The follow up GI appointment

Its been a while since I posted progress about Phil. Let me start off by saying, this summer (according to Phil) he has been doing pretty well. And I agree, to an extent. Last week was horrible. It started out with all of us catching a stomach bug. For Phil that meant his pancreas decided to do its thing and not work. Thursday, Friday and Saturday Phil ran a temperature of 105 degrees. He had fevers, chills, hot and cold, aches, pains, the left quadrant of his belly was swollen, he threw up a bunch and not to mention when he ran the fever of 105, he was delirious and doesn't remember a whole lot from those three days. Back to the appointment. Still not sure if its Chronic pancreatitis. Phil now has a standing order to get blood work done when an attack occurs. Next up, blood work. Phil's GI is going to run more tests, even for weird things like a male only hep. He's going to have an MRCP and an ERCP. As for the diet stick to low fat, and when the attacks occur he is on a liquid only diet, home made protein shakes, Ensure and Boost. Phil is happy he can have meat. The only catch, it has to be sliced deli meat. :/ Most of you who read this will probably think I'm the most horrible wife, but we asked the question about cancer. Often there are no signs or symptoms. And most of the people who get pancreatic cancer are men in their 60's or 70's. The doctor was very understanding. He understood Phil's reasoning for not going to ER last week during the presumed attack. Understood to a T. So more testing is in order, go to ER if another attack occurs, and it will be after January before he can get for a follow up with the GI (he's a very good doctor but very hard to get into). Thats all the news we have.

Update

I haven't updated Phil's medical progress for a while. I'm not sure where to start or even how to describe whats going on. Everything, I suppose. He's better, but with getting better, new things develop. Its hard to explain. Phil has an "On" and "Off" switch. Over the past several months, his doctors have come to terms with this. By "On" and "Off" I mean either Phil is laying on the couch or in bed, or he's up and running a million miles an hour. And I literally mean, running. Mowing the lawn, doing house work, working on his hobbies, he won't stop until whatever he is working on is finished. If he's not doing that he's on the couch. He has developed a chest pain that usually happens once a day. He describes like someone stabbing him with a knife, and twisting it around in his chest. The belly pain is still off and on. He gets cold sweats, and hot flashes. Its been an interesting ride. Wish I had more to report.

Its been over a month

Its been over a month since I've posted anything about Phillip and his crazy health conditions.
After canceling 3 colonoscopy appointments the doctors suggested he make an office visit with his GI.
Today was the day of that office visit.
The nodes/lumps or cysts that they found on his kidneys/pancreas and some other organs, will have to be removed.
He has some sort of severe intestinal infection, so that will have to be cleared up.
Basically, he will have surgery at some point either at the end of this month or beginning of next month.

They also want to do another test, but over the phone, Phil couldn't remember what it was called off hand.
I think we are finally getting somewhere. I will learn more when he gets home from his appointment.

Unfortunately I couldn't go because I had to wait for the painters.
But of course, being the person that I am, I made a list for the doctors visit.
Symptoms Phil has had over the last 5 weeks
Questions to ask the doctor
Then a list of suggestions to monitor his insidey parts.

Trip to the ER

While for most people trips to the ER are scare and infrequent.
For Phil, ER is a last resort. When all of the doctors on our "team" can't figure out what to do for him. They actually have recommended that we go to ER while at the doctors offices. But usually Phil will take any other path than to go to ER. He hates hosptials.
I'm actually really proud of Phil. From September 2010-April 2011 Phil had already stayed in the hospital 3 times.
He has been back to ER only twice since April 2011 and both times he was checked in but not admitted to the hospital.
Last night was one of those two times.
I always push for an ER visit. Why? Because I don't know what to do to help Phil when he becomes uncomfortable. I'm not a doctor, and I feel that doctor would have a better idea of what is going on and could help him out. I think maybe I get confused, because this is not always the case.
Yesterday I called DHA (Digestive Health Associates), to check in with the nurse because Phil wasn't able to hold down food or liquids, which was an issue prior to starting prep for the colonoscopy and endoscopy. The nurse became concerned when I told her Zolfan wasn't really working (Zolfan is an anti-nausea medicine) and he had a temperature of 103 plus he had blood tests that came back last week that the pancreatitis was still active. So she suggested we go to Urgent Care or ER to at least get Phil pumped full of liquids.

We first made our way to Renown. Poor choice on our part. 4 hour wait. So we headed back over to our side of town, to Northern Nevada Medical Center. We waited maybe 20 minutes, if that. I'm really glad we got there when we did. The rush came about 2 hours after Phil was taken to the back and given a temporary room.

My dad was awesome and came and took Ava to his house. Although several others were happy to take her, I have to say I'm glad my dad took her. We were in ER until 10pm. I can't imagine anyone else having to deal with Ava attitude on a work night, with a toddler who thinks she runs the world (sometimes) two hours past her bedtime. Maybe its just because we are her parents, but she has been a crazy girl this week. I'm glad Ava didn't have to sit with us in ER. Lots of people were stomach sick (YUCK).
Phil went through 1 bag of fluids in less than 30 minutes. He had four doses of pain medicine, I probably should have written everything down that they gave him, but I didn't. He was also given Motrin,
They took tons of blood, they did another CT scan. They even took about 4-6 samples of blood cultures. They put it in a machine that will test for blood infections. The results for that should come in within a few days.
Mostly he was given fluids and broke the fever.
The CT showed some swelling in his colon but no sign of diverticulitis or kidney stones. So they had some fancy name for a colon infection, and gave him antibiotics, which should also help if he has a bacterial blood infection as well. If its a virus, there is nothing they can do.

So at 10pm we finally got to leave the hospital. 5 hours after being admitted.
Phil still hasn't been able to sleep well. And the doctors think I'm kidding when I suggest to give him something as powerful as horse tranquilizers. I'm not kidding, but I don't want Phil to end up dead either.

Anyways, Phil is out of the hospital.
The colonoscopy and endoscopy are postponed, again.

And hopefully, whatever it is will be cleared up by Monday so Phil can rest up and prepare for our trip to San Diego next week to see our cousin Julie get married!

Pulmonary Appointment

Today was Phil's Pulmonary Appointment.
Who knew there was a doctors that sole focus was the lungs?!
Phil was pretty anxious for this appointment. With nodes (we were told 4) on his lungs, we didn't know what to expect.

The doctor was great! He had a personality, and a sense of humor.
He addressed both Phil's asthma and the nodes in his lungs.

Usually there is a reason or explanation behind asthma but Phil doesn't really seem to have any unusual reasons other than allergies. I don't understand all the medical stuff to explain anymore.

The nodes on his lungs- nothing to worry about for right now. They are too small to tell anything from the scans. They are smaller than the pinky finger nail. They aren't big enough for a biopsy. So the doctor ordered another CT to be done in 6 months.
If there are more of if they have gotten bigger, Phil will be given a sugar substance and then will be put through a PET Scan which tests strictly for cancer. But the doctor is 99% sure that these are benign, or even just scar tissue.

So nothing new to report. We don't need to go back to the Pulmonary doctor for another 6 months.

Glad to know that the nodes were nothing to be concerned about.

Colonoscopy cancelled

Update
We had to cancel the colonoscopy and endoscopy today.

The tri-lite- prep did not do anything to Phil.
If you don't know anything about colonoscopy's- you can go to www.colonoscopyfordummies.com or www.colonoscopyfordummies.org

The test is rescheduled for March 16.

Just a random update

So maybe I just feel guilty because I stay home, and I don't "work" at the moment, but I promise I don't sit around doing nothing.
I did get a nice break when Phil was actually doing better, we didn't have as many doctors appointments.
Once the celiac plexus stopped working, we started going to more doctors appointments.
So my days are full of phone calls to doctors appointments. Yesterday, I spent over 3-4 hours on the phone with doctors. This morning I spent the morning running around getting medications, stopping by doctors offices in person and calling doctors.

I feel like a crazy person with all of these appointments.
I feel bad I don't have a "real" job.
But in the long run, I'm happy to have extra time with my husband. We've gotten really close.
I'm so happy to have more time with my husband and quality time with our daughter in the evenings. We have so much fun together.

A new CT scan

Today was the follow up for the CT scan ordered of the lungs only.
Lucky for us, we have an imaging center about 2 miles from our home. If we were smart, we would have just got out the sleds and headed down the hill. (I'm trying to keep this as light as possible).
We really like the people in the office at this imaging center. They are nice and friendly.
While we waited a bit longer than normal, but today it was well worth the wait.
The imaging tech/doctor (not sure of the exact title here) called us back. She sat us both down then she went over a patient release sheet with Phil.
Have you ever had measles, mumps, kidney failure (yes, yes, yes!), do you currently have asthma (yes!). Since some of the questions had a yes response, she immediately got on the phone with her supervisor, or the on call doctor and asked about giving her 32 year old male patient contrast for this imaging scan (Phil is not a fan of the contrast). So when she came back and said that there would not be any contrast needed for this scan, we both almost got out of our seats and cheered. Almost.
Phil was lead back to the CT room. After only a few minutes (and enough time for me to organize my wallet), I hear "Kelly! Come here!".
I came rushing over to the computer imaging area. And there was the first time, in over a year and a half of testing, that we actually got to see any of his CT/MRI/X-ray scans. We saw the entire lung cavity, the bones, and the dreaded 4 tumors/nodules that the doctors wanted to get a closer look at. I'm not a scan expert, I'm not a doctor, but at least from my perspective, they didn't look too big. At least 2 of them were on the back of the lung wall (which means if they have to be removed, they will be easy to get to). But like I said, I'm not a doctor or a image reader. We will have to wait until March 7th when Phil has his first Pulmonary appointment.

The schedule for this week:
Tuesday- Ear, Nose and Throat Dr. Appointment
Thursday- Blood work
Friday- Endoscopy and Colonoscopy

Next week there are more doctors appointments as well.
We are back up to averaging 3 + doctors appointments each week, in bed 90% of the time and almost a pure liquid diet.

PLEASE KEEP IN MIND- I AM NOT A DOCTOR. I DO NOT KNOW HOW TO READ CT SCANS SO WE WILL HAVE TO WAIT FOR THE OFFICIAL RESULTS NEXT WEEK.

New Updates This Week

We are kind of getting somewhere, maybe.

This is what we found out this week.
At Phil's Pain Management appointment his doctor pulled his current pain medicine. Phil is no longer on percocet, and no longer on morphine. Instead he is on liquid Rococet and a Fentanyl patch.
He was taken off the pills because he couldn't keep any food down for over two weeks.

We finally received news back from his CT scans last week ordered by his gastroentrologist.
He has something called Hemangioma- a benign tumor on his liver.

He has several cysts on his Kidneys which they said were nothing to worry about unless they were causing issues like lower back pain and trouble going potty. If that is the case, then Phil would be transferred over to a Renal or Kidney doctor to possibly do a biopsy on the cysts or his Primary care doctor might be able to help him out with this.

The other concern are nodules on his lungs. Since the Gastro doctor ordered the scans, he can't officially read what these nodules are. So his Gastro doctor ordered another CT of just the lungs, which will take place on Monday February 27. And Phil was referred over to a Pulmonary doctor for his lung issues.

We did find out that the acute pancreatitis is no longer active. At least right now.

Next week Phil is having a CT scan of his lungs, a doctors appointment with his Ear Nose and Throat doctor and on Friday next week he has a colonoscopy and endoscopy for further investigation to his abdominal pain.

Thats the news so far. I think we are getting somewhere. Its taking a while, but we are getting somewhere.

Phil update

Phil had a great four days!!!
Friday, Saturday, Sunday and Monday were pretty good!
Phil had a visitor all day on Saturday, he enjoyed hanging out with his friend. Then at night he was even up for a date night! He and I ate soup.
Then Tuesday morning he had a horrible morning. He has been in bed since.
Tomorrow Phil has a CT scan to see how he processes food.
Hopefully it will go well.

Next up, blood work and a few more tests. Hopefully we can get some answers.

GI Appointment

After much debate through-out the week, Phil almost ended up in ER today.
The scheduler from Phil's new GI office called and asked if Phil could reschedule his Monday appointment for a Friday appointment. I explained what was going on, and asked if Phil could possibly get in for an appointment today. They had an appointment at 10am.

Barely got Phil out of the house. He changes colors more than a ca million these days.
The doctor went over Phil's notes.
This is what we learned.
Phil has
Acute pancreatitis (according one page of hospital notes that were transferred over, and only half of the appointment notes from his previous GI doctor).
Diverticulosis
Lactose Intolerance
GERD
EOE - Eosinophilic Esophagitis
Bacterial growth in his lower intestine

And some other stuff but I didn't understand it enough to write it down.
Apparently there is a lot going on with Phil that even we didn't know about.

I had over two pages of notes that I took at the doctors office.

Current treatment plan
- Liquid only diet (Ensure, Boost and Sherbet ice cream)
Testing will include
- CT Scan
-Colonoscopy
-Endoscopy
-Blood work

The last two are schedule for March 2.
We are waiting for a call to schedule the CT scan.
And we got the paper work to walk in and do the blood work after fasting.
There is a small possibility that if the tests don't show much they will open Phil up to see if they can find anything that the scans and blood work don't show.

Blood pressure was 120/82
Pulse was 88


Some of the symptoms he had this time were
- Abdominal pain
-Bad hiccups (not with in the last week)
-Sweats hot/cold
-Back pain
-Headaches
-Nausea/vomiting
-Feeling full after eating just a little bit
-Trouble sleeping
-Skin changes color a lot
-Sometimes the pain meds don't work
-Swollen left side of abdomen
-Tired/Fatigue
-Weakness

If the symptoms he currently has do not improve, Phil has to go to ER.


On our team of doctors we have
Pain management
Family doctor
GI consultants (now DHA)
Allergist
Ear Nose and Throat

The aftermath of the shot

It has been roughly 4 days since Phil had his shot. He got 5 new holes in his back. Two are pretty large. The first two days he had a rash from the tape. His back hurt from the pokes, but he was in pretty good spirits he moved for almost 2 days straight. Yesterday, everything finally caught up with him and he was in bed most of the day. He was moving pretty good for those two days. We did a lot of stuff in town, he worked on his bike, we went out dinner with my dad. Today he is down and out too.
Not sure if he is still having pain, if its the medicine or if the pain still hasn't gone away.
I'll keep posting and keep updating as the week goes on. Hopefully there will be better news in a few days! Phil has an appointment with pain management tomorrow. Then next Monday he has an appointment with his new GI

The Shot

Today Phil got another injection.
It wasn't the Splanchnic Neurotomy like we thought it would be. It was another Celiac Plexus, like last time. Only this time, we had a chance to sit down with the doctor before hand and explained what happened last time and he gave us possible explanations of why it didn't work like it was supposed to. So this time, they came up with a different tactic. Shoot the left side then shoot the right side.
This means, that they actually shot him 5 times in the back with whatever nerve blocker they use. And this should *crossing fingers* last a full two months again.
If it doesn't work, or it doesn't last as long as it should, then they will go in and burn (with heat) the nerves so the nerves will essentially die off.

I am incredibly shocked out sick Phil has been. Throwing up at least 3 times a week (at least), his color is sheet white most of the time, including his hands. His eyes are purple, he looks like he doesn't sleep, he looks malnourished, just by the color of his skin. He has been looking a little better the last two days.

We are hoping for the best!
Actually while we hope for the best, we keep our goals low, like get out of bed for x number of hours get x, y,z done and if its a really good day, the goal is not to take a nap.

Lab Results

I just wanted to keep everyone posted.
We got Phil's labs back in the mail, they have possible explanations but nothing definitive.
I will post something when we know for sure what is going on.
We meet with Phil's new GI in February so we should know more by then.

Phil is still in pain, but seems to be trying to battle this and get up. Its a day by day kind of thing.
Hopefully we will get more answers in February.
Hopefully a different treatment plan because whatever they are doing now, isn't consistent enough to work effectively.

I'll keep everyone posted on whats going on.
Until then, if you are in the area, we'd love to see you!
Just call or text before you come over to make sure we aren't out at an appointment or something.
If you are out of the area, you can keep following this blog or following me on facebook.

Moving forward

We got a call yesterday for Phil's second opinion.
(I use the term "we" a lot because I feel like I'm going through this as well, I'm the messenger, the call taker, the schedule, the secretary, the note organizer).
Today I called to schedule an appointment.
With a second opinion, you only get one appointment, which you may or may not have to pay out of pocket for.
So Phil had a big decision to make. Get a new GI, stick with the old GI, or go in for one appointment with just a second opinion which may or may not bring the answers that are needed without further testing (remember, only one appointment for a second opinion).
Phil opted to get a new GI. Apparently these GI doctors are hard to come by. His current GI books several months out with his appointment, his referral was for a doctor who we couldn't get an appointment with until April. So I asked for first available, after the old GI signs off on his paper work.

So far, we haven't had to go to ER this week. WAHOO
Phil has really bad abdominal pain. The pain meds aren't even working right now. He spends most of the days in and out of sleep so he doesn't have to deal with the pain. Sometimes he moans in his sleep from the pain.
He describes it similar to passing a kidney stone.
His pee smells like ammonia (sure you wanted to know that, right?), his head hurts and throbs.
50% of the days this week he has been white as a sheet. One day he was sick to his stomach. He feels nauseous everyday.
His nose has been doing something crazy. It just starts leaking water. He can go to pick Ava up and there will be an entire puddle of "water" (clear liquid) from his nose dripping. The other day he looked up his nose. The nasal polyps are back.

He got blood work done Tuesday. I hope we get a call soon about the results.
I also hope we get a call soon to schedule with the new GI.

Another week

This past week was bad again.
While we had an appointment with Phil's pain management and also his new family doctor.
Phil still has to wait to see another specialist to get more questions answered.
His pain was almost unbearable. Everyday we were teetering if we should go to ER or not.
Phil ended up not going to ER.
Just waiting to get in for a second opinion or see his regular GI.

Tomorrow Phil goes in to get blood work done.
Supposed to get allergy testing done this week.

I found a lump on Phil's back. But maybe its just from laying down all week. He didn't leave the house for about 4 or 5 days straight.

Phil's medical notes

Here are today's medical notes.
We went to the family doctor today to get a referral to get a second opinion for another GI doctor. Just to get a second pair of eyes to see if anyone missed anything.

We saw a new family doctor because Phil's regular doctor is out for 4 months cover at the wound care center. We really like the new PA. She took her time. Read the notes, read back the notes, wrote more notes, offered some different ideas that we didn't even think about.

While we wanted to get a referral to a neurologist, all the signs and symptoms still point to Chronic Pancreatitis.
What is Chronic Pancreatitis (even though Phil has had this diagnosis for over a year, I'm still not completely sure what this entails)?
Chronic Pancreatitis is (taken from www.ncbi.nlm.nih.gov)
Inflammation of the pancreas that does not heal or improve, gets worse over time, and leads to permanent damage.
Symptoms include:

Abdominal pain

Greatest in the upper abdomen

May last from hours to days

Eventually may be continuous

May get worse from eating or drinking

May get worse from drinking alcohol

May also be felt in the back

Digestive problems

Chronic weight loss, even when eating habits and amounts are normal

Diarrhea, nausea, and vomiting

Fatty or oily stools

Pale or clay-colored stools

Treatment:

People with severe pain or who are losing weight may need to stay in the hospital for:

Pain medicines

Fluids given through a vein (IV)

Stopping food or fluid by mouth to limit the activity of the pancreas, and then slowly starting an oral diet

Inserting a tube through the nose or mouth to remove the contents of the stomach (nasogastric suctioning) may sometimes be done. The tube may stay in for 1 - 2 days, or sometimes for 1 - 2 weeks.

Eating the right diet is important for people with chronic pancreatitis. A nutritionist can help you create the best diet to maintain a healthy weight and receive the correct vitamins and minerals. All patients should be:

Drinking plenty of liquids

Eating a low-fat diet

Eating small, frequent meals (this helps reduce digestive symptoms)

Getting enough vitamins and calcium in the diet, or as extra supplements

Limiting caffeine

The doctor may prescribe pancreatic enzymes, which you must take with every meal. The enzymes will help you digest food better and gain weight.

Avoid smoking and drinking alcoholic beverages, even if your pancreatitis is mild.

Other treatments may involve:

Pain medicines or a surgical nerve block to relieve pain

Taking insulin to control blood sugar (glucose) levels

Surgery may be recommended if a blockage is found. In severe cases, part or all of the pancreas may be removed.

Prognosis:

This is a serious disease that may lead to disability and death. You can reduce the risk by avoiding alcohol.

Complications include:

Ascites

Blockage (obstruction) of the small intestine or bile ducts

Blood clot in the vein of the spleen

Fluid collections in the pancreas (pancreatic pseudocysts) that may become infected

Poor function of the pancreas

Diabetes

Fat or other nutrient malabsorption

Vitamin malabsorption (most often the fat-soluble vitamins, A, D, E, or K)


Since I was having trouble figuring out what Chronic Pancreatitis was...I thought I'd clue you in on what I know about it.

While this will probably be with Phil the rest of his life, we were pretty optimistic after his appointment today.
Although the specialist could tell us more about this "disease", she was pretty reassuring that if they hadn't found any abnormalities in his blood work just yet, he at least doesn't have cancer. WAHOO. When the doctor told him this, Phil turned white. Whiter than I had ever seen him in my life. I guess that has really been weighing on his mind. So he feels a little better about all this doctor business stuff.

So the notes from today went something like this.
I have a note book that I take so I can take notes at his doctors appointments.
I first listed his symptoms which have over the past two weeks include:
Fevers
Chills
Sweating
Nausea/vomiting
Trouble sleeping
Excessive pain that won't go away with pain medicine
No response to the Celiac Plexus

Our goal at this appointment was to:
Get a referral to get a second opinion at another GI
Question if we should see any other specialist
Any other auto-immune disorders (we will ask the specialist to test for auto-immune diseases)

The outcome of our appointment was:
Continue with Pain Management- best bet to get through this
Get Splanic neurotomy (like the Celiac Plexus but will permanently kill his nerves and if nerves grow back they should not be painful).
Referral request sent in for another GI
Request an Ultrasound/scoping for the pancreas

SSRI's can cause Chronic pancreatitis (did not know this before talking with this doctor)

Weekend Update

Well despite feeling horrible I give Phil and A for effort for attempting to "get back to normal" and get through the weekend.
He got out of the house for a bit yesterday and today he was out of the house for a while also.
YAY!
But he's still in a lot of pain.
I give him an A for his attempt to still do normal stuff.

So we got through the weekend and tomorrow we are off to the pain management appointment.
I plan to still call for second opinions this upcoming week.
Thanks for all of your prayers and your input!

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.