She made it!

Thank goodness for the power of prayer. We have been so incredibly blessed with such amazing neighbors...this morning at 6 am, before mom, Arlene and a friend went to the hospital, our wonderful neighbor Maureen and Jill came over and prayed with mom. We found out later today, that they then went for a very long walk, taking turns praying for mom, the doctors, and that HIS will be done. What a blessing they are!!! The good news? Mom went it, and came home...and everything turned out perfectly. The doctors were great, the nurse that came in and stayed with mom was a true blessing (she even told mom that she prays before every patient...mom told her they had all already been prayed for as well!), everything went smoothly.

What did they do? Well, no port in the neck, and no feeding tube. They numbed mom locally, then put a permanent IV into mom's upper right arm. Ben told me (as I am still out of town and have yet to see it) that it looks just like the port for an IV, only there are 2 tubes at the end...one for "feeding" and the other for medications...I think. Visiting nurses are coming to the house tomorrow to teach Arlene and possibly a caregiver how to keep it clean, how to use it for "feeding," and how to bath with it. We have to flush it out twice a day [I'm sure I'm using the wrong terms there!] and from here on out her baths have to be SUPER clean. The good news is, is that this should help mom tons. Arlene will be showed how to also use this to give mom small doses of meds to help keep her comfortable...and help with her breathing.

It's hard to believe all this has happened to my dear, wonderful, strong, mom. Most of you know her as one incredibly tough lady! She's never been a huge fan of doctors and hospitals [saw too much as a nurse!], so having to rely on them now is tough for her. However, she's doing great...and her positive attitude is a lesson for us all.

So, though a long, tough day, mom is home and resting well...and trying to get used to the new things in her arm. Thank you all for your prayers, I was pretty worried about today! Thanks also to our dear friends and neighbors...for their prayers were definitely felt. I'll be in touch again soon!

More changes again...

I only have a few moments, but wanted to send another update. Mom is not going to be able to get the neck port for feedings...she can't lay flat, and that's the only way they can do the procedure. So...they are back to doing the stomach tube. I don't know if they are still going to intubate mom, but that's what they are most concerned about.

Mom goes in tomorrow, Friday at 7:30 am. Please pray for her...only God knows what will happen. Thanks for everything...
Martha

Update on my wonderful mom...

Hello there my dear family and friends...I am writing you from TX! {and yes, it's hot!} I didn't get the chance to tell you about my trip, but I'm flying in a ZERO [T-6, WWII replica of the Japanese Zero] from Houston, TX to Seattle, WA, doing a 2 day airshow [blowing stuff up! I do the same pyrotechnics my dad did]; then flying to Lethbridge, Canada where I get to be a tourist for a few days, then doing a 3 day airshow, then back home. I'll [post some pics tomorrow...got to get going...it's an early day tomorrow! I'm incredibly excited...as I LOVE flying in small planes! Plus, it's a lot of time to get my head back on straight before teaching this fall.

Here's the update on mom: we won't be putting a food peg into her after all. Mom and Arlene went the the coolest doctor today for a check up [i love this man, as he took me seriously and actually communicated to me this weekend!]. He did a lot of research on mom's condition and thought about mom all weekend. Basically, mom isn't able to get a food peg anymore...her muscles are too weak [and a whole bunch of other medical stuff in there]...and there was a HUGE chance that they wouldn't be able to wake her up after the procedure.

So, instead they are going to be putting a port into mom's next into a main vein; we will "feed" mom through IV's at night...slow drips, but full of the nutrients her body needs. She will still be able to eat when she wants to, but won't have to. There are a bunch of other things they will be trying as well, one being a very low dose of morphine to help keep mom more comfortable, and help with her breathing. This was a GREAT day...with good news. The fact that she even needs this is incredibly sad, however it's a quick, easy procedure...and she'll get to come home right away...with lower chances of her not making it through. This makes me happy! Oh, the Dr. also is giving her something else to help dry up the secretions in her mouth, so she doesn't choke. If all goes well, the fear of choking to death will be MUCH less!! What a nice man.

Well, that's about it for now. I'll try to get the more exact details for you all soon. Thursday or Friday is the day the port goes in...I'll let you know more when I do!
Thanks for keeping mom in your prayers...she did so good today! I'm daily amazed at her strong faith and generally positive attitude...I learn from her every day! What a great mom I have!!!

More change, and not the good kind.

Well, much has happened here in the West household these past few days. My aunt and uncle left town for a break [and appointments in MN and to visit other family] and I've been here with mom and caregivers. Things were going really quite good. And then...more choking. Every time she moves [transfers to different chairs, to bed, etc.] more choking takes place. So not fun.

The past 3 days, it's been food...mom can still handle water, which isn't common for this disease, but food is starting to kick her butt. So, that food peg we knew we would need someday? Yeah, that day came and went...we need it now. I spent MANY hours on Friday trying to get Doctor offices to call me back regarding the severity of this issue. I've finally been emailing one back and forth, trying to figure out what to do here. We're trying to hold off until mom goes to see him on Tuesday, but not too sure if we're going to make it.

If we can't wait until Tuesday, then I'll have to take mom to the ER and we'll wait there until someone can do the procedure. However, mom loves hospitals about as much as I do, so I refuse to put her in there until we know when it'll take place! Prayers would be good...today scared the living daylights out of us both. She had at least 2 choking spells each hour during the day today. Those wear a person out! Her spells are more her gasping for air, trying to clear her throat of this sticky gunk, and me pushing on her diaphragm the whole time. They're just downright scary.

Whether we can make it until Tuesday or not, mom will be in the hospital sometime this week for the food peg, or stomach tube procedure. It will be an overnight stay in the hospital, another which mom isn't looking forward to. However, she knows she can't eat much anymore. We went to mostly liquids today, though tonight she was able to eat solids again [until we moved her that is]. This disease is just so weird! On the plus side, during the procedure, they'll knock mom out. The negative side is that once knocked out, they put her on a ventilator...and with her incredibly weak diaphragm, there's a huge chance she won't be able to wake up once it's all over. We just have to keep remembering, God is the author and giver of life...HIS will be done!

I'm supposed to be going out of town on Tuesday...I've had many mixed feelings about going. However, mom's told me multiple times that I need to go. I know that I do...school meetings for this fall start on Aug. 5th, and I need to be recharged for that, however...it's going to be hard to leave her. If something happens of the eternal kind, then I'll know God didn't want me here for it...just tough either way.

So...more life has happened here. I'm looking forward to being able to sleep...alot, but wish with all my heart I could help mom with her pain and discomfort. Also really REALLY wish we already had that stomach tube in! I can't believe how quickly things have changed.

On a happy note, mom just said, "Martha, I'm amazed at how good you are at brushing my teeth! I'm in a state of shock!!" Always the competitive one, I asked if I was up there with Arlene [a 50+ year nurse]. Her response? We're equal!!! I'm so glad...I have found an area that I am good at that doesn't completely turn my weak tummy! WooHoo!!!! Oh...I'm also really good at putting her glasses on her face. That's not an easy thing to do either. Try it sometime...harder than it looks! I am quite pleased that she prefers me to do the teeth over our caregivers...I feel needed! =) =)

I'll keep you all posted as much as possible...this sure has been a long, trying weekend...and it isn't over yet. Thanks again for all your thoughts and prayers...we appreciate them greatly!!

Finally...more pictures!

Here are the pictures from 4th of July at Ben's and from mom's morning breakfast with Caleb. Glad I am finally getting these out to you!

Mom's doing ok, but definitely getting weaker. Her tongue and throat muscles are starting to weaken and her coughing spells are getting longer and much, much, much scarier. She is still able to talk, though usually has to have oxygen to do so at any length, and her speech is starting to slur a bit as well. Arlene and Dick are supposed to be going out of town for the week, and we both know by the time she gets back this weekend, we'll more than likely be using the hoyer lift to move mom. [this is a special machine that kinda looks like a fork lift; we put this canvas holding around mom, then attach the straps to the 'bar'...and press a button and it lifts her for us. We then move her around suspended in this to where we need her, then lower her. We've been trained on how to use it, but it's much easier with two people working it. Mom isn't too excited that we are closer to this stage. The hoyer lift doesn't look too comfortable, either...but when mom can't move it's the only option we have.]

As we figured out at Ben's on the 4th, mom is no longer able to move her legs; she can shift her body, but can't lift her foot anymore and move it. So, one of us tilts her, the other moves her foot for her. She's also having a hard time standing up. We'll pick her up, and yes, she's just about dead weight these days [thank goodness for the world's BEST chiropractor!!!!!!!], then rotate her. However, she is starting to have trouble with straightening her back on her own, which creates more breathing issues as well as anxiety. Mom has been really good at being willing to take pills to help with the anxiety. She never has been a big fan of prescription meds, but as her body starts slowing down, they definitely help...a ton!

I am getting the chance to take a much needed break from here July 15-30 [details to come!], so have been hiring caregivers and arranging hours for people to be here to cover me. I am realizing that I do a TON!! If I ever thought I wasn't much help, those thoughts are gone...I'm a hard person to replace! I feel bad about leaving, but know that I need to get away and clear my head, focus on me for a change, and get my perspective back...so I can come back to the challenges here with renewed strength. We are starting to get everything in order, now just have to make the detailed lists on how I function each day...which is exhausting just reading all we do here!

Thanks again for all your thoughts and prayers...we couldn't do this without you! Arlene and I actually had a chance to sit down last night and just talk while 2 caregivers got mom situated [one on her way home, the other just arriving]. It was really good to talk to each other about mom's condition, what to expect, and just talk. It was also encouraging to hear Arlene say that this has turned into heavy care...I thought I was just getting weak! As mom's condition gets worse, we know all our nerves are going to be a wee bit wacko, but it's nice to know we'll be here for each other...'cause there's no denying it, what we are doing here is rewarding, but beyond taxing...and exhausting...and by far the most emotionally draining experience I've ever had.

I feel so much older than I actually am, and Arlene put it well; I've experienced life, in a way that most people don't until they are much older. There's a good reason I feel out of touch with most of my friends...we are on completely different pages as I've been given an awful lot these past almost 2 years. I've changed...life, the tough stuff happened. And though I'd give anything to have my dad back and to keep mom a little longer, I wouldn't change the time we've had together for anything.

What a cutie!!!!!

"Look, Gamma Joy...my cars!!!" Caleb LOVES putting things in rows!

"Ooooo...Gamma...it's my truck!!!!"

I tried for quite a while, and couldn't figure it out...here Ben and mom are trying to remember how we made a figure 8 out of our old train set...never did get the whole thing done, it's harder than it looks!! We'll have to try again...

Another generation enjoys a GREAT toy!! This was always one of us West kiddos' favorites!

Enjoying good people, BBQ, and many little kids running everywhere!

Caleb rode his bike literally ALL night! He had so much energy...too cute!

"Uncle Dick...did you see the fireworks?"

Dick, Arlene, Mom, and Ben enjoying all the fireworks from the view at the end of Ben's street. You could see every town's displays...beautiful! We had a great time...thanks Ben and Cortney! By the time we got mom home and ready for bed, she slept the whole night through...we were all exhausted, but had a wonderful time!

Busy!

Hello there. Once again, we've been insanely busy around here and I haven't had the chance to update you! Sorry... Ben and Cortney came over the other morning and had breakfast with mom...Caleb was so cute! He pushed a chair over to "Gamma Joy" and lined up all his cars for her to see...absolutely precious. I'll post those pics soon!

My uncle Dick has returned home from the hospital, but it still going back just about every for for lots of tests. He looks MUCH better and seems to be feeling much better, too, which is good. However, he is tired (as is Arlene) and he naps quite often. As I type this, they are actually both napping! Sigh...must be nice. The things I do for the elderly living with me... I'm doing ok, but beyond exhausted. By the time we get mom settled for the night [since it takes 2, I try to get Arlene to go to bed and let the night aide and I handle the situating] it's at least 11:30. Usually, I'm awake by then and struggle falling asleep before 1 am at the earliest. I usually love late nights, but what I would give for a chance to fall asleep early...and not be interrupted! I have a new found appreciation for those of you with small children!!!

Today we are headed over to Ben and Cortney's for their annual 4th of July party. It's a ton of fun...lots of friends and family, good food, great people...plus, where they live you can see every town's fireworks at night! We'll be headed over later than I usually go, as we are hoping mom will be able to last until the fireworks...we'll see. I'll post pics of our time there!

Hope you all have a GREAT 4th of July! Pics to come soon!!!