I just gave consent for Pat to get a permanent shunt for reducing CF fluid in her brain. Yesterday they put in a lumbar drain, which does the same thing and she showed a marked improvement. She has had a lumbar drain in the past, and it also showed improvement. The permanent shunt will drain excess fluid into her belly cavity, the procedure is not unusual, and will help her on her way to recovery. It will also help when she starts radiation as that can cause brain swelling, unfortunately the placement of the shunt will require a 2 week delay in the start of the radiation. The reason for the delay is you can’t expect an open incision from surgery to heal when subjected to radiation.

All in all, this is progress.

Scott

I should have mentioned a long time ago, that we had been informed early on that Pat would have good and bad days, and for those of you who have followed the blog, you already know that she does have both. Today was not such a good day.

Today she recognized my presence when I came in, mouthed a few words, but was very sleepy. They took her for an MRI a little later and when next I saw her she was fast asleep. When they tried to waken her, it took a lot of effort, and she really did not respond to verbal commands.  She did eventually say “OK”, but that was pretty much it.

Unrelated to her condition, I had an impromptu meeting with the neuro-oncologist to discuss plans for chemo and radiation. Although, no definite schedule has been set forth at this minute, everyone is gearing up for the next stage.

Thanks for all your support.

Scott

I arrived back yesterday (Friday) and visited Pat briefly. They had just moved her from the ICU down to a regular room. She was doing better than I expected and mouthed “I know you” after I had said the same to her.

This morning she was doing even better, I brought in a few cards that some of you have sent to the house. After pulling them out of the envelope, Pat appeared to be reading them, so I asked her to read back some, and she did 🙂

One of the cards was from GEGR, this time I didn’t open it, and she opened it just fine. I think she had a kick about the card, something about the card containing a hug. She held on to the card for a quite while.

Tomorrow I will bring in more cards.

Her vitals are doing good and her sodium is back in normal range.

Scott

Well, Pat has not been responding to input for the last 2 days, other than small things, and doesn’t want to eat. Today she was transported for her radiation oncology appointment. The doctors evaluated here and she was sent to emergency at Duke.

My parents were\are there and they will be admitting her back into the hospital. So far what we know is that rather than having low blow sodium, she now has high sodium (170).

Good news is that she is in  good spot and hopefully will bounce through this.

Thanks for you support,

Scott

Hi all,

Pat had some more complications, another infection , this time in her bowels as a result of all the antibiotics. Basically, the antibiotics reduced her normal bowel bacteria (flora) in her bowel and an opportunistic one started to increase in numbers. This is not a huge setback, and is being treated. Pat did make it into the skilled nursing facility (Hillcrest) on Wednesday, and she is showing a improvement trend. However it does mean we have to wear the yellow gowns and gloves when we see her.

As I previously mentioned, I have come back to Norfolk, for the work week. My parents came back yesterday, grabbed some stuff and have returned back to to Durham. We actually waved at each other when our paths crossed on the route, I going to Norfolk, them, returning to Durham. I will be in Norfolk for the week, returning to Durham on Friday.

She has an appointment on Tuesday with the radiation oncologist. This is where we where at, when the infection started, roughly a month a go. So we are getting back on track. Mom and Dad will make sure she makes her appointment.

I have a number of people to thank at this point. Kim Smith for taking care of the pups, Mom and Dad for going above and beyond in support and help. The staff at Duke for taking care of Pat, our friends, all of you  (Specific thanks to Jamie and Carol  for your help with the mail and etc).

Thanks again for all your support,

Scott

She was even better today, I arrived in her room to find her sitting in a chair. The nurse informed me that she had even walked a little bit. She also had eaten all her breakfast herself, without being fed.

We had small conversations and she appeared to be understanding most of it. We had a conversation about her catheter and stupid me thought that I need to explain what it was. She quickly jumped in and said “I know what a catheter is ” .  I also explained to her what the current plan is for her treatment.

What’s next?

The current plan is for her to be released from the hospital to a rehab facility. In the rehab facility she will be transported for her appointments with oncology to have her radiation and chemo. She will be in Durham for around 8 weeks starting next week, but that is an estimate.

We don’t expect her to be in rehab the whole time (maybe a week or 2), when they are satisfied, we will bring her to the hotel, and we will transport her to her treatments from there.

We elected to have the radiation treatments done at Duke due to the proximity of the hospital and doctors who know her case, also to get her started as soon as possible. Another reason is that she can’t do a part at Duke and a part at Norfolk,  all the radiation must be done at one facility due to variations in equipment, so if she should have to go back to Duke in case of an emergency , the radiation treatment would have to be restarted.

I plan to return to Norfolk and commute on weekends as needed. My parents will be here in Durham for the duration.

Thanks again for your support,

Scott

Since the last post , Pat has been on a little bit of a roller coaster. They had to put in an NG tube to feed her medication and food as she was becoming unresponsive. Then they put in a lumbar drain to drain excess Cerebral Fluid (CF/CSF).

Since they put in the drain, Pat has improved greatly, using small sentences, appearing brighter. She was able eat today without the tube, although the tube will remain in place for a while. She is also sporting some gloves that look like white boxing gloves to prevent her from removing any of her tubes.

We hope that this trend continues. We are currently looking for accommodations for her as will probably continue her radiation and chemo treatment at Duke.

Thanks for your support,

Scott

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