Pat seems better when I arrive in the morning, being able to mouth a few words. However she still goes into deep type sleeps with some tremors. They moved her to a room where the EEG can be monitored constantly.  She has been missing some meals as we are unable to feed her when she is the sleep state.

On a good note, I received a call from Sentara Norfolk General, and they have her rings 🙂

Scott

Unfortunately after Sunday, Pat has not done so well. On  Monday, she started going into to deep sleeps, for many hours. This continued through Tuesday. They have been able to feed her, however not all the time. She is suffering from confusion.

Her salt level has continued to be low, and from the staff, this appears to be the reason for the issues.

Today, Wednesday July 4th, they were able to feed Pat some of her breakfast. They also removed the drainage lines from her head.

I had a discussion with the neuro oncologist and everyone is worried abourt her condition and too much pressure on her brain caused by fluid build up (Hydrocephalus). She had fluid drawn out by lumbar puncture (spinal tap). Afterwards, for a few hours she regained some faculties. The she started getting sleepy again, and is not responsive at attempts to wake her up (similar to the other days).

She will probably have another fluid withdrawal tomorrow.

Thanks for all your support,

Scott

I arrived at her room this morning to find her brighter and watching TV. This is a marked improvement from previous days. She ate heartily and we were able to communicate to some degree, she even filled out her menu for tomorrow’s meals.

Lab results are back on the infection, staphylococcus aureus and a Gram-negative rod. She has been treated with vancomycin via IV which will continue for weeks after she returns home. Unfortunately this will also delay her other treatments for a few weeks.

Scott

I’ve been meaning to post for a while, this has been a rough week.

It started on Monday with a trip to the radiation oncologist, which was to be her first visit for fitting etc, not for treatment, unfortunately we weren’t able to complete the visit as she she developed a very bad headache, bad enough that she was transported to Sentara Lee Memorial ER. She was released later that day with a script for Vicodin. She did not sleep well that night with headaches still occurring.

Tuesday morning, she got very sick around 5 AM, and became non responsive, I called the ambulance and she was taken to Sentara Norfolk General. She was admitted and stayed there until Thursday evening. My parents and I thought she was improving.

On Thursday she had a fever spike and started to have some drainage. Duke was informed. That afternoon I was notified she would be transported to Duke University. She went without me as I prepared to go.

Friday Morning 2 AM I received a phone call from Duke asking to perform surgery and clean out an infection, which I quickly granted. She was operated on at about 4 AM Friday. My parents and I left Friday morning for Durham (Duke), where we are now. Pat came through surgery OK, and now has lines for administering antibiotic and drainage.

Today, Saturday, she has improved somewhat but has a ways to go to get back to where she was before Monday. They attached EEG leads to her head for the night to monitor for any seizure activity. We expect to be here for most of the week.

On a sad note, her belongings have become misplaced during her Sentara to Duke transfer, this includes her rings and a small amount of clothes, I’m continuing to try to locate them.

Thanks for all your support,

Scott

We had some friends stop by today (Jamie and Carol) , and I recounted a small incident in the ICU the day after Pat’s surgery. It goes something like this ……

<flash back, flash back>

Pat had just been delivered her lunch (I will at some point tell you that Duke is great , the food however… err… no).

On the plate were some recognizable food items… Turkey, gravy, some mashed potatoes, some greens (assumption).. and…

Something yellow.. with the twice the consistency of the gravy.. with a slight scent of thyme…yet the substance had no recognizable structure.

At this time one of the MD’s or PA’s walked to check on Pat’s status. This involves pointing at various things…clock , pen , etc to see if Pat recognizes the item.. and she passes flawlessly on the known items.. except one.

The tester points at the yellow goop on Pat’s plate.. and asks “what is that?” … Pat promptly replies ” I don’t know” …  but I think she passes anyway. Shortly after I  tell the nurse that the test was not fair, as I cannot identify the food stuff either. She responds with ” I have no idea what it is either” (expletive removed for younger audiences).

We determine it is stuffing , we think.

For future reference, be wary of yellow goop, and Pat did not eat it.

(soylent green theorists please keep quiet)

Hey All,

This morning we met for the first time the Radiation Oncologist that will be taking care of Pat. Next Monday she will have a mask made that will be used to hold her head in place during treatment. She will also have a new CT scan to help with targeting the radiation.

This afternoon we met with the Oncologist that will be handling the chemotherapy that will occur in conjunction with the radiation.

It was a bit of long day for Pat, but the separation of the appointments allowed me to get her back home for a bite to eat before the next. Luckily the facility is nearby.

Thanks for all your support,

Scott

Wednesday Pat has a visit with radiation oncology departement here in norfolk, followed by a an appointment with the oncologist. Going to be a long day I think (for Pat). We are also trying to find somewhere to have her staples removed, aparently it is common just to go or be referred to the ER for that

Scott

Hi all.

Some of you have expressed and interest in visiting Pat, and I am very thankful for that. However for right now, I’m trying to keep it to a minimum, for a cpl of reasons. Pat gets tired very quickly and does not recognize that she is tired, and will not not nap (I’m starting to think I should nap). Also, the meds she is on, reduce her ability to fight infection, so I’m trying to limit her exposure , you may not think you have something that will affect her, however, I’m not taking the risk.

I do also recognize that she needs to see our friends, a catch 22, please let me know if you want to stop by, as I would like to have a small chat with you before you do.

Nancy and Sue stopped by today, and she enjoyed the brief visit, and my parenst came by later for lunch. She is pretty much tuckered out now, on the couch with a blanket and two greyhounds standing guard.

Scott

A little more info.

During the last week at Duke, we were informed that Pat does have a grade 4 Glioma. I won’t go into details, feel free to research on your own. The good news is that the oncologists and everyone else were amazed on how much was removed.  We learned a lot in the session with the oncologist, which was more of a teaching session.

Basically, Pat will be undergoing radiation and chemotherapy in Norfolk under the guidance of the oncologists at Duke. Thanks once again goes to friends for helping set this up. My parents are in town and we are working out support options for Pat.

At the oncologist, Pat fell on her way to the elevator, unfortunately I was not around (stupid me, ran to put stuff in the truck and trusted she could make it to another area OK). She is OK, but she did bump the back of her head.

She was a little tired yesterday (Friday), after we got home from Duke, however today she is up and seemingly OK, My parents brought us lunch and we went looking for a place for them to rent nearby.

Once again, thanks to all.

Scott

Well we are back home, and I know I owe everyone a post. Its been a hectic few days. For right now Pat is tired, she hit the bed the moment we entered our house, We are awaiting Kim Smith and the return of our babies (Thank you so much Kim & Mike for taking care of our greyhounds, it took a load off both our minds)

As far as details to Pat’s condition. I will post more tomorrow, when my brain fog clears and I compose a decent post.

As always, thank you for support of Pat.

Scott