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.
Wednesday, February 29, 2012
Monday, February 27, 2012
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.
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.
Thursday, February 23, 2012
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.
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.
Wednesday, February 15, 2012
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.
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.
Thursday, February 9, 2012
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 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
Sunday, February 5, 2012
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
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
Wednesday, February 1, 2012
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.
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.
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