Since the last time and during my absence, Pat is awake more and sleeping better at night. My parents suggested a week ago or so, to the staff, that she should be placed in a wheel chair so that she could see more than just her room. Mom and Dad have been pushing her around the facility and outside. She still wasn’t showing much in the area of recognition, and was not responding to commands or suggestions, although she can be fed and appears to eat well. She has not said but a few words.

I arrived in Durham yesterday, Friday, and I saw Pat around 12:30 pm, she was sitting in her wheelchair, focused on the TV. When she is focused on the TV, you cannot break that attention, she will not look at you. Soon after she was put back in bed. I spent some time with her and then Dad and I went to a scheduled meeting with the facility staff. The biggest part of the meeting was that, in the judgement of the insurance, Pat has not been improving fast enough in therapy for the insurance to continue to pay for rehabilitation, which includes her stay at the facility. Although we are not happy with the insurance decision, she will stay at the facility and Pat and I will fund it.

After the meeting, I returned to see Pat in the wheelchair, physical therapy had been by to do some work with her while we had been in the meeting. I took Pat for a short spin, and to me, she looked brighter than the last time I had seen her, a week and a half ago. Although not saying anything. I brought her back to her room after a while, she was placed back in bed, and promptly fell asleep.

Today, Saturday, I went to see her in the morning , she was in her bed, about the same as yesterday. Physical therapy came by, and put her in her wheelchair. This is where it changes, she became more animated. I sat beside her, held out my my hand and she gently touched it, very new. Normally you have to take her hand.

And things kept getting better…

After a while she was fed lunch, which was a Reuben , she hates sauerkraut , and was obviously not thrilled about eating it. And when I said that out-loud she smiled. We then went for another wheel chair ride, and during the ride I asked her what she was thinking,  and she said “I don’t know”. We had a few other moments where she said a word or nodded in understanding. I know this may seem small, but it was big for me, I haven’t seen that from her in a long time.

All in all, we know Pat is making progress, however slowly.

Thanks for all your support,

Scott

Pat was released to the nursing facility this morning. She was wide awake and managed to say a few words (“good morning” , “OK”) , she was also able to nod her head in the affirmative when asked a few questions. This is marked improvement from yesterday and the day before that :). They just fed her lunch, and she ate all of it, then slowly fell asleep. Already a long day for her.

She started her radiation and chemo on Thursday, there have been no observable side effects, such a as nausea, at this point. So far so good 🙂

Thanks for your support,

Scott

I’m back in Durham, got in today.

Pat has not being doing as well as we hoped. She had real good day a week ago (a day after surgery), and now is non-responsive, basically sleeping, although she can be fed (Dad fed her today), She doesn’t open her eyes when being fed.

She starts radiation/chemo tomorrow, good news she doesn’t need to be awake. They have taken her NG tube out that was used for feeding (nasogastric) , it had been in too long. If she can’t be fed orally or eat on her own, they will have to put in a direct stomach one (hoping not).

The permanent CF shunt they put in is adjustable, they made an adjustment last night to increase the drain rate and lower pressure on her brain, and we are hoping it helps. Part of what we are hearing is she is awake at night (non verbal, but awake) and sleeping during the day.

Other news, is they are working towards getting her back to the convalescent home for rehab. That could happen as early as this weekend or early next week , depending on her condition.

Thanks for you support,

Scott

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