Here We Go AGAIN!

Hello, everyone!!

Well, as the title of the this post reads, HERE WE GO AGAIN!  Back to the hospital for Frankie.  Ever since he had his surgery in June (for all you that are newbies to my blog, you can read about all his surgery complications in the June and July posts in the archive) for the AVM in his intestines, he's had problems with severe nausea and vomiting.  At first, it just was every other week or something like that.  Nothing too serious, I thought, as he is on a lot of medications that can cause some stomach upset.  But this past week, it has been very severe and he has been vomiting after every meal.  And I don't mean a little heave....I mean a GIANT heave and I'm cleaning it off our bathroom wall and floor behind and around the toilet.  I don't know where it all comes from, since there can't be too much more down there!  He can't keep anything in!  And his blood pressure was low, lips pale and very dry, he showed all signs of classic dehydration.  Sooooo.....we called Cigna, his insurance and they sent us to their urgent care.  I brought along my camera to break up the boredom as we have been down this road so many times.....here he is in the urgent care.  As you can see, he looks just thrilled to be there!  LOL....

 

I even took a little video, too, of the experience.

I hope nobody thinks I'm goofy or anything....just a little something to break up the time.
We waited for quite awhile in the urgent care and then saw this really nice young doctor that told us there wasn't much he could do there.  Even if he got a CT scan right there, he'd have to send him to the hospital anyway if it found anything.  So off we went to the hospital.  We went to the same one where he had his surgery in June, since they had all the records there.  It was a zoo in there!!  I knew we were in for quite some wait and I was right.  I took another picture of him when we finally got a room.

Doesn't he look all nice and comfy with a heated blanket, TV remote and nurse call button planted in his right hand?  Meanwhile, poor wife is in the corner shivering and snapping pics and videos like some kind of maniac!!  LOL!  To make matters worse, my diabetes decides to act up and what do I have in my purse?  Sugarless gum!!!  So Frankie was a dear and asked for some juice and crackers for me.  The nurse wasn't real thrilled with this and I only got two packages of crackers and one very small juice.  Oh, well.  I treated it like it was a rib-eye meal!  Neither of us had eaten in quite awhile and I completely forgot to stock my purse with some sugar candy for when my sugar gets low.  I hate diabetes!!!  I hope, if I ever get the bariatric surgery, that the diabetes will go away.  It has been known to happen with a lot of people who have the surgery.

Anyway, Frankie had blood work, an IV placed and then he had to have some yummy contrast for a CT scan of his abdomen.  The contrast was berry fusion and he wasn't too excited about it, as he hates fruit.  I took another pic of him and his "cocktail."

 

Look at how thrilled he is!!!  :0)  I had to coax him every "sip" of the way!!  And he had two bottles to guzzle down.

He finally got the contrast down and then waited for a really long time for the CT scan. It was getting to be very late (around 11pm and we had started this adventure at 3pm) and it felt like my rear end was one with those comfy plastic chairs!!  My shoulder and legs were killing me.  I think what saved me was having my Literati e reader there and while Frankie watched TV, I read my book on my reader.  It was soooo nice!  And really did make the time go a little quicker.  

The ER doctor was really nice, too.  He stuck his head in at one point and said that even if the CT scan showed nothing, he was still going to be admitted because his heart enzymes were elevated.  He thought it had something to do with all the vomiting.  I'm glad he told me that plan, as Frankie was falling asleep and I was exhausted myself.  So I left him like this:

He looks so serene in this picture, don't you think?  He's in good hands.  I kissed him good-bye and left.  I actually could find my way to the front lobby without any instruction!  The ER is like a rat's maze and I usually get so lost!!   I found the car, hefted my walker into the trunk and I zoomed off.

When I got home, it hit me.  I missed Frankie already.  Do we know how to ring in 2011 or what?  I hate this so much, I could scream.  I want them to FIX MY HUSBAND NOW!!  And have it last forever!!!  I want my surgery NOW and lose 150 pounds.  I want to go back to work NOW and get money so we can move out on our own.  I want so many things, yet it seems like we keep landing in the same spot.  Nowhere!  Anyway, my sweet mother in law met me at the door with a nice bowl of soup and a grilled cheese and ham sandwich.  She is so sweet to me! :0)

Jackie was really confused to have just me in the bed.  He laid on Frankie's side for almost the whole night.  While I was gone, though, he got "mad" and bored and climbed on top of the computer and my desk and knocked over our external hard drive and left kitty litter trail on my keyboard.  I may have to close Mr. Jack out of the computer room while I'm gone!!  So then he wanted into the towel cabinet and the second I opened it for a towel, he rushed in.  I went to scold him and he looked at me with his cute, killer face and I ran for the camera instead!

The little stinker wouldn't look up when I called his name....he knew he wasn't supposed to be there!!  But he looked adorable, all the same.

Frankie called me this morning and said he didn't get into a room until 3:30am last night.  And the CT scan was normal.  So the gastro doctor came and they are going to put the camera scope down his throat and into his stomach and see what's up...or down!  He'll have that tomorrow.  They have the poor guy NPO (nothing by mouth).  I'll be going to see him soon, so I'll close this post.  Please keep us in your prayers and I will do the same for you.

Hugs to all!!

God bless you,

Siggy bar by Helena

NIGHTMARE

If I had only one word I could use to sum up the last two days, it would definitely be NIGHTMARE.  What should have been the happiest day (or one of them, at least!) of our life has turned into one living nightmare.  My husband was released from the hospital July 27th after a one month plus hospital stay after having surgery to remove an arterio-venous malformation in his intestine.  As you all know, he ran into many complications, hence the lengthy hospital stay.  Well, on the day of his release, his blood pressure was very low. I'm talking in the toilet low. The nurse had him lay, sit and stand while she took various blood pressures and the good news was there wasn't too much of a change when he changed positions. The bad news remained that his pressure just was too low.  The nurse stated she would hold his Lopressor (a beta-blocker for the heart that lowers pulse and blood pressure) and see what happens.  He was placed on it in the first place because he has chronic atrial fibrillation and was taking Atenolol at home, but they changed it to this Lopressor because his heart rate during hospitalization was in the 130's. Normal is 60-100 for adults.  His blood pressure range was 80's/40's and normal for adults is 130/80.  So you can see where I was very worried over his numbers.  But, the hospital wasn't too concerned and sent him home anyway. I just thought we'd pump him full of liquids, feed him well and hold any kind of blood pressure medication.  I don't care that his discharge instructions said to take them!!

He was OK that night, and slept most of the night.  I couldn't sleep, I was too busy worrying about my husband.  He's such a trooper, I've been taking his blood pressure so much you can see the cuff indentation in his wrist...I have one of those units that fits on your wrist and takes the pressure that way. Very nice unit.  The following day, the 28th, started out with a bang and ended that way, too.  My husband had taken his Gleevec (cancer med) by mistake on an empty stomach so a few hours later, he's in the bathroom praying to the porcelin god!  He threw up so much, I think it was coming clear down from his toes.  He vomited about three separate times and then that stopped in the afternoon.  Whew, we thought, that is over. No more taking the Gleevec on an empty stomach! He just was confused, I think, and fatigued after being in the hospital for so long.  So I'm "helping" him with dispensing his medications for awhile until he gets back to "normal."  He knew better than to take that Gleevec on an empty stomach, he's only been taking it the past 7 years!

We get through the early evening OK and then BAM! He starts shaking and having severe chills. I check his temp and it's 101.4.  He also was draining quite a bit from his JP drain in his abdomen.  The area didn't look infected or feel warm.  This temp had to be coming from somewhere!  And then his BP got really low again.  My mother-in-law and I were up all night with him, stuffing him full of gatorade (which he hates but needed because of the electrolytes), sandwiches, water, milk, soda and anything we could think of to help get his blood pressure up and circulating inside his body.  By 10am this morning, his blood pressure was 71/45 and we had done all we could.  The ibuprofen I gave him for his fever worked and his temp was 97.3.  It was hospital time, though, with that blood pressure.  So I packaged everything up-my blue bag that I had received from the hospital when Frankie was very first admitted because I was his PAL, which is a program where patients can choose one person to act as his liason and stay with him for as long as needed to comfort him. I even received a pin and a discount in the cafe and cafeteria in the hospital.  Anyway, I put my book in there, a few sandwiches and drinks for us as you just never know how long you will be sitting there!  I've been to a lot of ER's where you wait a good four hours to even be seen!  So I came prepared!

We get down to the ER and everyone was so incredibly sweet there. We had only a 10 to 15 minute wait and he was taken back to a room and they started an IV to give him fluids and he also had labs and blood and urine cultures taken.  He also had an X-ray of his stomach and pelvis because last night, he was so dizzy, he fell in our carpeted hallway and got a nasty abrasion to his left arm. No other injuries that we could see outwardly, anyway.  And he didn't hurt his head with the fall. I did tell the doctor about the fall, though, so she could examine my hubby more thoroughly, especially his head.  But lo and behold, all the tests and X-rays came back as normal and they were shipping him home with a prescription for an antibiotic (Augmentin) and with the instructions to get a hold of his surgeon tomorrow.  His BP when we left was a whopping 93/47.  I guess that's the new norm now as I couldn't get anyone else excited about it except for me and my husband!

When we were going to the car, the wind really started to whip up and we were getting some major monsoon activity going on.  I DID pray for rain, but not NOW! I wanted to be at home when the skies opened up and water poured down from the clouds above!  But no, we were pounded with rain all the way to the pharmacy and then to home.  Frankie said he was feeling better and ate a good meal of soup and English muffins  with raisons. Then he went and laid on the bed for awhile until it was his turn to use the computer (we share a desktop).  He was doing OK until just a little bit ago when he came into the bedroom just shaking again. This time he had no high temp, it was 97.8. I gave him some ibuprofen just in case it was trying to creep up.  I wasn't crazy enough to do a BP....I just couldn't bear anymore bad news at this point!!!!

I am just so frazzled and frustrated and aggravated. Why us all the time? Why can't we have a normal life where you go in for surgery and come out the same week with NO complications?  My mom was like this, too. All her surgeries ended in post-op infections that led to further surgeries and extreme pain.  Just once....just once I'd like NO complications after EVERYTHING we do!!!  ARGHHHHHHHHHH!

There, I feel better with getting that off my chest. I feel like crap myself. I'm so exhausted that I'm BEYOND sleep. I feel like I've got my candle lit at both ends that are fast approaching the middle of the candle!!  I find myself being short-tempered and irritable at anything and everybody.  My joints are on fire and my muscles are stretched beyond their limits.  I've had to take more medication than I'd like just to get at least a few hours of sleep. I just don't know what to do anymore and that is such a helpless feeling!!  So I continue praying to God that He will help us all through this rough patch.

Frankie is still sleeping, so I guess that's a good sign. No more shaking, so the ibuprofen must have helped.  I started making all his post-op appointments, August is slowly booking up and we haven't even ended July yet!  Thank God we have a car now. I remember this time LAST year when we had no car and had to shoot across town to our appointments in a taxi paid for by our health insurance.  I'm grateful, of course, they covered that.  But nothing is better than having your own set of wheels and we are so in love with the car we selected. My husband found it off of Craig's list and just at the right time.  It's a 2000 Toyota Camry, but it was taken such good care of that it looks and runs brand new.  It's a comfortable riding car and you don't feel every bump in the road.  I like that, as I don't like cars that you can feel every joint-jabbing bump in the road!!

Okay, I'm gonna end this post and go check on Frankie.  Thank you for letting me rant and rave for awhile.  It did help and I feel a lot better, just getting my feelings out on paper.  I think that's why I love writing so much. I'll end this post with another one of my poems written long ago. Hope you enjoy!  Have a blessed weekend!!

Until next post,
Missy

Along The Road

Floating so freely
With not a care
Across the road and it's gone
Not paying attention to what's fair.
It doesn't matter
It just leaves
Not turning to hear senseless chatter.
It makes not one friend
For it never stays
It had no beginning so how can it have an end?
It moves from place to place,
A drifter-and a proud one
An art done well,
An art done with grace.
Floating so freely, not carrying one load-
It loves life, for it doesn't
Have to live it.
It drifts along,
This leaf hurrying along the road.

He FINALLY Farted!

Whew! I never thought I'd be more happy to have my husband fart!!!  Yesterday he told me he felt some "pressure in his rectum" and it came out in the version of an "air fart."  But hey, in my book, that definitely counts as passing gas!  And then throughout the day yesterday he passed several times. They started him on IV nutrition because it's going on a week and three days since he last ate. And he says he is HUNGRY! So that's a good sign. So finally the colon awakens after a LONG slumber!  Thank God-which I do several times each day for looking after my husband and for saving his life many times over. This GIST tumor is nothing to ignore, I tell you that. When he was diagnosed in 2003, the tumor was basketball sized, just laying on top of several organs and inside the abdominal cavity.  They could only remove portions of it and had to leave a lot of it in because it just was too dangerous to remove it.  So he started the Gleevec and that has been his miracle drug. He's been taking it since Sept. of 2003 and has been in remission.....and STILL is in remission. :0)  Yay!!!  To think this wasn't a tumor at all but just a tangle of arteries and veins in his intestine is phenomenal.  I've never heard of AVM's (arterial-venous malformations) growing in the intestine, but as my husband has proved, they can!

The plan today is to keep up the walking and to sit up more in the chair.  He will have the nasogastric tube clamped and if he has nausea, they will have to un-clamp it and restart the suction.  If he ISN'T nauseated, they will completely remove the tube and start him slowly on liquids.  I hope it goes that way and he can start the liquids.  That is just one more step home! He still is producing more than average stomach fluid through the NG tube, but hopefully now that the colon is waking up, it should lessen.   Another yay!  He says he can't sleep very well as the bed is uncomfortable and he has to lay on his back because of the NG tube. He can sleep for only an hour at a time and then wakes up with a lot of pain.  I feel for the poor guy. I wish I could do more for him!!!  But his colon is slower than the second coming of Christ and was in hibernation for awhile.  I HOPE this is the last GI surgery he needs. I don't think the bowel will tolerate a fifth round!!

My mother-in-law and I will be leaving shortly for another action-packed day at the hospital. We are going to stop on the way there and see if we can find him one of those pocket games that he can play. I know he misses the computer, so hopefully a little game will keep his mind occupied until he comes home.

As for me, I holding in there. I woke up stiff as a board this morning, even more than usual. My thighs feel like someone is jabbing them with knives. But no wonder with all that's been going on!  The fibro is taking full advantage to make me miserable! But I will NOT let it stop me from visiting Frankie. Thank you everyone for asking how I'm doing, too, and for all your well-wishes and prayers. Every last one is precious to me. I feel honored to call each and every one of you my friend.  Joining Facebook was the BEST thing I've ever done as I've found some really great friends AND I could start my very own support group, which is something I've wanted to do for a long time.  So if you haven't already checked it out, please do. Just click on the butterfly image (thank you, Eileen McCarthy-Keddy for the use of her artwork!) above, underneath Jesus and it will take you right to the "FibromyWHAT?" support group.  We have grown so much in such a short time and I've got a fantastic team of lead officers that have helped me out so many ways, I cannot thank them enough. And the members, too.  Let's make "FibromyWHAT?" the BEST support group on Facebook!! 

Happy 4th of July to every one of my American friends. BE SAFE and have a great time watchin' fireworks!!  Here in AZ, so many places have been banned from doing fireworks because of the high fire danger risk, that I don't know if I'll see any fireworks.  So I'll just "light" the ones I have on my farm in "Farmville" tonight. 

God bless ya all,
Until next post,
Missy

One Big OUCH!

Hello, folks!

I am so totally glad that today is OVER with.  It was one of those days that felt like it was in suspended animation...going through the motions, but just not seeming to get anywhere. Ever feel like that?  Anyway, Frankie's surgery is done and over with and he's laying in a hospital bed right now with one big incision running from mid sternum (maybe just a little lower than that) to lower abdomen. No drainage, though, his dressing was dry when I looked at it before I left for home tonight. He has a catheter for urine and a nasogastric tube for any leftover liquids in his stomach.  All that equals to one big OUCH!  We went into his room and he was groaning and white as a ghost. The nurse had just given him Dilaudid for pain and even that wasn't even making a dent, so they were going to check the orders and see what they could do and call the surgeon if needed.  I hated to have to leave him tonight, but I wasn't sure this morning that I could stay with him so I didn't have any of my things with me. He looked pretty wiped out anyway......

Oh, boy! That is what I wrote LAST NIGHT. My mother-in-law came into the computer room and woke me up at midnight. I was fast asleep at the keyboard!!  I'm so sorry this post never made the light of day last night, I was so wiped out myself I fell asleep while writing it! Hope you can forgive me. Before I went to bed (what a novel idea-to sleep in a bed!) I called the hospital and Frankie was much more comfortable and asleep.  That made me rest easier, too.

Ok, Frankie's surgery was a total success!! The surgeon came and told us that he had an "AVM" mass...."arterial venous malformation" which wasn't cancer at all!  Just a clump of vessels in which he removed.  So Frankie has NO recurrence of his cancer!  Yay!  It felt like a weight had been removed from our shoulders. My mother and father-in-law and sister came to be with me and waited the whole time with me in the surgical waiting area.  When Frankie went INTO the surgery, the surgeon stopped and talked with us and said he would take it out IF he could and he didn't sound so sure as he had in the office the other day.  That got us to worrying that the cancerous tumor couldn't be removed. The surgeon said it was attached to his small intestine.  Let me tell ya, it was a LONG three hour wait, but well worth it!!  :0)  I'm so happy, I could dance from the roof top....well, maybe not. After sitting in those chairs for three hours, I felt molded to it!  My right leg is still killing me and the muscle group in that whole leg is one big knot. I'm hoping that in time it will loosen because I think I worried so much, my fibro got control and now that muscle is a mess!  But now that everything is OK again, I can get the upper hand over the fibro!

My plans for today are to go to the hospital and hopefully spend the night with Frankie. I'm his "PAL" (patient assistant liason) which is a nifty program the hospital has that a loved one can stay as long as they like and even get a 20 percent discount in the cafeteria.  Cool!  I can help out with Frankie's care and even go with him to tests and so forth. His room has a recliner which is pretty comfy, so hopefully it won't be too bad to sleep in. I'll give it a trial run tonight and see how I do.

Thank you so much for all your love, support, prayers, thoughts and wishes. I have never had the honor before of being part of such an awesome network of people who really care about each other.  And I've been a madwoman ever since we heard the cancer might be back!  So thank you for being there for us.  We love and appreciate each and every one of you!!!

And again, I'm sorry this post took so long to write. I had to sleep on it, first....LOL!!!!  I think I still have the imprint of the keyboard in my face......

I'll write again in a few days and update you how our patient is doing.  You all have a blessed and pain free weekend!

Until next post,
Missy