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kkatowll's Journal

9th January, 2017. 1:54 pm.

I've now spent about $70 but I think it will allow us to take Alice home when she gets discharged from the hospital.

Which could be tomorrow, but probably not.

To update (does anyone even follow this? maybe I will want to reread it someday to just holy crap this was a crazy time): On Friday the rehab place freaked out and sent Alice to the ER because she was bleeding.

At the ER they found her INR was 5.2. Btw, the rehab place SWORE they had been testing it and reported freaking amazing numbers to us which we should not have believed...because they were not true. Living with us, she has NEVER been that high. WTF did they even do?? Give her too much coumadin? Anyway, it's supposed to be 2.5-3.5. Anything higher and her body can't clot and there's lots of blood. She had a nosebleed.

So, the ER got her INR down to a 2.3 in about 24 hours - quite good. Got the bleeding stopped almost immediately, too. (Alice had been bleeding ALL NIGHT, btw, and they didn't send her to the ER til 10 a.m.)

And then the doctors began to seriously investigate the nausea issue. They did a CAT scan, which found nothing. They did find that she had a severe UTI, which they treated. The CAT scan at least reassured us there isn't cancer in her stomach or something. Now they're going to do an endoscopy, but somebody messed it up and didn't order heparin to lower her INR to 2 for that, so it was a 2.7 and they had to cancel til tomorrow. And then they ordered heparin. I would've been on that but I didn't realize an endoscopy was a bleeding risk like regular surgery. Oh the things I have to learn.

In the meantime, she says her nausea is gone but that when she eats she feels a terrible burning in her stomach, and the skin around her osteomy is tender. So she's still not eating, which makes regulating INR very difficult. But hey, they need it to get lower anyway...

They also gave her a blood transfusion.

However. Rehab sent her to the ER without her osteomy supplies, or her special leg support for the broken hip, or her puller-grabber things so that she doesn't bend over to reach things (she can't bend for another 3+ months) so she has one that she uses to put her socks on, and another to grab things off the floor. I brought her more osteomy supplies, but the other items are at the rehab place.

And to make it all better, now it's flu season and no children under 12 are allowed into the hospital. Also no one with a cold. It was devastating...Alice was finally, for the first time in two months, well enough to play with KB. They had just started to play together with a ball I had brought when the nurse walked in and (very nicely) kicked us out. Of course I understood, but KB threw herself at Gaga, weeping, because she had to leave.

Anyway, we have ordered a bed rail and foot supports for a wheelchair that was left here from when Peter broke his whole pelvis years ago. I've tested driven the wheelchair all over and it fits through the doorways. The bed rail should arrive tomorrow, and the wheelchair is fine to use in the house without foot supports - just not very good for long trips without them. The foot supports should arrive by next Monday, and I'm betting Sandy won't have to take Alice anywhere between discharge and then, presuming she even gets discharged by then.

In other news, Sandy and Jane went on their trip and Sandy loved it. (I presume Jane loved it too.) The restaurant was fabulous and Sandy wrote me a whole ode to how amazing it was. Sandy decided to go all out there and they spent all the giftcards there in one night, and then Jane took Sandy out to the other amazing restaurant on the other side of the hotel the next night. (An Asian place with fire that looked very exciting.)

They had a great time and Sandy was sorry to come back. :)

Alice is in good spirits, and KB is too, despite regular complaints about not having a trampoline. (The replacement trampoline is in the mail - should arrive by the end of the week. What is it like to buy things in person? I don't think I remember any more.)

Aunt Mary was moved into her new home, an assisted living place, so Sandy and I sent her the other Christmas present we wanted to send to her new home: a box of chocolates. We chose a box where the lids lifts but none of the chocolates have wrappers, because I wasn't sure how well she could manage the little wrappers.

For Christmas, she gave me an incredible gift card for skiing, which I'd hoped to use to go skiing with Rebecca for her birthday, but now we will all be emptying out Aunt Mary's house that weekend. Maybe we can go the next weekend. Maybe it will finally snow sometime. KB and I still haven't gotten to go skiing together! We need snow! C'mon, winter! It was 0 degrees today and "warmed up" to 9 degrees. If we have to put up with that level of cold, we ought to get some good snow for our trouble.

I mostly spend the weekend resting whenever KB was asleep, in hopes of beating this never-ending cold. But I also got caught up on dishes AND laundry. Whoa. It's like the house is almost clean or something.

Next I need to get all the things I threw on Alice's bed and organize them....her birthday presents need to be wrapped and hidden somewhere, the broken trampoline needs to go out to the trash...gotta get ready for her to come home!

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6th January, 2017. 10:57 am.

It never ends...

Alice has been saying, for weeks, that she's having a colitis flare-up. We've tried various things and finally asked them to take her to her doctor on Tuesday. On Thursday there was still no movement on this. We insisted on seeing the nurse manager. She shrugged it off, explaining that it's a matter of scheduling. So I told her that it seems to me, for an acute illness, 48 hours is reasonable to get to a doctor.

Then she said she didn't "realize" it was an acute illness (despite two weeks of Alice reporting nausea, vomiting, and diarrhea) and said she thought it was an appointment for a "routine follow-up."

You might ask how she could possibly have thought that when we told her specifically that Alice needed to see a doctor about this illness.

The answer, of course, is that she did not think that.

She just came up with a lame excuse, in the same way that the social worked told us Alice "must have just peed a lot" to explain why her bag was so full that urine had backed up the entire tube.

Today Alice had blood in her stool, so NOW they are rushing her to the ER. They did not call her doctor - the one that wanted to see her four days ago.

They did not bring her to her doctor.

Nope, it's back to the ER!


Also, today Sandy is going on the trip I got her for Christmas. Now her mom is in the ER. I dunno if she's even going to go, much less be able to enjoy it.

How do these places even stay in business???

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4th January, 2017. 4:46 pm.

Sandy has a work friend who has a spouse who she is loosely in contact with, "loosely" meaning "friends on Facebook."

This person linked me into an argument she was having with an old college acquaintance over gay rights. He then kept messaging me privately, until finally I spoke with him briefly, realized I had been sucked into a worthless argument with a stranger, and blocked him.

But I keep thinking about it, because it was such a distasteful look into the Other Side.

His points:
1. "No one" in America objects to gay people or their marriages or their kids, and if the new law is passed, "no one" would use it to not provide essential services, such as medical help. He was silent on whether things like "being allowed on an airline" would be considered essential.
2. We gay people are "shoving our beliefs" down "their" throats by doing things like walking into a store that is obviously anti-gay, such as - this was his example - a Christian bookstore.
3. And we gay people are getting things that "everybody else" is not, such as:

- IVF treatment, which he claimed his son's godmother was able to get through her Navy coverage even though the military doesn't cover IVF. I looked this up. The military still doesn't cover IVF - for anybody, even gay people - but will cover such things if you were injured in the military and that's why you can't have kids

- Parades, which he claimed meant that NYC refused a parade permit to the St. Patrick's Day Parade organizers because they wouldn't let a gay contingent march. I looked this up. The NYC mayor refused to march for that reason, and then major sponsors (including Guinness) threatened to pull out, so they allowed it. No parade permits were denied by the government.

(His response to this was, "You are very good at researching, my friend.")

4. Then he said that being gay is a choice and therefore we could all choose to not be gay and we wouldn't need all these special things.

This is when I chose to tell him the conversation was over and blocked him.

Just sickening. I want to believe most people do not think like him.

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23rd December, 2016. 2:41 pm.

Sometimes the Christmas cheer is tough.

Today at the standard new-patient meeting at Baptist, the social worker told Sandy that three adults and a toddler in Alice's room for Christmas is "too much."

Also, she told her the lounge we had reserved through another social worker had actually been given to someone else.

And that we couldn't use the beautiful huge lobby with its three couches and two overstuffed chairs and amazing tall tree, because "people need to sit there."

But after I gave Sandy a pep-talk, she picked herself up and talked to the secretary in the lobby, which has been empty every single time we have seen it. The secretary said she didn't see why we couldn't use one of the couches - it's a public place, after all, so anyone can use it. So that's what we will do. We're going to do stockings and Santa gifts in Alice's room, then when someone is available to help her stand up and get into the wheelchair, we will wheel her to the lobby and I'll put all the presents under the tree and we'll have a regular Christmas. We're bringing music and food and cheer.

It's going to be great!

There *is* an automatic door there that opens right out into the parking lot, but hopefully Katie Beth will be far more interested in presents than in exploring.

I cannot wait to see her reaction when she opens her giant Mickey present - and when she opens the Mickey Mouse Clubhouse that Alice got her!! It only took me an hour or two to put that together...

Here's hoping she likes the teddy bear and alligator that Santa got her. I'm a little afraid she wants the giant ones that live in the grocery store.

And then a couple days later she's getting a horse she can ride!

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22nd December, 2016. 1:02 pm.

There has possibly been no other day that I have wanted to be home (in a happy way) as much as today.

It snowed overnight and Sandy took Katie Beth out in her skiis for the first time.

We had them all last winter and it never snowed.

Then when it really snowed for the first time this year, I took KB outside and she cried and begged me to carry her so that her (booted) feet would not touch the snow.

But Sandy bought a book ("Mickey Saves Christmas") that features skiing. When they read it last night, I told KB that she has skiis. Wow! So I got them out and put on her boots and strapped her in and she walked all over the house in them.

I told Sandy this morning that if KB wanted to go outside in them, she should take her and not wait for me. Because the snow is likely going to melt by the time I get home, and also it will be dark and cold then. If there is still snow on Christmas Eve, which I have off, I'll take her skiing. But I would hate to have her miss it just because I couldn't be there.

This is our general arrangement - KB shouldn't miss out on things 5 days a week just because I am not there.

So Sandy sent me videos and pictures of KB skiing.

God how I wish I were there!!!!!

If I were home, I would've taken her to the park where we could ski down some gentle tiny hills. I would've towed her all over the yard so she could practice her balance. It would have been THE BEST DAY EVER.

But I am taking heart from the fact that she loved it. There will be more snowy days. I hope. We don't need another 70 degree Christmas Eve!

Also it took me 2 hours to get to work so I'm like, really? I could've worked from home and then I could've taken her skiing on my lunch break! But after wimping out with the last storm, I felt like I had to make a better effort this time - and the roads looked fine. It was only once I got on them and discovered we were all going to drive 5-10 mph the entire way that I realized maybe I should've stayed home...

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21st December, 2016. 12:40 pm.

Counting blessings:

Katie Beth is healthy and developing normally

I have a job, with supportive wonderful people

Alice is alive, albeit unable to stand or walk right now

Sandy is alive, albeit deeply upset

We all have bought each other lovely Christmas presents

We are going to see lots of family over the Christmas season

We have a house, cars, TV, internet, and all sorts of other stuff

REALLY, our only problem is that Alice is stuck in a terrible place for Christmas. That's it! Things could be way worse. While I do feel like we've staggered from one crisis to the next for months now, at least it's just one crisis at a time.

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20th December, 2016. 11:46 am.

Things are looking up, at least a little. Alice is at rehab and her pain is way lower than it has been in the last three weeks and she was actually eager to sit up yesterday. Today they got her up and sitting in a wheelchair!

She wants very very much to be able to come home for the day on Christmas. We do too. (Though I shudder to think of KB's reaction when Gaga goes BACK to rehab instead of staying.)

So we told her, if she can sit in a chair and a wheelchair and get in and out of a car, with our help, we can get her home for the day. That seems to have really motivated her.

We have also reserved the lounge there but it's a soulless sad place with no tree. However, there's also a big lobby with a big tree so we're thinking we could just do it there.

Nothing is as good as home, though.

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26th October, 2016. 11:24 am.

So. Alice's CAT scan came back and it's not good.

The tumor is bigger than before. There is a slight chance that could be scar tissue.

Also there's more specks in the lymph nodes.

So, it sounds like it is stage 3 lung cancer after all.

She is getting a PET scan in three weeks (can't do it earlier because it has to be a certain time after the radiation). Then meeting with oncologist.

The median life expectancy with stage 3 is 15 months. At that time, 50 percent of the people diagnosed have died.

15 months.

KB would be 3. Maybe three. This could be our last Christmas.

I am just so devastated.

There is some hope. Maybe they could operate, though it's dicey with her health. There are a lot of new medications now. The life expectancy figures are always a couple years old so they don't reflect the newest treatments.

This sucks.

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26th October, 2016. 10:33 am. Adventures in budgeting

So, on Oct. 15 by bank did not take out the money for my mortgage. Being that it was a Saturday, I waited til Monday and then called. They said, oh, on Oct. 1 we sold your mortgage to this other company.

WTF?? Without telling me??

Oh, we don't have to tell you. But don't worry, you have a 60-day grace period to pay them.

So I called them (I can't remember their name). They said they had sent me a "welcome letter" on the 17th (the day I called them, isn't that convenient?) and that I could pay by phone right now with just a $20 fee! Oh and my mortgage was due the 15th so there's a late fee. I could mail them the check, but it will be considered late, of course, since it is now the 17th and the check won't arrive for a few days.

So I told them, "This is how you're going to start our relationship?" and they backed down and said, oh actually we see you don't have to pay a late fee this month.

They offered the pay by phone thing again and I refused, because I don't want to pay them $20 for the right to pay them. I wanted them to set up an automatic deduction, like I had before. They couldn't do that because my account hasn't been set up yet.

When will it be set up?

Oh, within 60 days.

You have GOT to be kidding me.

So I finally got them to give me the mailing address and mailed them a check, which I was relieved to see they cashed today. Relieved because, when I got their welcome letter a couple days ago, it said I should not mail personal checks! Who doesn't use personal checks?? So I began to worry that they would actually send my money back. But no, they cashed it. I am not worried enough about "mail security" to send them Western Union checks or whatever. I looked that up and there's a $20 fee for that too. Insane.

I suppose it's just $20. But that adds up. And anyway I am morally opposed to paying people for the privilege of paying them. Now I have to mail them a check again for November, because god help them if they set up my account in a reasonable period of time.

My mortgage has never been sold before and I am seriously annoyed by all this. I've read about how bank sell mortgages all the time, but I didn't realize it was this annoying. I complained to HSBC and they said that they COULD have transferred my payment information to the new bank but didn't because of some personal security policy. I was like, in my mortgage documents, the new bank has everything else about me - but you balk at the one piece of information that could make it easy for me to keep paying them?

And I've only ever been late once, and that's when they changed their online account thing years ago and it took me three days and multiple calls to make the darn online payment work. I don't think three days late counts, anyway. They waived the late fee at the time.

I actually told them that - I am a good customer, I am never late, and you do this to me? They told me it was nothing personal. "We package many mortgages together and sell them as a block."


I anticipate many more phone calls as I get the online auto-pay set up. They have to send me a piece of physical paper that I must sign and return with a physical, voided check. Are you serious? Also, why does this still take 60 days?


I told them that I was able to go on Paypal and set up a bank account there in three days MORE THAN A DECADE AGO. They told me I can pay by Paypal - with a $20 fee.

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25th October, 2016. 3:11 pm.

It is nearly Katie Beth's birthday! She is so excited. Every day now she asks to read the Pookie Birthday book. Yesterday Sandy said, "And YOUR birthday is in three days!" And she answered, "No, 30 minutes!"

By this time two years ago, I was walking so slowly that Wayne said I walked slower than his disabled student! I am so glad to not be pregnant anymore.

Today was the seventh anniversary of Sandy's trip to Disney with Jane, so we all looked at the photos together when they popped up on Facebook memories. KB was delighted to see pictures of Momma on roller coasters. And she was excitedly identifying Mickey in every picture. He is EVERYWHERE. She could find him no matter how tiny he was.

Poor Katie Beth, too short for the exciting-looking, terrifying roller coasters.

But she has to be just 36 inches for Diggerland. We are soooo going next year. Hopefully she will be 36 inches by spring. I don't want to go in the summer when the lines will probably be crazy. She is going to LOVE driving real construction trucks!

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