Laughing, Weeping, Living

Life happens. You laugh about it or cry about it, sometimes both.

So Far So Good…

Today Agnes moved off the ventilator and off the CPAP and is now breathing totally on her own! Yay! She is getting oxygen just like she did at home, with a mist collar just like at home. She is now back to her “baseline” which is an extremely relief. She does get an inhaled bronchodilator medicine which she did not have before, but other than that her medicines are the same, too. I am so proud of her!

The results of the echocardiogram show that Agnes’ pulmonary hypertension is no worse than it was before, and since she appears to not need ventilator support, the doctors have decided to not use the experimental medicine. That’s fine, I guess, but I am worried what Agnes will do when she gets mad and starts to desat like before. She didn’t really while I was there today, but the nurses did nothing more than diaper changes. I’ll be interested to hear how she does with a bath and trach care and whatever else they try tonight. If Agnes desats a lot, they may put her back on the CPAP with or without pressure support, I don’t know. I seem to have misunderstood the debate about the pulmonary hypertension medicine. I thought that if the echo didn’t look better, they would consider the medicine. I thought it was maybe about the medicine or continued vent support. But what it now looks like is, the echo looks no worse, and Agnes is currently doing fine without the vent, so no medicine. It’s about Agnes needing no help versus needing the medicine and¬†continued vent support.

So, we’ll see what happens in the next 24 hours. If Agnes keeps doing fine, she will move out of the PICU and back up to the floor, and she will be discharged at some point from the floor. If she keeps doing fine for the next day or two, I’m certain they will let us come home very soon since we won’t have to learn to use a ventilator and do a 24-hour care test. Agnes does need to get her feeds back to bolus rather than a continuous drip; that will take a day, maybe two days. And we will have to wait for the at-home nursing to get sorted, though hopefully we can have our previous nurses back. Agnes was approved for up to 12 hours of nursing a day, which will be a huge help! Thank you, Medicaid home care waiver! But other than the nursing, I don’t think we will have to wait for anything else before we come home.

Dare I look at the light at the end of the tunnel? Yes! I’m looking at it!

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7 Quick Takes: October 18

Linking up with Jen at Conversion Diary. Like every Friday.

1. Stephen is on a dinner-time hunger strike where he won’t eat the meal I serve. Then he won’t eat the other meal I serve him, trying to get him to eat. Then he won’t eat the meal I serve him again because I wrapped up the plate and put it in the fridge. All he wants is “cheeros” and nothing else will do. It’s frustrating, especially when others in the house opt for “cheeros” for their own dinner on leftover night. How will I ever get Stephen to eat the dinner I prepare for him if other people get to eat breakfast cereal for dinner? It’s a struggle. I’m hoping it’s a phase for Stephen. He used to be such a good eater…he ate anything I put down for him. Except kale. He’s never been a fan of kale. I try to model good eating habits and a variety of foods for him, but he does not look only to me to learn behaviors. There are three other adults in the house he observes as well.

2. We’ve had some response to our support page for Agnes. There have been a lot of people looking at the page, and so far 6 donations. We are almost 4 percent to our goal! We are so thankful and appreciative for those who have offered a gift to help us take care of Agnes and all her needs.

3. I want to start a small cookie baking project to help support my family. I will probably start an Etsy page since this looks like the easiest and most legitimate way to sell homemade goods on a small scale. I have one major question about this venture, though: how do I ship the goods? Should I freeze the cookies and ship them frozen so they arrive frozen? Should I ship them fresh with ample padding? Should I freeze them and ship them frozen so they arrive thawed? I do not know. I fear I may have to purchase some cookies from a number of Etsy vendors in the name of Research. Yes.

4. Agnes continues to be stable. They turned down the rate of the ventilator from 20 to 15 and she apparently did not notice, which is good. The plan is to reduce the rate by five each day, until all Agnes has is CPAP with pressure support, then take away the pressure support and leave Agnes with CPAP, then take away the CPAP. We’ll see how it goes.

5. I’ve been hearing a number of negative comments about people who rely on government assistance programs like EBT and Medicaid. I would just like to remind everyone that while there are of course many who abuse these programs, there are also many who genuinely need the support to make ends meet. I myself use EBT and I am so grateful. If I did not have EBT, we would spend half our monthly income on food, easily, which does not leave much left over for gasoline, bills, incidental expenses, clothing, church donations, and “emergency.” Because, you know if you only have $600 to divvy up after food, there are going to be emergencies. That’s the rules. Anyway, things like this are mildly offensive to me, and also pathetically funny that there are people who believe this kind of stuff, which it is becoming more and more clear to me: there are. lots. If such a thing can be judged by quantifying the related Facebook memes.

And my family is on Medicaid. Oh my gosh, if we did not have this, we would probably spend 1000% (one thousand percent) or more of our monthly income on medical bills.

6. It’s starting to look and feel like Fall around here! The leaves are turning colors, it’s been chilly and crisp. I love it. The heat has been on in the house, and I’ve had to wipe off the windshield in the morning.

7. I’ve got a cough that just won’t quit, and I wasn’t too worried because I have no other symptoms besides a cough that is sometimes dry, sometimes productive. Except now I’ve had it for more than a week, and the coughs really take a lot out of me. I hope I’m not infectious because my daughter has Chronic Respiratory Failure…And I don’t want to go to the doctor because I’m not sure my Medicaid is working right now since Agnes just got transferred off the MCO and back to straight Medicaid, and apparently county employees are so overworked that they accidentally transfer around whole families when one member moves, even though it seems like it would be more work to transfer multiple people…whatever. I have a dreaded phone call to make, I can see. And I’m not encouraged because apparently this happens all the time, and some ladies I’ve talked to have trouble convincing the office that the problem even exists. Sigh. Wish me luck.

Read more takes at Jen’s blog.

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Recap The Awful Year

Okay, I’m only going to do this once and get it off my chest. But geez louise could something good happen around here? We are due for something positive without even the slightest hint of double-edged swordiness.

Thank you, facebook.

I am going to recap this past year, and I’ll be totally honest with all y’all, it’s going to be a bit of a pity party. I know the people who are in my life already know the extent to which this year has totally sucked ass monkeys, but I’m hoping this exercise will be cathartic and help me to move forward.

May 2012: Our “year” started more than a year ago. We found out we were expecting a baby! A week after that news, we found out Jeremy’s job was being eliminated and we would have to leave Billings, MT. At least his boss gave him plenty of head’s up.

June 2012: Our baby miscarried. We named him Joseph Mary. The worst part was we had just made the Big Announcement that we were expecting so we had to be all like “just kidding.” It was bad.

July 2012: Despite numerous resumes sent all over the nation, no job offers yet. Around this time I started a good habit of walking approximately 2 miles every morning around the scenic neighborhoods of Billings, with Stephen tagging along in the stroller. That was nice.

August 2012: We sold our better car to help finance our upcoming move to a Place that was Yet to be Revealed to us.

September 2012: We put our perfect house on the market and moved away from Billings to Rio Rancho, NM for the sole reason that Rio Rancho was the only place to offer Jeremy a job. I wouldn’t recommend that strategy to anyone. Also in September we found out we were expecting a baby! Because of this, it becomes impossible for me to secure health insurance in New Mexico because insurance companies will not accept new clients with a “preexisting condition.” Such as pregnancy. We resorted to Medicaid and thank God we did. It was one of the better choices we made this past year.

October 2012: Our house wasn’t sold yet, so we were paying a mortgage payment plus rent on an apartment that turned out being more expensive than we had thought it would be. We made some great friends through our church, and that was really nice.

November 2012: Jeremy stoped receiving new assignments in the mail from Magnificat. It was clear that after 5 years as a solid employee, they were terminating his contract without offering any notice or reason. He supposed it must be related to internal company politics. At least they continued to send complimentary subscriptions to our home.

December 2012: We discover that for some reason, it is not possible for us to run the heat in our apartment if we also want to take a hot shower. We may have started noticing this in November, but now it’s really starting to get old. Also in December, we get a solid offer on our house in Billings! Things keep getting slowed down for one reason or another so we don’t actually close the sale.

January 2013: We sold the house in Billings! Whew, now it will slip onto 2013 tax year filings which is actually extremely fortunate. Also in January, Jeremy has a meeting with his boss during which his boss pretty much tells him he is doing a horrible job at work. Without offering any positive feedback or ways Jeremy can improve his performance. I think the complaint boiled down to Jeremy wasn’t kicking enough kids out of the church religious education program. Or something. Sorry folks, it’s the truth. Around this time we realize that we are deeply unhappy and we start seriously considering moving away from New Mexico, but we resolve to give it at least a full year before we decide. Also in January, Jeremy and I join a class at church that will walk us through the process to renew our consecration to Mary.

February 2013: We find out there is Something Wrong with our baby. The perinatologist outlines some stark possibilities and recommends for us to move before baby is born if moving is what we want to do. We reconsecrate our family to Mary. “To Jesus, through Mary!” We need all the graces we can get.

March 2013: Every time we go for a prenatal appointment there is more hard news. We also get all our papers together for filing taxes. At least we don’t have to file a house sale. We also decide definitively to move. Jeremy gives 30 days notice at work and his boss tells him to clear out immediately. I’m paraphrasing. Jeremy’s car needs an expensive repair to make it road trip worthy. We have to sell our piano because we can’t afford to move it again.

April 2013: Taxes are a bitch and a half. We have to break our lease contract to move out now, so we also get hit hard by the management company. They don’t consider losing your job and a medical hardship grounds for waiving fees. At least they agree to let us pay over 4 months and they don’t charge interest. Moving cleans out our bank account. Goodbye savings. Goodbye house sale profits. Goodbye all the generous gifts our amazing family and friends bestowed upon us. Thank God for our amazing family and friends who helped us in our need. We road tripped to Ohio and that was really nice.

May 2013: We moved in with my parents thanks to their generosity. Lots of prenatal appointments for Agnes, with bad news becoming the norm. U-haul over charges for our “u-boxes,” you know, like we can afford extra expenses. We place both our student loans in forbearance and I transfer the last $20 from savings into checking so our check to Costco doesn’t bounce. Thank God I did it in time. At least it wasn’t too difficult to get set up on Ohio Medicaid and they even gave us food assistance. Without those government programs, we would be done for. I don’t care what you think about “hand outs” but I am extremely grateful for those programs. I’m sorry I’m stealing your hard-earned paychecks. Also in May, Jeremy picks up a part time gig as a pizza delivery driver.

June 2013: Still paying off the apartment management company in Rio Rancho. Still banking frequent-visitor points at the hospital. Still trying to find things that are boxed up from the move. More bad news about Agnes. Whatevs, bring it. Agnes is born! Let the fun begin. We practically live at the hospital as Agnes endures surgeries and the complicated recovery. She is “chromosomally enhanced.” I like to think about it that way. I miss Stephen because I don’t get to spend much quality time with him right after Agnes’ birth.

July 2013: I’ve talked about all this stuff in depth elsewhere on the blog. We’re also still paying the Rio Rancho apartment managers $320.12 a month for 4 months. At least Agnes’ care is covered under Medicaid. Thank God for Medicaid. Agnes does start improving which is really nice. It must be because of all the wonderful prayers everyone sends up for her!

August 2013: Our year is still rolling. At least this month was our last payment to the Rio Rancho apartment. Now maybe we can start saving again. Jeremy’s car is broken again–the same thing that was supposedly fixed in March. Agnes just gets more and more complicated. Now she is getting a tracheostomy and a g-tube. The trach is going to necessitate around-the-clock vigilance which means a home health care professional will be spending the night here every night. For some reason, that upsets me more than the trach part. Jeremy has decided to go to nursing school himself, an idea that was maybe kicking around for a little while but finally decided when Agnes was in the NICU and we witnessed those nurses up-close.

I don’t know what the year will bring, but I’m hoping things will turn around. I’m also going to take real actions to make myself feel HAPPY again. Seriously, it’s been since May 2012 when I would say, “yes, I am generally a happy person and I like my life.” I’m going to join a gym, start following a household budget that includes savings again, try to make better eating choices, and join the church choir. Hopefully when I look back at this post in 3 or 4 months, I will wonder why I sounded so down.

Okay. I’m done. I got the complaining out of the way, now I’m going to go be positive. I’m positive. I’m positive.

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Mary, Help of Medicaid Applicants

I don’t think that’s one of Mary the BVM’s official titles, but it should be. If you’ve ever applied for assistance from the state, you know the process can be tedious, circuitous, belabored, nit-picky, etc. My experience was nothing short of miraculous. Thanks, I’m sure, to the Blessed Mother, help of Medicaid Applicants.

First, I walked my butt down to the Department of Jobs and Family Services on Friday to turn in my application and let them photocopy my birth certificate. The clerk told me the agency would call me later to set up an official interview appointment. She said it could take two weeks to get an interview. She said there is no provisional coverage while my application is pending.

Second, on Monday I received a call from DJFS saying I can come in tomorrow between 10 and 12 noon for my interview. Okay, so that is lightning fast governmental efficiency I did not expect. I had been hoping to get an Ohio driver’s license first and for Jeremy to land a job before my interview so I wouldn’t have to walk in looking like a vagrant deadbeat.

Third, I tried to get a driver’s license, but they needed to see my marriage license to prove my name change. My marriage license that was in the file cabinet, in a U-box, in some U-haul warehouse somewhere in Akron. This was actually a devastating development because at that point I was convinced I wouldn’t be able to get Medicaid without an in-state I.D. or at the very least DJFS would absolutely require my marriage license as well, which I could not furnish.

Fourth, I sniffled up the hysterics and headed over to DJFS for my interview “appointment.” We arrived at the office at 10:16am; I know this because the take-a-number ticket has a time stamp. At 12:15pm I sent Jeremy home with Stephen who looked like he was about to pass out from being hungry, tired, sick, or possibly all three. I watched all the DJFS employees waltz through the lobby on the way back from their lunch break. My number was called a little after 1pm!

By the way, if you ever want an interesting experience, go sit in your local county aid waiting room and listen to the ladies chat with each other. All I will say is OMG.

The actual interview for medical assistance went rather smoothly, despite the fact that I could only provide about 2/3 of the documented evidences the agent wanted from me. At least I had proof of residence and pregnancy and identity and citizenship. After all the difficulties, I ended up qualifying for medical assistance and food assistance. The agent would say something like, “do you have your marriage license?” And I would answer something like “no, it’s still packed.” And he would say “That’s okay.” Really? Great!

Jeremy told me later that when he was in the car on his way back to pick me up, he had a strong impulse to pray, so he prayed a decade of the rosary and a flying novena (9 Memorare prayers). He thought maybe I was in the interview. He was right, and thanks to his prayers and the intercession of Mary, Help of Medicaid Applicants, I will receive my assistance cards in the mail within 7 to 10 business days.

Amen. Alleluia!

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Progress is Progressing

We’ve been spending most of our time plugging away at our moving to-do list. The most recent accomplishments are:

1. We cleared out our kitchen of all kinds of glassware, plastic storage tubs, extraneous spoons and gadgets and cutting boards, dry goods we won’t use and half-empty bottles of vinegar, etc. We also identified a few items we want to unload right before we pack up and leave. We’ll need them between now and then, but we won’t need them once we get to Ohio and move in with my gracious parents.

2. Jeremy cleaned the car. Picked out all the trash, dusted and polished the insides, washed the windows inside and out. It looks great and ready to go on a long, muddy, dusty road trip.

3. We decided where we are going to procure moving boxes and packing supplies. We looked at a bunch of different options, but the cheapest one ended up being good ol’ Lowe’s down the street. Their boxes are the least expensive and come in three very useful sizes. We had good forethought and saved all the specialty packing supplies from our last move. That means we won’t have to repurchase bubble sleeves for glassware, lamp boxes, picture boxes, or anything like that. We even saved a big roll of bubble wrap. Go us.

4. I got my medical files faxed over to the practice that will begin seeing me as soon as I get to Ohio, like literally almost the next day. Thanks to my mom for hooking me up with the doc, who just happens to have expertise in high-risk pregnancy. Plus they even accept Medicaid, and will even see me if I’m uninsured (all they want is a deposit that they will refund when I can finally produce proof of coverage).

5. One thing I haven’t done yet that is actually the most important is file an application for Ohio Medicaid. As far as I can see, it’s impossible to do before I actually get to Ohio. The online application they want you to fill out doesn’t leave space for soft answers. “Income: I don’t know? Medical expenses: I don’t know? County of residence: will be Summit county in 3 weeks?” I think I actually have to call and talk to someone and that is frankly a very terrifying prospect. As if it might even be possible to talk to a person at the Medicaid office. So I keep putting it off.

6. We are poised to cross off a few more list items by the end of the week, but we can’t do it quite yet. We are very close to being able to file our tax return. And we’re honing in on travel arrangements for the cat. We also need to hear back from two of our prospective overnight hosts on the road to confirm that we can stay with them. When those things happen, our list will be almost entirely completed!

Not much news from the docs this week. The only new information is that apparently our road trip perfectly coincides with the point in my pregnancy when the doctors will want to start seeing me really often to monitor the baby. So, my primary OB wasn’t too keen to hear that we plan to be on the road for two weeks. It’s also getting close to the crucial time when my docs may induce labor and delivery for the health of the baby. My doc here told me it isn’t likely I’ll carry my little girl past 38 weeks, and it could end much sooner than that if things start to look awful. It all depends on what my next ultrasound reveals. If the baby looks good and is still showing signs of development, we can road trip. If the baby doesn’t look good, they will want to start monitoring about twice a week. Which means I will be making last minute travel arrangements to get my butt to Ohio as soon as possible. That will be very expensive and inconvenient and a big fat bummer, so I hope the baby looks good and my road trip gets the green light. As it is, we’ve already planned to contract the second half of our trip so we get to Ohio sooner. We’ve already booked our trip through Billings, so I really hope we don’t have to alter that part of the trip. Or God forbid, skip the trip altogether.

Hoping, hoping, hoping….

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