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!

Super Quick Update

I only have time for a quick update.
Phil mostly slept ALL weekend. I'm not kidding. ALL weekend. I got him out for an hour yesterday morning and shortly after he was back in bed and pretty much slept the entire day.

Today Phil woke up in great spirits! He was feeling adventurous and we decided to do a small trip. We drove up to Virginia City. Walked around. Phil finally agreed to let me take several pictures of him! YAY! We walked around, got candy and drove down through Carson City and back up to Reno where we stopped and ate lunch at the Firkin Wolf.

We had a great time while we were out. We returned around noon, and Phil hasn't moved since. :(

Tomorrow he goes in for pre-surgery blood work. Then in the afternoon he has a pain management appointment.
Wednesday is the said day for surgery.

I'll keep you all posted.

Updates about surgery

While I created this blog, mostly for myself as notes and progress for Phil's medical appointments. I also want to share this once in a while because I feel the need to keep family and friends in the loop. While we don't mean push everyone away, Phil doesn't want anyone to see him the way he is.

If everyone knows Phil, at least the Phil that I knew 2 years ago, he was a go getter. Always moving, always trying something new, moving what seemed like 24/7. While Phil liked video games he liked tinkering with things a whole lot more whether it was model airplanes, RC airplanes, RC cars, fixing anyone and everyone's computer, he was always doing something.

In the past two years. Phil has worn out our couch from sitting/sleeping on it so often! This is not the Phil I knew, but this is the Phil that I still love. :) He doesn't want people to see him when he is not well and not himself.

Yesterday we got a call from the Ear Nose and Throat Dr. They called and asked if we would come in to review the scans from last week. Phil got a little excited and thought that since the swelling in his nose went down they weren't able to find anything on the scans! We were both a little hopeful. Almost immediately after the appointment, Phil's nasal polyps went down. He could talk almost normal and for the first time in a year (or two) he could smell!!!

So this morning we went in for the appointment, we got there 45 minutes early. They took us right in!
The doctor came in, and said, "Wow, I don't know how you are breathing!"
Immediately you can guess that our hope for no surgery just went out the window.
We got to see pictures of Phil's head.
The doctor then began saying "All those white spots (big lines, like the outline of the skull) are supposed to be black. It looks like right now, there is no way for any air to get through at all."

Oh.

So not only will Phil be having surgery next week, they are going to do as much as they can through the nose but they will probably be cutting through the forehead and muscle to fix ALL the sinus cavity. While the polyps WILL come back. The doctor wants to work with Phil and get him some treatment plans with the allergist and everyday care for his nose (neti pot and nasal sprays) so that maybe the polyps won't come back for 10, 15 or 20 years. The doctors hope is that he will only have this surgery 2 more times. But this means more appointments to keep his nose healthy and allergy free.

And again, while we were excited not to have any doctors appointments this week, it looks like we had one anyways.
But we are still hopeful and we are glad the scans came back and that this time they are removing ALL of the polyps and this time there is a treatment plan to keep them from coming back as quickly.

Phil still won't allow pictures, so I can't post any pictures yet.

October 23, 2011

Yesterday Phil woke up feeling "AMAZING" so we did the normal morning thing, showering and getting ready and such. The only really odd thing I can think of is that he was watching Ava while I was getting ready. He held her (all 22 lbs of Ava) for about 10 minutes and his muscles began to shake because his muscles are becoming fatigued. After we got ready, we drove around for a bit and ended up taking a trip to Target. We walked around for a bit, killing time. Then Phil started to sweat profusely, and then he turned white. He was super hot and then super cold. We rushed out of the store and into the car and headed home.
While he didn't let that drag him down, he puttered around the house, pushed through it and ended up playing with his RC cars for a bit.

Today was a "bad" day. He woke up in pain, with abdominal cramping, his legs are also getting fatigue (maybe from laying down so much?) and cramped. Actually the cramps in his legs are pretty bad I guess. Like Charley Horse's. We ended up rescheduling for my mom's birthday lunch (more of a remembrance lunch I guess), which ended up being a good thing because Phil is pretty sedentary today.
We did make it out of the house to go to Costco. While we were walking around, I noticed Phil's head bobbing around. I asked him why his head was shaking (like a twitch?) he said he didn't know what I was talking about. I observed him through out the store. The longer were were standing the worse the twitch/bobbing, got. As we were exiting the store, I noticed he was pale and white again.
When we got to the car, he was sweating profusely in addition to the head twitch.
We are taking it easy the rest of the day (which isn't hard because Ava takes her 3 hour nap in the afternoon).

Kind of concerning that there are new issues in addition to the old issues, and that the Clix Plexus doesn't really seem to be helping all that much at this point. Phil seems to think that it has dulled the pain, but he still gets cramps and pain in his abdomen.

PS
So the head bobbing may be a reaction to a sudden stop in medication (recommended by his doctor) or maybe an addition of medication added to his long list of medication. We are hoping in about three days it will stop.
I also want to mention. Most days we are hopeful. We try and keep our head above water. We try and think positive and enjoy the time that we spend together. We hang out most days. While the business is slow, mostly due to my not learning how to actually run the machine, and Phil being stuck either on the couch or in bed.
We make the most of our days. We enjoy each others company.

The purpose of these blogs are to help remind myself of the progress (or lack there of) in Phil's health, also to keep others updated periodically because we seem to be couped up in our own little world. When Phil feels better he wants to get out more and hang out with people again. But since he isn't feeling well, he keeps to himself.
I'll keep updating and once in a while posting the important updates on facebook. Thanks for following and thank you again so much for your prayers and concern. We appreciate it.

A new day

Yesterday I was so proud of Phil!
He got out of bed. He made it to his CAT scan appointment (to get pictures of the polyps in his nose/head so they can remove them on November 2)!
He also printed a few shirts and changed the print head on the machine.
Good job Phil!

He didn't sleep so well so he isn't doing super hot today but he spent some time with Ava this morning before she went to school. He and Ava had fun naming parts of the RC cars.... she's learning new words. And they worked on Phil-on-phonics. Phil is great at teaching her to say words correctly.

Today might be a slow day for Phil, but he seems to be doing a little better. YAY! Progress!

Next week might be the first week in almost a month that we don't have three appointments, actually I don't think he has any appointments next week.

The Pain is back

Phil had his Celiex Plexis last week on Thursday.
We attempted an outting Friday morning which was a major set back. Phil has been in bed pretty much since last Friday afternoon. We went out on Tuesday to cancel his GI Emptying test.

I don't completely understand whats going on.
I guess the pain is gone from the normal places but now he can feel his liver. I'm not sure, I don't normally feel parts in my body, but it must be pretty bad if he can feel specific areas that are hurting.

Tomorrow we go in the afternoon to get a CAT scan done for his nose surgery coming up on November 2 to remove all the polyps in his sinus cavities.

He started his antibiotic today. So I'm hoping in 10 days that some of the pain that still remains (even after the Celiex Plexis) is 60% gone!

At this point, I don't know if Phil will ever be off the medicine, but if they could tell us whats going on, that would be fantastic! :)
I still remain hopeful.
Phil remains asleep most of the day and night.....

Life.Is.Crazy. September 2010

Life. Is. Crazy.
And thats an understatement!
The past three weeks I feel like I have been to hell and back. My grip on reality was wavering last week when I started to feel the post par tum depression come back on. I cried and reached out for help, going to my doctor. I'm so glad I did. I went back on medication which seemed to help steady things out, for the most part, right away. Thursday last week was a really rough ride. But Phil helped me out.
On Friday Phil's life fell apart. Literally. Around 5 am he started feeling a little ill and by 9:30am I was home, trying to convince my husband who was buckled over in pain to let me take him to the ER. Being a dude, he said no. And after sitting there with him, and even attempting to call 911, and his refusal, I had to get back to work. All day my day was filled with calling his mom and informing her of what was going on. By 6:30 I was home. He was still buckled over in pain, and he still wouldn't let me take him to ER. I was trying to care for Phil as well as Ava at this point.
Around 10pm, when I was heading to bed, I asked him again if he wanted to go to ER, but again, I got a refusal. DUDES. I swear!!!
So I went to bed. And exactly an hour and a half later I was woken up by screaming. So I went to find out the source and it was coming from Phil. So I ask him again if he wanted to go to ER and this time he said yes!!!
So I gathered Ava, and Phil and off to the ER we went.
I stayed with Phil while he checked in and got situated in the room. I stayed with him for about 2 hours but then Ava started getting a little fussy so I had to take her home. And I slept as best as I could for about 2 hours.
I kept texting and calling Phil.
I didn't go back to the hospital until about 8am. At that point Phil was admitted to a room and a bunch of testing had been done. He went through 4 IV bags before he was even 50% hydrated again.
Phil had the worst doctor ever. Didn't tell us anything. The RN and CNA were totally awesome taking care of Phil.
On Sunday he was let out. We had NO idea what he had except for dehydration.I saw him at 1pm and he was still in pain. At 1:30 he called me to tell me that he ate a sandwich and the doctor said he could go home. WHAT?!
Well I had an interview with a potential babysitter at 2pm so I told him I would be there as soon as I could.
He went home and at 6pm he slept. He got up from 12am-2am and slept again until about 9am. I had made him an appointment with his primary care doctor. At this point Phil wasn't feeling any better, in fact he was slipping into the pain he was in on Friday. So by the time we went to the doctor he was buckled over in pain in the doctors office. His doctor went over his test results (which they did not go over at the doctors office with us), he had acute renal failure, which means, when we went to ER Friday night his liver, kidneys and pancreas were not functioning at all. The test results were still not right on Sunday when we left which made the doctor really question what was going on and why they let him out of the hospital. So the doctor called the ER and let them know we were on our way back over.
We went back to ER. It took until 7:30 for Phil to get a room. I stayed with Phil almost all of Tuesday and Wednesday and Thursday. Except for picking up Ava I was with Phil. I can't tell you how squirmy I get when I have to sit for more than 2 hours! I was dying!
On Wednesday night I went to the house and met a girl named Whitney, who was interviewing for the nanny job with Ava twice a week. It went really well so on Thursday Whitney came to the house and was with Ava. It was a horrible day. Ava started teething so she was crabby. Our power was shut off because I lost track of time and didn't realize what day it was or how late in the month it was, so the nanny's first day consisted of a teething Ava and the power being shut off. And then I had my parents pick up Ava because I had no idea what time Phil was getting out of the hospital. So finally we get out, we got to Costco go drop off Phil's 8 new prescriptions, and get dinner and go to the house and then totally forgot I gave Whitney the only key I had to the house! OOPS!
Let me back up!
So on Thursday Phil got a new doctor! Finally! In the 7 hours I sat with him, I never saw him. But in the morning before I was able to get to the hospital, Phil saw the doctor and got his diagnosis. Gastricperisis. Which is usually accompanied by Diabetes. We are waiting to see the GI Specialist before we say for sure that he has Diabetes or not but he does has Gastricperisis.
Anyways. Its been a wild week. What a crazy crazy week. I seriously thought I was going to lose my mind today with all the stress from the week.
I have such awesome friends! My friend Cheryl came twice to rescue me! She came for about 2 hours on Sunday so I could see Phil. Then on Tuesday or Wednesday after work she came and she was going to watch Ava while I sat with Phil for a little while but Phil fell asleep so she and I went to Starbucks with Ms A and Miss A. They had a play date. My parents were a life saver to take Ava Monday thru Wednesday and my brother and sister in law were totally awesome letting me invite myself to dinner on Saturday because I was freaking out that Phil was in the hospital.
Seriously, I have the best people I could ever ask for in my life!
Thanks be to God for saving Phil's life and for letting us get answers so we can move forward and move on from here. And Thanks to God for blessing us with a great family and great friends and the right people to enter our lives.

The Long Long Process

It has almost been a year since Phil had his first hospital stay.

We have been through hell and back. We have been to the doctor more times this year (September 2010-September2011) than we have fingers and toes combined. We have had testing, and blood work and two more hospital stays.

We have had family and friends on our side cheering us on.
Doctors shooing us away and refusing to do further testing....
we pushed the limits and we got our way. We are doing more testing!

Well Friends and Family, we may have answers!
Today was the first test (in a about 6 months) that came back abnormal. What does that mean? We aren't sure. But we pushed for more tests and we are glad we did!

More answers will follow. Just happy we are going in a certain direction!

Health Issues

As most of you know, or are well aware that Phil has some major health issues.
After almost an entire year of 3 hospital stays (all lasting about a week), ER visits, more than monthly doctor visits, 3 renal failures, diagnosis of pancrititis, and diverticulitis and .more CT scans than we have hands, MRI's, MRCP's, imaging appointments and more blood work than we'd like to admit to. At the beginning of September we finally got answers! At least, partial answers to Phil's progressive health issues.
He has a bacterial infection in his lower intestine.
So we were so excited! Phil got the antibiotic which was a guaranteed solution for all this abdominal pain he has been having.
4 days into the medicine (which he had problems taking in the first place because he couldn't keep it down), so they gave him some anti-nausea medicine along with the other 7 pills he takes each day.
So 4 days into the taking the antibiotics...his entire face swelled. Not just a little bit. A lotta bit! It was so scary! When he slept, he stopped breathing, so he didn't sleep for about 4 days straight until his face became somewhat normal.
He stopped taking the medicine but now we are back to square one....

So frustrating. I hope they can give him something different. This is just insane.

I love my husband so much. I wish he wasn't going through all this. It pains me to see him suffer.

The Doctor

So we went, we listened, and.....we didn't learn.

The pain, is questionable. The three weeks of laying in bed...not sure what the actual cause is.
One medication is eliminated, three more prescriptions added to the list. Back up to 10 medications per day.
Another antibiotic to hopefully cure the bad bacteria growing in Phil's intestine. Hopefully it will take away some of the pain.
Another medicine to DULL the stomach pain but not cure it. Heart burn medication, an inhaler that should also help with the air passage and swallowing, and some other stuff.

Phil has an appointment to hopefully find some answers about his nasal polyps on Thursday.
Another appointment on Friday.
A GI Emptying test next week.

Blood work in November and another hydrogen breath test to test the bacteria level in his intestines.

So no official answers. More medication. More testing.
All other tests came back negative! YAY!
We are keeping good thoughts and a hopeful outlook that some of this new stuff will work wonders.

Celiex Plexis

We have good good news!

We went to the Ear Nose and Throat doctor this morning. We spent less than 5 minutes in the office and the doctor ordered surgery. We spent a total of 15 minutes in the office and scheduling surgery. Phil is all set up to get his nasal polyps (which apparently have spread to ALL cavities of the sinus and ears, which would explain the loss of hearing in one of his ears).

We are thinking that with this surgery so many things in our life will be different! No more mouth breathing, no more snoring, no more head pressure, no more upset stomach or sore throat, possibly less infections. It might even, miraculously cure his stomach issues or help them anyways.

This afternoon Phil got a Celiex Plexis. Like an epidural but will help keep the pain away for about 2 weeks.

After today, we are super optimistic!
We both feel like we have a whole new out look on whats been going on for the last year or two.
We are crossing our fingers, trusting God and we feel pretty good that things will really start to turn around!