The Waiting Game

Yesterday I mentioned how we were waiting for an opening at a geropsych facility.  Today, the social workers again started checking on a facility that could take Sheila as soon as she was ready to leave the hospital.  This is what they found out:

• The unit at the University of Utah Hospital still has no beds available.
• Salt Lake Behavioral Health says Sheila is too medically ill for them to accept, but might be able to take her when she is much better.

In the meanwhile, the social worker is looking at a long term acute care (LTAC) facility.  There is one, Promise Hospital, in Salt Lake City which is in part of Salt Lake Regional Hospital.  This facility would be used to treat Sheila medically until at a point she would be physically ready to go to a geropsych facility.  A LTAC facility is a step down from a hospital but able to treat patients that need more care than a regular long term care center, or nursing home can provide.

Sheila is still improving each day.  This was day 5 in the ICU.  She spent most of the day sleeping.  She would talk to us as we fed her her lunch and dinner.  She is receiving steroids to help with the inflammation in her lungs and to make it easier for her to breath.  Because of the steroids, they have to keep an eye on her blood sugar levels which requires a finger poke.  She is still on intravenous antibiotics to fight the infection.  Overall, it was a rather quiet and uneventful day.

One of the highlights of Sheila's day was that she got to talk to Holly on the phone.  She was so very excited to get a call from her "baby".  She gave a great big smile when we told her that Holly would be home and in to see her tomorrow evening.
 
Tomorrow we will try to explain why Sheila needs a geropsych facility. 

No Room In the Inn

Sheila is continuing to improve.  Her blood pressure and other vitals are still improving.  They are slowly reducing the number of medications needed to make her stronger.  She still remains on oxygen but is requiring less than yesterday.

Today we met with another social worker from Davis Hospital.  They are trying to make plans for Sheila for when she is medically able to be discharged from the hospital.  When someone came in to do an assessment on her psychological stability she started screaming at them.  With this behavior, no long term care (LTC) facility will take her.  Our only option is a geropsych facility that deals with behaviors seen in older people who suffer from dimentia or alzheimers.  What they are hoping is that if Sheila's psych meds work and are tweeked she will then be able to return to a regular LTC. 

Right now there are four available geropsych facilities.  They are:

• Laveview Hospital in Boutiful:  They say they cannot continue to treat her medically at their facility.
• Salt Lake Regional Hospital:  They only take older patients so that leaves Sheila out.
• University of Utah Hospital:  They have no beds available but they told the social worker to keep checking each day.
• Salt Lake Behavioral Health:  They wanted to see Sheila's records before they made a decision.  So we are still waiting to hear from them.

So now we are just playing a waiting game to see where she will end up.  Unfortunately, with all these facilities being in Salt Lake City, we will be limited to how often we can visit her.  This will be hard for her as we have not missed a day in seeing her since she enter a nursing home on December 20, 2008.  But hopefully this will only be for a few short weeks until we can get her closer to us here in Ogden. 

We are grateful for the many prayers and well wishes from family and friends which we receive daily.  We will be sharing them with Sheila in the next day or so.
 

Anniversary Miracles!

Today was truly a miracle day.  This morning I got a call from one of the social workers for the hospital.  She wanted to talk to me about where Sheila would be going when she was discharged from the hospital.  She goes on to tell me that the doctor mentioned that she might be able to go as soon as Monday.  Knowing how she was when I left her last night, I thought the social worker had Sheila confused with another patient.  The social worker then tells me that Sheila was alert, sitting up, talking and had eaten a good breakfast.

As I enter the ICU, passing the nurse's station, I look down towards Sheila's room and see her looking at me. She smiles and then waves at me. I say to Ashley, "this is not the same woman that I left here last night".  I was truly shocked! 

I asked Sheila if she knew what today was.  She looks at the information board on the wall, notices the date written on it and says, "it's our anniversary".  This was the best anniversary gift I have ever been given.  I told her because of the safety restrictions of the ICU that we would celebrate another day when she got "home".

Throughout the day, we talked, held hands, I helped feed her lunch, and finally helped her talk with Holly via video chat.  She was so excited to be able to talk to her "baby".

Medically she is doing so much better.  Her kidney function is steadily improving, pain is subsiding, and she is much more alert.  They were able to discontinue the drug used to increase her blood pressure.  Her blood pressure has stayed up and her pulsed has fallen to where it needs to be. 

Tomorrow they are going to have someone from the Behavioral Unit come in to assess her.  We need to find out the source of her screaming and how we can control it.

As a family, we thank everyone for their continued prayers in Sheila's behalf.  We truly feel blessed.  Heavenly Father has heard our prayers.

ICU Day Two

Last night (Friday) Sheila's blood pressure continued to drop.  It got so dangerously low that the doctors started medications to get it back up. Also, her blood was not clotting so they had to give her frozen plasma and Vitamin K to bring her blood levels to an acceptable level.

Her overall urinary output is not where they want it to be, so they gave her steroids to help get her kidneys working more efficiently.

We spent a good portion of the day with her, unfortunately she was so delirious, tired, and worn out that she spent most of the time trying to sleep. Unfortunately, the intermittent pain is so frequent, and seems to be sharp, that she doesn't seem to be resting comfortably. Luckily, for the other patients and staff, her CPAP muffles a lot of her screaming and she also gets the proper oxygen levels she needs.

We thank all of our close friends that came to see her today, she really does enjoy your visits and sharing those times together.


(Now you know why I let Holly write the blog postings.  She is a very natural writer with a special gift for words that did not come through her father.)

ICU Round Two...

As I'm sure you inferred from the title, mom is back in the ICU for sepsis. I know what you're thinking, "How could you let this happen again?" Believe me, I'm asking the same question.

Anyhow, she was transferred to the ICU this morning to be more closely monitored. Her blood pressure persisted to drop, and they felt she would be better cared for in the ICU.

She seems to be more uncomfortable and more confused today than she was yesterday, and I'm hoping it's just because things have to get worse before they get better.

We sang a few songs to her before she went to sleep tonight and they seemed to comfort her. I Am A Child of God seemed to be her favorite.

I just have to send a shout out to Sondra (mom's sister, my aunt) and a big Thank You for dinner tonight! It was a relief to not have to cook and she made it easier to get everything done. She's always there when you need her!

P.S. My bags are packed, and I'm boarding the plane for Chicago in the morning. Dad will take over blogging while I'm gone in order to keep you updated. Please keep mom in your prayers!
 

She Screamed!

GUESS WHAT?!? She screamed! And... We went to the hospital. Davis Hospital. We didn't even make it a day.

We got a call today that basically said (I'm not quoting here) "We're sending her!" So, we packed ourselves up into the car and headed to Davis Hospital's ER. Yay!!! ...not.

We get there and she's so dehydrated that they can't even start an IV or draw any blood from her. They catheterized her and her urine was so dark yellow that the doctor took one look at it and said "She's got a Urinary Tract Infection."

They tried again to get some blood from her, and got a little bit, but not enough to do the tests they needed.

Since the whole "reason" we went to the ER was because of mom's abdominal pain, she was taken in for a CT scan of her abdomen. We got the results back, and it looks all clear.

They admitted her because of her UTI and explained to us that her kidneys aren't working very well because she is so dang dehydrated. They're pumping saline pretty aggressively as of now in order to get her blood pressure back up in the normal range.

She fell asleep just before we left, and she looked more peaceful than I've seen her in a while. I'm a little relieved that she's in the hospital's care and that her pain is being managed.

P.S. Since a few people have asked, I thought I'd let you know that I will still be leaving for Chicago on Saturday morning. It is certainly going to be hard to get on a plane and take off, but I know it's what mom would want me to do. Besides, what's happening is going to happen no matter where I'm at, so I might as well go to Chicago and bring mom back a really sweet souvenir! Right? I think so.

Oprah, I hope you've got your bags packed and you're ready to come visit Utah!!! Mom's expecting you!


 

Trapped

So... We had a meeting with the administrators at Mt. Ogden today. Not good.

We were told flat out that by the end of the meeting, they were planning to discharge her home. Yep, you read that right. Home. Which, if it were a feasible option, would have me jumping for joy. However, there is no way that could happen. We live in an upstairs apartment  that we have no way of getting her to or in. Besides that small little detail, she needs nursing care. Hello, people! Don't you think that if having her at home were an option, she'd already be there?

So, we came up with a plan. A plan that I don't neccesarily like, but it's our only option. The next time she screams, they're going to call an ambulance. Then, they're going to take her to Davis Hospital and have her worked up for a psychiatric evaluation. The reason it's Davis Hospital is because they have a psych unit equipped to handle bariatric (large statured) patients.

If we can solve this screaming problem (which I attribute to uncontrolled pain) they say they'll take her back. We'll see. I sure hope so since that's her home.

Dads

I just want to take a minute to say "Thanks" to all the dads out there, especially mine.

There's a saying out there that goes something like:

"Choose the one you love, and love the one you chose"  

Well, I've just got to say that I love mom's choice. :) Thank you, Dad for everything you do and everything you are. I love you!

 

We Saw a New Neurologist

This is a lot of information, but that's a good thing. We've been wanting information for a while now!

Okay, Mom was diagnosed with Pseudobulbar affect (PBA) yesterday. You can find out more about it here: www.pbainfo.org The drug we are trying out to treat this is called Nuedexta. (http://www.nuedexta.com/) It's good to finally know what it is affecting her! We should know within a couple of weeks if this drug works or not. Let's sure hope and pray! Prayers aplenty, please. We also need to specifically pray that Medicare will approve it. It's a fairly new drug that is expensive so we hope they will approve it for her!

She was taken off of Copaxone after three years of being on it and recieving no results. She is on no MS medication for the time being. After our follow-up appointment on July 7th, we will probably be starting Tysabri, (www.tysabri.com) a once a month infusion that more agressively attacks the disease. It has it's side effects, but the benefits are seeming to outweigh the risks at this point. Hey, one needle poke a month definitely beats thirty!

 Her new neurologist's name is Dr. Vita (Viktoria) Kaplan, and she practices at the Rocky Mountain Multiple Sclerosis clinic located by LDS Hospital. We were very impressed with Dr. Kaplan, and her willingness to consult other doctors about mom's case. She was also not intimidated by mom's behavior and seemed to understand the situation more thoroughly. She kept the films from mom's first MRI that was done in November of 2008, and wants to consult another neurologist about what she sees.

We have an appointment scheduled for an MRI at McKay Dee on June 20th. We'll see the progression of the disease after that.

We really were very comfortable with Dr. Kaplan and feel it was a productive appointment. I'm anxious to see what is to come with these changes.

The psychiatrist put her on Depakote and Zyprexa, and also doubled her Klonopin. We're seeing less full blown screaming, and more just moaning now as the old drugs work out of her system and the new ones take effect.

I hope this gave you all the information you wanted and needed to know. If you have any more questions you can email me at contacthollylynn@gmail.com

Also, I want to give an MS bracelet (shown below) to any of our friends and family who want one.  I want to do all I can to raise awareness about MS and I think this is a good way to do it. Want one? Just send a self addressed, postage paid envelope to my home address. To get my address, you can email me at contacthollylynn@gmail.com In return, all I ask is that you wear it and tell anyone who asks about it about MS.

 

She's still at Mt. Ogden

Just thought I'd post really quick and let you all know that mom is still at Mt. Ogden. We're still trying to get to the root of the problem, and we've yet to find out what it is. We're meeting with a new neurologist on Tuesday, one who specializes in MS patients. Hopefully she can give us some insight!

Also, recently they've adjusted her psych meds, taken her off of some, and increased others. We've yet to see the affects of that, her body is still working the old ones out of her system. Hopefully we'll see some change soon.
Also, for those of you that come and visit her, THANK YOU!!! SO MUCH! She really does enjoy your visits, she's just unable to speak most of the time now. She knows who you are, and appreciates very much your efforts to come and see her.
She also really loves cards and little notes, we hang them up in her room when she recieves them. If you would like to send her one, you can send them to:

Sheila Sagers

375 East 5350 South,

Washington Terrace, Utah 84405

 
Thanks for reading! Until next time,