A moment of clarity

So I had a moment of clarity when I woke up this morning.
For the few months that Phil was feeling well, except for going to the scheduled doctors appointment and the surgery, I made no effort to call and schedule extra appointments. There didn't seem to be a reason to since the treatment plan he was on was working.

Well this week. I don't know what happened differently but if you read my previous blogs, something is gone totally wrong.
This morning I think God spoke to me.
This idea of getting a second opinion was really strong. Not only getting a second opinion from a different GI (although the GI he has now is supposed to be the best one in town). I had a realization that maybe we should visit a neurologist. Maybe the problem isn't actually his inside parts but a neurological issue that's causing all this pain. So my plan this week.
We see pain management on Monday.
Call the family doctor get a referral to both a neurologist and a new GI.

We'll go from there and see where we are at.
He also has to get his blood work done, both for the current GI he is seeing and for the allergy clinic that he goes to.

I absolutely can't believe he is back in this much pain again. He was doing so well.

Another Day

Day two of waking up and almost going to ER.
Back to the routine of sitting a bath and taking a handful of meds to get the pain to go away.
This time Phil was only able to keep the pain away for 4 hours (its supposed to last 6 hours with one and 12 hours with the other).

Went for a small drive this morning since Phil has been home almost all week.
But again, it was like he ran a marathon and is now in and out of sleep.

He gets hot and cold. He sweats then is freezing.
He is doing better about not complaining....but today it must be bad because he's been doing a lot of that complaining stuff.

I must have been born in the wrong family....
My mom was totally awesome (at least with me and my grandmother) when we got sick. She took great care of us.
Unfortunately I didn't inherit that empathetic gene from her, so I feel kind of stranded. Actually I've learned to deal with it by taking the doctor approach. I question him about his pain, where its hurting, if he thinks he's taken or done anything differently, then bit by bit I question until we think we've pin-point the problem thus finding a solution.
Probably not a great way to do it, but I guess thats the only way I know how to deal with it.

We have an emergency appointment with his pain management team on Monday.
Cancelled another appointment.
Getting more blood work done.
Going to get allergy shots next week.
Made an appointment with GI for the beginning of February.

The Talk

This morning Phil and I had the talk.
His last pain management regiment went really well. Really well. So well, I wish we could do that one all over again!
I'm not sure if this Celiac Plexus just didn't work as well, they didn't hit the nerves just right, or maybe they missed something or maybe lowering the pain medications was a bad idea this month?
He is more uncomfortable now. We spend most days in our pajamas, ok Phil spends most days in his pajamas. Some days he makes a real effort go get out of the house and we go and do stuff around town. Usually it only lasts about 4 hours and he's back on the couch sleeping like he just ran a marathon.

So this morning, we had the talk.
"Will I ever be able to work for someone else again?"
"Could I make it on the job for a week with out calling in sick?"
"What if the doctor overlooked something?"
"What is this node they keep talking about on my pancreas, that supposedly isn't anything to worry about?"
"Should we get a second opinion?"
"WHAT IF ITS CANCER?" (of course I tell him to be quiet after this)
But then....it sets in. "What if it is?"
So we discuss this further. Other treatment options, second opinions, further testing etc.

Can Phil really just go on living his life through Celiac Plexus, morphine, percocet, and a hand full of other medications that he takes daily, or multiple times a day? Really?
We have no accurate account as to what is really going on. Why treat symptoms if we don't know the cause? Isn't the cause more important than treating something we have no idea what we are really treating?

One thing, I'm sure its not just one thing.
The nose surgery helped.
Next on the list is the allergist.
Get weekly allergy shots.

But allergies aren't connected to the stomach.
Its frustrating. I really really wish things could go back to normal. But if I can't take normal, I'd really like for things to go back to October-December 2011. That was the best he has felt in just over a year.

Some days he wakes up thinking that he might have to go to the hospital. Great. He goes to the hospital. Then what? What do we tell them to look for? They are the doctors, they are supposed to know this stuff but every time we've gone in, they look at us for answers.
So then, do we wait it out and call the doctor? But which doctor do we call? Do we call the pain management about the pain? Do we call the GI Specialist about other underlying issues that could be causing all the pain that he is in? Do we call the family doctor to see if maybe we could just get a referral over to the hospital so our wait isn't so long when we go?

I do have to say, Phil is a super trooper. He has kind of taken to his hobby, but honestly I don't mind. Because it keeps him busy, it keeps his mind off things. But mostly I love his hobby because he doesn't complain. In August when I first started staying at home with him. He would complain everyday. He would lay on the couch, and moan, and groan, and get snappy. He now has sucked it up, learned to deal with it for the most part. On days he really doesn't feel well, he will lay on the couch and either just watch TV or sleep. He doesn't complain (except for today). He has been amazing. Really and truly.

Last week we had Ava home with us for winter break at her school. Although she was sick the entire week, we all sat on the couch watched movies and TV. I'm not proud to say that my daughter now knows all the names of the cartoon characters on TV. Not a proud moment. But it was relaxing. I really saw the bond between Ava and her daddy grow ten fold. He has always loved her and he has done things for her but last week was an amazing exception. He held her, he gave her high fives. They cuddled and he helped her out with her bike and her colors and food and everything. He did good.

Hopefully we will get through these stupid medical humps and be on our merry way. Hopefully someday he will be able to live with out the medication. And hopefully someday we will find the cause for all this craziness.

Medical Update

So about two weeks ago Phil had his Celiac Plexus shot.
Not sure if its working too well this time.
Phil seems to be in slightly more pain than usual after his shot.
Of course Ava has been sick for the past two months (almost straight) so maybe he caught whatever bug she's been carrying around.

He's been in better spirits although with Ava being sick, we've sort of gotten lazy and have spent a good portion of our days (at least this week) on the couch watching TV and movies.

On the days he forgets one of the pain meds before bed it usually takes him about two hours to get up in the morning.

I see improvement. Even with these small set backs, what he's going through now is nothing compared to what he was going through three months ago.
He even complains a lot less!!!

Sometimes its hard for me to tell when he's in pain. He hides it pretty well. When it gets bad he gets a little snappy, but heck, I bite people's heads off if I have a headache.

So while we are entering the new year with high hopes that this year will bring good news, health improvements and everything else. Phil is still truckin'.

A new post!

Well its been about a month since I last did an update on Phil.

Phil recovered REALLY well from his surgery in November. YAY Phil!
His breathing is so much better. His nose doesn't run. His eyes aren't poofy. Best of all; No more snoring!!!

Phil had weekly doctors appointment with his ENT (Ear Nose and Throat doctor) for a little over a month. He has now gave the ok to go 2 months in between doctors appointments. Wahoo!!!

Phil has gone from about 3 doctors appointments a week to about 1! That's a huge improvement! His pain is still...up but he's doing pretty well with it.

We went out of town. He did pretty good! There were two pretty bad days out of the 6 days we were gone. One of the days, I was pretty sure we were going to have to seek out a hospital but Phil toughed it out and we all got through it!

Today Phil went to his first allergy appointment, EVER. Required for follow up so the polyps won't return, at least 10 + years!
The doctor (Ava's doctor too!) went over the paper work Phil filled out.
Then we got to the fun part!
They poked Phil's back 72 times and watched the prick marks for 20 minutes to see what he's allergic to.
Then they retested about 6 more specific trees.
And the test results came back.
Allergic to trees.
Allergic to most Nevada brush and shrubs.
Allergic to: Cats, Horses, Dogs, Feathers etc.
Pretty much to sum it up. Neti-pot
Can't mow the lawn, if he does he has to wear a face mask and take a shower immediately after.
Use A/C from May-October and avoid going out side.

So we now go back weekly for allergy shots (so he can build immunity) for about 6 weeks then every three weeks for 6 months.
Excited and hopeful that these allergy shots will work. :)

Notes for myself

Today was not a good day.
Phil woke up in pain, which is normal.
He wanted to get out of bed, get up and go do stuff. Unfortunately it was snowing so it put a damper on his plans for the day.
We went to the store, on the way to the store he began to feel awful.
By the time we got home, it was horrible.
All of the sudden he felt sick and and ran to the bathroom.
He got sick a couple of times. He has been laying on the couch ever since.

He says his inside parts feel like they are on fire.
I asked him if he thought it was heartburn, he said, not it feels different than heartburn.

He said it felt like his kidneys hurt, and his stomach hurts.
Maybe if he has been swallowing blood it might upset his stomach?

He also hasn't gone to the bathroom for 3 days. :(

I don't understand. The pain medicine seems to make it worse.

Phil's surgery

Wow what a day!!!
Facial swelling in the beginning of October

The polyps before when they were swollen

Phil was nervous this morning when he woke up. I would be nervous too if I was going into surgery. Especially such a big surgery, near the brain. Scary!
I was fine, until we started waiting. And waiting, and waiting. I started to get more anxious. I have always tried to be strong, and supportive. I felt like I kind of crumbled a little bit today!

Phil was nervous. We sat together. Waiting. We got to the hospital around 7:30am. Phil was called back by 7:50am. He changed. A couple of nurses and such came in. But for most of the waiting we were alone. Phil's mom came around 9:30am. The nurses and CNA's came in at 10am to do paper work, start the IV and get the prep started.

By 10:30 Phil's mom and I were shoved out to the waiting area and Phil was wheeled off to surgery.
I was nervous. I had planned to go shopping or do something to take my mind off the waiting. I decided to stick around. Phil's mom and I walked a little bit and she left. I walked. And walked, and walked and walked. I must have put a couple of miles on my shoes today! The hospital is a pretty big place! It has a restaurant/cafeteria, a boutique, a full on Starbucks, and a shop for scrubs. The hospital even has its own post office! It was crazy! I walked around, looked in some of the shops. Went back and waited. Then went to the restaurant and ordered some food. Just as the food came out, the front desk called me to tell me Phil was out of surgery and that the doctor would be out soon to talk with me.

So I hurried, packed my lunch up and went back to wait.
I was a little nervous. They said he was out of surgery but they didn't say how he was doing or if he was awake or ok.
I sat there, but I had a good feeling so I tried not to worry too much.
This is one of the waiting areas


The doctor came out, he was really positive! He said Phil did REALLY well. The doctor was impressed with how well Phil was recovering from surgery and that the pain from the surgery would pale in comparison to what he has been going through for the past few months.

While the surgery would not CURE this problem, the next step is to start allergy treatments to prolong as long as possible the ability for the polyps to come back. The doctor said as long as we keep up with the sprays and allergy treatments, he hopes the next surgery won't be for another 15 years. 15 years is a lot longer than the 3 years this past surgery lasted.

Phil had this surgery in the Spring of 2005.
Phil's recovery this time was so much better. I think his pain tolerance has improved a whole lot with all that is going on. He was awake from 3pm until 8:30pm.
He is doing really really well. We are pleased with how the surgery turned out.
Tomorrow we go back to the doctor so they can remove the packing from his nose.
We are so thankful to all our family and friends and all the love and support we've gotten!