A LITTLE BETTER
Philip seems to be a little bit more responsive. Sometimes he will nod his head when asked a question but he is also a little confused, probably from encephalopathy. The …
Category: Philip’s Corner
ABOUT THE SAME
Philip remains about the same. He is minimally responsive on occasion. He is sometimes restless and sometimes sleeps quietly. His kidneys get better and then worst. They are treating the …
WORKING TOWARDS HEALTH
The neurologist came in to say that the final report is in and there was no stroke. We are very grateful and relieved. Philip is very agitated, he is weak …
I THOUGHT YESTERDAY WAS DIFFICULT…
At 7:30 this morning I was walking towards Philip’s room were there were many medical people standing. Very quickly the doctor that had been on duty all week-end approached me …
DIFFICULT DAY
The symptoms remain the same. There is absolutely no improvement. I am getting concerned because he seems to be getting weaker and weaker. Today he had two episodes with vomiting …
WE KEEP OUR EYES ON THE TARGET
Philip continues to struggle with the same symptoms. He is able to get some of his oral medication down, but not on a dependable basis. He started showing signs of …
ONE STEP AT A TIME
Philip was able to get a couple of pills down this morning, The headache is a little better, but the rash looks about the same to me. The nausea gets …
THE SAME
Philip’s relief from suffering was temporary. We were so happy to see him feeling better yesterday, that we didn’t think about the fact that it would be a temporary fix. …
TO THE HOSPITAL AGAIN
It came as no surprise that the physician decided that Philip needs to be in the hospital. We were pretty sure that would be the decision because he has not …
WORKING ON SOLUTIONS
Philip still isn’t feeling well. His headache is better, but his stomach is not good. The nausea is still pretty bad. I am starting to get concerned because he hasn’t …
NOT TODAY
Good news was not in the cards today. Philip remains nauseous and still has a headache. We had been hopeful that his condition would improve so that we could leave …
AGAIN
Yesterday’s increase in medication has been very hard on Philip. He has had a bad headache, nausea and vomiting. As an individual person I know it is all about the …
QUIET DAY
Quiet day for this family. Philip continues to have a minimal reaction with this round of increased medication. Another increase will happen tomorrow evening. We continue to be hopeful that …
GOOD DAY
Philip has done really well with this increase in medication. Last night he was a little nauseous and today his left leg is jumping a little when he sits. I …
UPPING AGAIN
We said good-bye to Issy today. The effort he made goes above and beyond. He brought us all great joy and a little relief from the stress we have all …
GREAT FRIENDS
Most of today was spent with the pump and medication. At 9:00 I mixed the medication and put it in the refrigerator, at 12:30 the nurse came to show me …
AT HOME
We are home. I am glad we divided the days leaving the hospital and driving home. It was not a difficult trip, but Philip is very weak and tired. He …
RELEASED AT LAST
Philip was released from the hospital today. We are spending the night at the SECU Family House because it will be easier on Phil if he divides up leaving the …
ANOTHER STEP
The hospital feels that they have done as much as they can for Philip with this visit. The symptoms from the new medication can be treated with oral medication so …
CLIMBING A MOUNTAIN AGAIN
The difficulties in Philip’s life seem to be piling on.Today it was decided, with our support, that they would increase the medication. We have to move forward, we knew that …
MORE OF THE SAME
Philip’s situation has not really changed. Philip continues to have adverse reaction to the medication. From all we have been told this is just the way it is going to …
REACTION TO MEDICATION CONTINUES
Philip continues to have some adverse reactions to the medication. We are told that his body will become used to the medication and the symptoms will vanish. They have put …
THE PUMP
The process is not going as easily as we had hoped. The medication is causing a bad headache and dry heaving. These are all reactions to the medication. The doctors …
NOT TODAY
We thought today was going to be the day they would put in the central line and pump. When I arrived at the hospital early this morning, they were busy …
PERSISTENCE HELPS
Never underestimate the power of persistence. On the other hand, be sure and have realistic time expectations. Early this morning I was told that it would take at least a …
YESTERDAYS DISAPPOINTMENT IS TODAYS CHALLENGE
Yesterday’s disappointment has become today’s challenge. Philip has been preparing himself for the next set of obstacles and is optimistically and ready to face them. We found out that the …
RESULTS
The procedure went well, but the results were very disappointing. We have another hurdle to jump over and we will. The physicians will need to put in a pump with …
IMPORTANT VISIT
We are back in Chapel Hill. Philip needed to stop several times for the bathroom on the way up. We were not pressed for time so although inconvenient, not at …
GETTING READY
Medical, medical. Today, we simply took care of some of the medical ends that needed to be tied up. We have an appointment for Philip’s hepatitis B shot tomorrow. We …
TEMPORARILY HOME
We are very happy to be home. It is really a pretty easy drive for us but there is no place like home. Philip is unbelievably optimistic. I look at …
GOOD NEWS
Off to Chapel Hill and the pulmonologist. Good news, Philip’s heart looks smaller. The doctor is going to try and schedule him for a cardiac catheterization Monday. It is all …
NOT TODAY TOMORROW
There were no rooms at the Family House, so we will wait till tomorrow to drive up. Our appointment isn’t until 3:00 so we will have plenty of time to …
UNC HERE WE COME
Back to UNC for Philip and me. It is my hope that we will be better informed about the pulmonary hypertension after our appointment with the pulmonologist. According to the …
THANK YOU
I would like to take this opportunity to thank all of the people who have been involved in helping and being supportive of Philip. The calls, visits, notes and outings …
GOOD FRIENDS
Today was a not a day to remember. We just did some catch up on a few things in the house and then ran a few errands. We stopped off …
A HAT
We woke up early and ran to the lab to get Philips prescribed lab work done. The phlebotomist was wonderful; she was able to get the blood on the first …
TRAVEL & NOTE TO PHILIP
Today was all about taking care of making medical arrangements. Early this morning I spoke with our transplant coordinator to confirm where we are going to get Philip’s blood drawn …
FROM PHILIP
I would like to take this opportunity tonight to give some very well deserved gratitude. First to my amazing parents, I want to thank you for being there for me …
HUMOR
Philip seems to be stabilizing. We know he is in end stage liver disease, but for the last few days he is doing fine. He is not well enough to …
STATUS QUO
Philip really enjoys the changing of the colors in the fall so Shelly and I had thought we would take him on a short ride to the mountains. Frankly he …
GOOD DAY
Today was a good for Philip. He had a good nights sleep and woke up with a big smile on his face. My friend Sandra called to say she was …
Phil, None of us knows what life has in store for us, but being able to face the challenges with the grace and dignity that you have exemplified is quite …
HOME AGAIN
We are back at home. The echocardiogram was an easy test and we arrived at home just in time for dinner. Philip and I had a real chance to talk …
OLD FRIENDS ARE WONDERFUL
Being out of the medical world today was wonderful. We went exploring, this is a new city to us both and we found important things like the grocery store and …
OVERWHELMING
It has been a very interesting day. First Philip got up this morning looking as if he lost 40 pounds. I am sure it is all the fluid he was …
ON THE ROAD AGAIN
Philip woke today with less pain then yesterday. He was able to get himself up and walk around without a great deal of discomfort. It was a beautiful fall day. …
AT HOME
What a day it has been…I slept through the first call from the doctor. When I finally reached him he advised me that they were releasing Philip so that he …
CONTINUED PAIN
Philip’s knee pain remains the same. The physicians had thought that it would get a little better each day, but that is not happening. This evening they brought in an …
STILL AT CMC
Philip remains at the hospital, but is in good spirits although he is lonely and board. His fluid retention is getting a little better each day, but the pain in …
A LITTLE BETTER
Philip is a little better, the swelling is starting to come down and the pain in his knees has diminished. He is still taking pain medication but not as often. …