Just Laurel

finding normal

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I went to work this morning. It was nice. It felt normal. Ted got to work and Amanda was at the house with one of her staff girls. No hospitals. Every one was good and doing something normal.

This afternoon, per Amanda’s desire, we moved her back to her apartment. Ted made a check list for her staff so they could keep track of her medications as well as documenting her O2 sats and heart rate and making sure Amanda does her breathing exercises. I am going back this evening to spend the night there. Ted was planning on getting up really early tomorrow morning to leave for PA, so I might even sleep better at Amanda’s apartment if I don’t get woken up by him. I also want to make sure that Amanda is okay her first night back. Things aren’t going to be like they were before her hospitalization. We were just getting used to Amanda in her apartment and were finding a new ‘normal’. Now we have to find it again. Plus, we are kind of on a holding pattern until Wednesday’s trip to Children’s Hospital. Who knows what can of worms that will open up.

When ever I think of trying to get things back to ‘normal’ I always think of the movie “Young Frankenstein” by Mel Brooks with Gene Wilder, Marty Feldman, and Terri Garr. Dr. Frankenstein sends Igor to the brain bank for a brain for his monster. Igor drops the brain he went to fetch and, well, grabs another one. I had to share the scene with you:

It’s the joke around our house that when things aren’t going well, things are ‘abby normal’. If an abby normal brain can result in a monster, well an abby normal life around here results in discord and uneasiness. But patience and perseverance will have to rule while we wait for Children’s Hospital and the doctor’s there to examine Amanda. I only want her back to the best she can be so she can enjoy life in her own place. I don’t like abby normal.

Here’s hoping we soon find a normal.

just Laurel

weary

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Yes – home is a good place to be.

The past three weeks with Amanda in the hospital were not fun at all. They were exhausting. It’s like being gone on a vacation out-of-town for three weeks and then coming home to play catch-up on the bills, laundry, and house cleaning. Only it wasn’t a vacation. And Amanda is still on the mend. She wants to go back to her apartment (which is a good thing) but she is still a bit weak and her staff has to be made aware of what to look for in regards to Amanda’s health, and of the new meds and treatments she has now.

Our next step is to get her evaluated at Children’s Hospital, so we are resting up for that. We are going on Wednesday.

I get to go to work tomorrow – I like my job! Ted and I are taking Amanda to her apartment for the day. We’ll see how it goes. She just seems a bit weary. We all are weary.

Isaiah 40:31 But those who hope in the LORD will renew their strength.
They will soar on wings like eagles; they will run and not grow weary,
they will walk and not be faint.

Hope all is well.

Just Laurel

day 21 part 2

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We are home HOME H O M E !!

Feels great – I want to crash on the couch with a big blankie and just relax and fall asleep.

No more blogging for today … going to relax and feel at home – finally.

just Laurel

day 21

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We’ve been here three weeks!

We’ve been here three weeks.

We don’t exactly want bragging rights for that little fact.

The new bi-pap is lovely, as lovely as bi-pap machines can get. It’s actually quieter than the one Amanda has at home and used previously. Amanda loved the new mask that came with the new machine – it fit quite comfortably and she slept well. I am getting the hang of sleeping in a chair. (again – not a fact I am seeking bragging rights for)

Her morning PCO2 was 46 – just one digit away from ‘normal’ but I am sure it is close enough to please the doctor. Interesting that her PCO2 now has been in the 40’s the past three mornings – which is good. But last evening after being up and about all day her PCO2 climbed up to a 60. They also did a pulmonary function test yesterday on Amanda. The last one she had was 5 years ago after her last bout of pneumonia. Her lung capacity decreased only 5% from five years ago – so not much of a drop considering it took five years to drop that small amount. I think the doctor liked that – he actually was chatty and smiled a few times last night – I believe he was actually surprised (and pleased) at her progress.

So Amanda is up in her wheelchair, wearing a fresh hospital gown, looking light and fluffy following her morning hair wash (thanks mom), has partaken of her morning ham and cheese omelet, and mom has had her vending machine coffee. We are now stuck in a Cinderella limbo. Outside I can see my van parked in the parking lot. Like Cinderella’s carriage, it awaits to take her to where she wants to go – home. But Cinderella-Amanda can only go to the ball (home) IF the pulmonary doctor okays her discharge and gets all the paperwork and prescriptions and instructions written out, IF the medical supply place gets a tank of oxygen delivered to us at the hospital (She has been on 1.5L. of oxygen during the day but she has not even needed it today – doc said as long as she stays at 94 and above on her O2 sats – she can stay off but to be on the safe side they want a tank of oxygen with her for now), and IF the heart doctors don’t screw things up for us. The pulmonary doctor is still bothered that Amanda’s heart rate runs so high – the cardiac doctors were already consulted, did a heart ultrasound, and have said that her heart looks great – but pulmonary doctor would like to see it lowered. I think I will beg them to let us go home and promise to bring her back for them to scratch their heads about this on an out-patient basis. So, IF all the little things get taken care of – I don’t see why they can’t let us go. I know that we have some things to follow-up on but enough is enough.

So we sit and wait.

just Laurel

day 20

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Finally.

Slept like a log last night. Went to work this morning. Huge thanks to my bff Clara for coming to hang with Amanda so Ted could go to work at 11am today after spending the night here. Thanks to Cathy T. for stopping by to visit and bringing brownies and diet coke and other yummies. And …

The ‘machine’ is HERE! Woo hoo! It’s a lovely little specialized bi-pap … very quiet … very compact … tried it on Amanda and she loved it. So now we sleep with it tonight at the hospital and get the A-OK tomorrow morning from the doctor … and we’ll be home for the weekend! Okay – okay. I won’t get too excited ‘cuz ya never know what kind of snafu’s may happen but it’s looking good.

btw – her PCO2 this morning was 44.3 – normal AGAIN. Things are looking up. We still plan on a visit to the neurosurgeon – but that will be next week on an out-patient basis and after we’ve rested for a few days.

Things are looking up.

just Laurel

day 19 part 2

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Houston …. we do not have lift-off.

Apparently the insurance company has put our request under review. I guess they’d rather pay for us to stay another day or two at Hotel Wyandotte Hospital then send us home and simply pay for a piece of equipment. How generous of them.

And fyi – Amanda has insurance under Medicaid – so for all you who voted for Obama – here’s a taste of the fine medical care he has in store for you. Fast and efficient with wise spending of your tax dollars.

Sorry for my attitude.

just Laurel

day 19

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It is f-f-f-fr-freezing here. Not only is it single digits outside, our new hospital room has older metal frame windows and (think of radiating heat) it is actually radiating/blasting cold air. I slept in the chair with a scarf on, boots on, and wrapped in a blanket. Oh wait – I don’t think I slept. Amanda’s roommate had cardiac issues around 10pm last night that kept the lights on and a steady stream of doctors and nurses until almost one in the morning. We tried to sleep from one until 5:30am when the phlebotomist showed up for Amanda’s daily blood contribution. At that time, Amanda and I simply got up for the day. Thank goodness for the coffee vending machine down the hall.

Several calls have been made to the medical supply place today. As of yesterday we were told that as soon as they get authorization from the insurance company they have a c-pap machine ready to deliver to the hospital. I am getting a ‘lil nervous. It is going on 1pm and they better get that thing on it’s way here.

Amanda’s PCO2 continues to bounce around. Yesterday morning it was way high at 69. Today is was 44.4 …. normal. Go figure. We just need to go home and rest and recuperate.

You will hear me cheering if that darn bi-pap shows up this afternoon.

just Laurel

day 18 part 2

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So no bi-pap machine from the medical supply place. More waiting. Another night.

It should be appproved and delivered tomorrow.

sigh

Then it’s ANOTHER night to wear/test it and then go home Thursday?

I’m not going to hold my breath. It’s no fon getting your hopes up.

just Lauerl

day 18

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Hello all.

Well I got to feel semi-normal today and went to work. 730am to 130pm. I was pretty weary but it still felt good to be doing something else besides sitting in a hospital room. Ted spent (an uneventful) last night with Amanda and then left at noon to run into Rouge/Severstal Steel. Thank you Susan for coming by the hospital and hanging with Amanda for a couple hours. Both Ted and I got back to the hospital around 2pm.

They finally moved Amanda out of her ICU room to a regular room – so check with me before coming to visit as we have a new address. The news is a bit more encouraging today – there is a wonderful respiratory therapist named Laura who has been tracking down another medical supply place that we can use and is busy filling out and faxing the info they need to get her the correct bi-pap machine. We are pushing to get it by the end of today so that she can sleep with it tonight, get tested in the morning and go home tomorrow.

So that’s what we are hoping and waiting for.

Of course I will keep you updated.

just Laurel

day 17 part 4

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Ahhhhhhhhh.
Nooooooo.
Unbelievable.
So the medical supply place says – “Oh she already has a bi-pap” and so we had to argue with them that yes, she does have a bi-pap but it’s the wrong kind – the docs want her to have a different kind. So 45 minutes before the medical supply place closes they finally get it that it’s a certain kind we need – and they say that we need this test and that documentation and of course once we re-write the prescription correctly for them they will order it, but of course it will take a few days. Are you kidding me???? So we stay in the hospital for a few more days until all this stuff gets worked out and they get the right equipment? No wonder medical costs are so high. Now the hospital gave the medical supply place the prescription on Friday – to give them heads up and a head start. Oh my. I want to puke. Do you know how much quicker Amanda would recover if she could be home, sleep in her own bed and all instead of hanging in the hospital a few more days???? Not to mention what’s left of Ted and me.

So totally frustrating.

just Laurel