on current medical costs. That's for meds, co-pays, etc. So even if I only paid $50 a month towards these medical bills, that puts us at $1000 a month on medical costs. Let's also throw in there that I am no longer working, so our income has literally been cut in half. We were living within our means before, but didn't have much money left over, and do have debts of our own. So, in theory, our bills have gone up $1,000 a month(with the $50 payments idea) and our income has been cut in half. We have the money Wyatt received in donations, and use it to help cover his current medical costs, but it is no where near the amount owed in bills. I am not sure of it makes more sense to pay off any bills we can with it, or use it to make payments to keep things afloat longer.

Ultimately, we know that a bankruptcy is in our future. We just don't make the kind of money we need to pay these bills. But, without Medicaid, it's only going to get worse. We're facing another $10k in medical bills here in just a couple of months. I have NO idea how we will swing monthly payments once that has all kicked in too. Not to mention it costs quite a bit of money to hire a bankruptcy attorney, which we would also have to be saving up for, somehow.

Financially, this entire situation is a nightmare. I am the kind of person that always pays her bills, on time, no matter what. I've never been in a situation where I can't afford life. I am so grateful for the help we have received and are still receiving, but still don't know what the hell we are going to do.

Of course, Wyatt's life is worth all the money in the world to us, and in the end, that is what important. Unfortunately, these companies will not accept my love for Wyatt as payment.

Supporting Wyatt

I just wanted to share with you all that I got a tattoo to honor Wyatt, about a week ago. I am hoping that it will help to make him feel less "different" when he is older, and I think it honors the journey we are taking. I absolutely love it, and couldn't have asked for it to turn out better. And it makes me feel like we can do this, we can conquer anything. It makes me feel strong for Wyatt. :)

Cardiology follow up- 2 months old

Yesterday I took Wyatt to his cardiologist for his first echo since he was discharged from the hospital. I was very nervous, to say the least. Thankfully, his heart still looks good. He has a small amount of narrowing in his aortic arch, but it isn't a concern at this point, and they're just going to watch it. His blood pressure is a little elevated, but he is on a decent dose of Enalapril, and they are just going to keep an eye on that as well. His cardiologist was super happy with Wyatt's weight gain (9.5 pounds now!) and said it made his day to see Wyatt doing so well. :) we go back for another echo on December 19th, and at that time we will schedule Wyatt's heart cath. That, we expect, will be an overnight stay in the hospital. And we are anticipating his Glenn in late January to mid February. The Glenn is a huge step in the right direction, but I am so scared to go back down the surgery road. To sign my baby over again. I am not looking forward to it. At all.

We are still trying to deal with all the incoming medical bills, making payment arrangements as we can, while keeping our other bills paid and providing some sort of Christmas for the boys. We are keeping Christmas small this year, as we need money for other things. I am glad we will all be together at home for Christmas, though. That's the greatest gift of all.

I've also been dealing with some very difficult things in my personal life here lately. Things I never imagined having to deal with, especially while trying to get through all of Wyatt's medical needs. It has been extremely painful and confusing, and I've just been trying my best to get everything sorted out, for the boys sake, and for mine. So those of you who are thinking good thoughts and praying for us, please pray I find the guidance I need, as well as the strength, to get through this unexpected nightmare.

Day to day life for Wyatt is going well. He's a pretty happy guy, smiling daily. He even took a bath this morning without screaming! Must have been my mommy touch! ;) I'm pretty well adjusted to life as a stay at home mom now, and enjoy it for the most part. It's a bummer that we never get to leave the house, aside from doctors appointments, but it's what we've got to do to protect Wyatt and help keep him healthy. Austyn is doing well, and seems to have adjusted to Wyatt being home. I hate that he will have to endure another surgery and hospital stay with us, but again, it's what we have to do. I'm thankful that he's a sweet, loving boy, and that he's so strong. DJ is back to work and back into the swing of things.

A huge thanks to all of you, for following Wyatt's story and supporting him! I am happy that I haven't had much to report here lately- no news is good news!

A whole lotta catching up to do

First of all, I am SO sorry it has taken me this long to update the blog! 

We have been home for 20 days now. It has been wonderful being in our own home, sleeping in our own bed, being with Austyn every night, and being together every night. DJ has returned to work and is back into things full swing. I am adjusting to life as a stay at home mom, but things are going well. I can't complain about wearing pajamas all day long :) Ha! I would get dressed, but we don't leave the house ever. I promise, I put real people clothes on for doctor's appointments and things ;)

We are battling the acid reflux on a day to day basis. Some days are good; some are not. Yesterday wasn't too great, but today has been good thus far. Knock on wood. The Prevacid does seem to be doing its job, thankfully, and I think we just need to be super careful about making sure we try to burp Wyatt after every 30-40 mL's, so we don't shock his poor tummy. The Similac Sensitive for spit up seems to be doing the trick as far as formula goes. I am now taking Reglan ::runs off to take the dose I should have taken 2 hours ago:: to see if it will boost my sub-par milk supply. Trying to pump every 3 hours when you are taking care of a baby with acid reflux and you are sleep deprived is not an ideal situation, so I could definitely be pumping more frequently, but the logistics just don't work out. But, Wyatt is still getting breastmilk and all those antibodies, so that's good. He is continuing to gain weight well, weighing 8 pounds, 10 ounces this morning. I am SO thankful we are doing well enough eating by mouth and he didn't have to come home with an NG tube or a G tube.

He has to take Synagis through flu season, so his body could fight off RSV if he were to contract it. Getting that all figured out was a fiasco. I think it is finally done though, thankfully, and he will get his first shot on the 21st. With our insurance (UMR - for anyone wanting to compare), we have a $150 copay per vial of Synagis. At his current weight, he only needs on vial per month, but may require 2 vials as he gets heavier. Thankfully, our pediatrician's office gave me the phone number to a company who helps cover that cost, and we only have to pay $50 per vial. That is SUPER helpful. The office also gave us a ton of formula samples today, which will save us from having to buy that for a while. 

Wyatt is wearing a Pavlik harness for hip displasia due to his breech positioning, so we see a Orthopedic doctor about every 10 days for that. He doesn't seem to mind the harness as much as DJ and I do. It makes it much more difficult to change his diapers, put him in the car seat, and snuggle him :( I am hoping he won't have to wear the harness for a very long time. We see them again in a week, and it will have been almost 3 weeks of the harness by then. They are doing an ultrasound of his hip at that appointment, so we will see what sort of progress has been made.

I think life has become pretty routine for me at this point. Monday through Friday I get up in the morning (much earlier than I would like, as I am generally up with Wyatt from 1-3 or 2-4 am), get Austyn fed and ready for school, feed Wyatt, and get Austyn off to school. Then its just me and Wyatt all day, cuddling, feeding, diapers, checking pulse ox, recording pulse ox and feed information, taking weights, etc. I get things done around the house as I can. The acid reflux makes Wyatt very needy, wanting to be held all the time, and I oblige him. I figure he deserves it to the fullest. DJ comes home after work, and I get a bit of a break from Wyatt, while I get dinner cooked and ready, and we eat, do homework and bath time, play, etc. before its bed time.

While I am not happy that Wyatt has to have this heart defect, and our family has to endure this, I cannot say that I am unhappy on a daily basis. Thankfully.

When I was pregnant with Wyatt, I wanted information on the costs associated with HLHS. I couldn't find much. It seems no one wants to talk about it. And while I wholeheartedly understand, and agree, that your child's life is worth any amount of money, paying the bills is still a part of this situation, whether you like it or not. So, since I couldn't find the information I wanted, I have been compiling it, in hopes of providing it to another family someday.

The bills from the hospital have started to roll in. For me, my 4 day hospital stay was about $28,000 before insurance covered their portion. We owe $3000 or so out of pocket. I called to set up a payment plan, and we have to pay $184 a month for that bill. That was the lowest they would go. My OB's charge for delivery was $12,000 or so, us owing $3,200 out of pocket. I haven't gotten the bill for that yet, just the explanation of benefits, but I imagine the payment plan will probably be about the same. My spinal block was about $2000 before insurance, and we owe $250 or so on that, out of pocket. There were some smaller bills for labs, etc. for me as well. $20 here and there. Thus far, for my stay, $44,446 was billed to insurance, and our out of pocket cost is $6,882.

For Wyatt....its a whole lot scarier. We still have not seen the explanation of benefits for his hospital stay, or his surgery. But, even without those, $82,111 has been billed to insurance, and our out of pocket cost is $4545. The intensivists ranged from $600 - $15,000. The anesthesia for his surgery was over $8000, and we owe just over $4000 out of pocket on that one. A lot of our out of pocket costs haven't been calculated yet, because my insurance was waiting to hear from UMR to see what they were going to cover. My insurance (Cigna) is acting as primary for his hospital stay, so things are being re-processed. I am keeping track of each and every statement, explanation of benefits, bill, etc. that we get, to make sure things are covered correctly and billed correctly. I had to call the hospital because over $1000 was billed with my name listed as the patient rather than Wyatt's. Wyatt has a $3,000 deductible, which has been met, and a $6,000 out of pocket maximum, so in theory, the out of pocket cost for his stay shouldn't exceed $9,000. We will see how that goes. Then, of course, we get to meet it all again for his Glenn procedure.

Now, I do have this information on the cost of things, but don't ask me how to afford it. We received many generous donations from family, friends, and strangers, but even with those, there is no way we can pay upwards of $18,000 in medical bills and keep a roof over our heads and food in the fridge. I guess my plan is just to set up payment plans for everything, and cross my fingers we will be able to swing those until everything is paid off. Of course, this won't work, as the payment plan for my hospital stay is for 18 months, and we have another surgery and hospital stay before these will even be close to paid off. But, what else are we going to do? I assume a bankruptcy is in our future, I just don't know when yet.

And as I am now typing one handed due to Wyatt's need for snuggles, I will update again later. Hopefully I will get around to it sooner next time! ;)