Judie P's Surgery

[Judie P]

Good afternoon everyone,

I'm Joseph, Judie's husband writing on her behalf. All times mentioned are PST as we live in the Bay Area of CA.
She was originally scheduled to be dropped off at 7am for with a surgery start time of 9am but we got a call late yesterday evening that she was bumped up to a 5:30am drop off and a 7:30am start time.

Just received a call at 1:15pm by her neurosurgeon that she is now in recovery and that all went well. She was able to move all of her fingers and toes and now we wait for the next 1hr and a half or so before she is taken to her room. I will give another update later tonight.

Cheers,

Joseph

[Linda196]

Wonderful news so far, Joseph, Thank you for updating us. This must be a very stressful day for you as well. Just know all of your family here at Sjogren's World is sending best wishes!

[Judie P]

Good evening everyone,
Finally getting a chance to give you an update, since this afternoon. Judie is finally resting comfortablish now that she is in her room. I say that because it took almost 5 hrs to get her a room after being in recovery. Due to the onslaught of orthopedic cases for a variety of reasons, rooms are hard to comeby. John Muir Walnut Creek has a specific wing with specialty rooms and beds for these procedures so it took a while for one to be assigned let alone cleaned for her to move in. Good news is that she has a private suite. 
The hard part is that at the moment she is absolutely miserable and in a lot of pain. (To be fair, not unexpected due to the type and extent of her surgery.) Once I was finally able to visit her, I was able to get squared up in her bed and a little more comfortable. I got them to administer some more pain meds and I was able to help her eat a little dinner. Afterwards she was drifting off to sleep and I'm hoping she will feel a lot better in the morning. (I should also note that she was a bit incoherent as she was drifting in and out.)
Thanks to all of you for your responses. I have been reading them but because there have been so many please don't be offended you don't get a response. Just know your encouragement and kind words are not going unnoticed.
Cheers and good night,
Joseph

[Judie P]

Thanks Linda.

[meirish]

So glad to hear that things are looking good. She has had to wait so darned long to get this procedure over and done with. She knew there would be pain but once they get the pain more under control the days will be better. She will also be happy when she can get up some as she has been so concerned about the bodily physical effects of the surgery. Tell her "Hi" from meirish and that I am thinking of her. Thanks to you for giving us these great updates. Hope for good nites sleep for her. meirish

[araminta]

Thank you very much for your posts, Joseph.   Please give Judie my very best wishes for a good recovery.   I hope you are looking after yourself too at such a stressful time.

[Judie P]

Good afternoon again,

Sorry for the late update but a lot has happened since last night. Judie has gotten her arm strength and grip back. Additionally she has lost the numbness in her feet, her tremors have lessened and her indigestion is gone. On the flip side, her voice is hoarse and she has a slight cough. However, both are normal and to be expected from the procedure. Other good news is that her pain has reduced to the point of being semi-tolerable. She mentioned that just getting her grip has made her feel so much better and excited that she had the procedure done.

She has had many medical related visitors including a case worker. It seems there is the possibility that they may keep her in the hospital for up to two weeks. The reasoning is that her particular operation was so extensive that they want to train her to be able to take care of herself before she comes home. However, another possibility is to send her to a rehab center (unfortunately in our area they are not very good bizarrely enough). If that is the case, then she will be coming home with me instead.

Speaking of home, I was doing a bunch of errands to prepare for her eventual return. Part of that was to purchase a toilet seat with bars which adds an extra 5", a couple of pull up bars for our shower tub, and a new curtain to replace our bedroom door. Because we live in an old single wide mobile home the hallways are very narrow. To help her get around easier, I'm taking down the doors to our bathroom, bedroom, and hallway. Well Judie just found out from her case worker that they will be supplying all of the items I just purchased and a new walker. Well I was raised as a Boy Scout and our motto was always to be prepared.

Lastly, Judie has been getting plenty of rest in between getting up and walking around quite a bit. She also is constantly getting massaged by the leg wraps they put on her. It seems every five minutes they come on. They are a new device being implemented to prevent blood clots from forming. Again we thank all of you for the many well wishes and good thoughts. They are making a difference.

Cheers and warm regards,

Joseph & Judie.

[Judie P]

Good evening everyone,

Here is the latest...

We won't know till Monday as to when and where Judie goes next. In the meantime, she is down to only one IV. Her incision looks good and her drain will probably be removed tomorrow. Overall she is looking and feeling much better although of course her neck pain is kicking in as expected. The biggest issues/challenges are learning how to do things with her neck immobilized. As she is fond of saying, "it's an adventure". She has been cracking jokes to keep herself and the staff amused.

As a side note, the nurses have been complementing Judie's haircut. Evidently the people who shave a patient's skull before surgery do a lousy job. In Judie's case, she had it cut by Kelly Sumerall (Youphoria Hair Salon), who not only shaved the back but left her top hair long enough to hide it. They have been saying that the hospital should hire her to replace their current skull shaver.

Lastly, Judie has been getting great meals, so is being well fed.  In fact, she ended up getting a surprise dessert of rice pudding. For those of you who may not know, today was her late friend John Cuneen's birthday and rice pudding was his favorite. The universe works in mysterious ways....

Cheers again,

Joseph & Judie

PS: Thanks again for all of your messages. I have read them all to Judie and she and I are very grateful for your well wishes.

[Judie P]

Good evening everyone, it's that time again for another update...

Judie is continuing to do really well. So well in fact that she most likely will be discharged either tomorrow evening or sometime Tuesday. It all depends on when the drain from her incision is able to be removed. She will be coming home as opposed to staying here for rehab or going somewhere else.  She is doing too well for either, which is a good thing. She continues to receive great food and has been very absorbed in her meditation music/videos. The respiratory therapist said her lungs sounded great.

On a sour note, the communication between staff members has been severely lacking, which has made receiving contradictory information a constant. The other is that they have not always kept up her correct schedule for getting meds, which has not helped with her pain management.

Cheers,

Joseph & Judie

[meirish]

Thank you so  much for keeping us updated.... so glad you will get that equipment paid for. Sounds like she is doing much better than she expected and that they are working on her rehab a little every day. Yes, communication is not always the best in hospitals. I'm a retired nurse and communication is always an issue when large amounts of staff with intense medical problems and orders are the norm. Everyone has to keep on their toes that is for sure.

So glad Julie can go home as it is so much better to be home and healing seems to go faster as we feel more comfortable and safer in our own home. It is also easier and better watching TV at home as you don't have to look up to see the TV set or lay is those darn beds. Have a Merry Christmas and stay warm. meirish

[Judie P]

Good evening everyone,

Apologies for both missing the update for yesterday and for a late update tonight.  Here's what's been happening....

Judie was released from the hospital early yesterday evening to come home. As I had mentioned in my previous updates that Judie didn't always receive her pain meds as ordered. In fact I only found out when Judie got home that there were at least two - three instances where she went 12 hours before receiving a dose. On top of that, they overworked her both yesterday and the day before, to the point that after the car ride home she was in rough shape pain wise.

I haven't gotten much sleep as her pain meds are every 4 hrs and the others every 8 hours (which is one of the reasons I hadn't talked with or written to anyone till now).  The good news is that she is back on track, the bad news is she has been absolutely miserable. She is not able to use the walker they provided us because our interior entryways are only 22'' wide plus it has been difficult to get her into the right position in the bed. Luckily the bathroom isn't that far from our bedroom. However, I think we have finally gotten ourselves into a good routine. Thankfully we have an appointment with a registered nurse and physical therapist tomorrow with an occupational therapist and an at home health aide to come later. I believe we will be seeing all of them twice a week for the next three weeks.

I'm not going to lie, this has been a lot more challenging than I thought it would be. My biggest fear is somehow causing Judie to lose the benefits of her operation by mishandeling her in some way. As a result, I needed a beat to get my bearings, which is another reason why I hadn't reached out to anyone or answered my phone. (Judie's phone has been off to let her rest). I will let all you know what we find out about from the visits tomorrow. Please feel free to respond as I do read them all to Judie.

Cheers, Happy Holidays, and thanks again for your support and understanding...

Joseph

[Judie P]

Good afternoon everyone,

Thank you again for all your great responses, it has helped believe me.  Alright, where to start... She is doing much better since the PT was here. She sat for almost an hour on the couch and that helped a great deal. The PT (who has extensive experience working with patients from this type of surgery) examined her and mentioned that everything looked great and that her incision was healing well. She is seeping a little from the incision but that is both normal and expected. She gave Judie some exercises to help build up her arm and leg strength and observed her walk and felt she was doing really well. The best part was that she pointed out that Judie's new walker wheels could be turned inward (how I missed that I don't know). This now allows Judie to safely pass through our narrow entryways and finally travel the rest of our house. So all of that is 1000 percent better.

Judie's been getting her medicine on the dot as required which is also helping with her pain. However, what has been interesting is that her drugs have been causing her to go in and out of trance and kick in her channeling abilities. It has been quite interesting to hear her talk in her sleep and try to hold a conversation with her as she jumps from one reality to another. That said, we are both doing much better today and I'm feeling much less overwhelmed. Thanks to all of you who sent me words of encouragement, regarding my caregiver abilities, it has helped to keep putting one foot in front of the other. In fact, I'm feeling a lot more confident now knowing that we didn't screw up her surgery after getting her home. By the way I'm finally getting some sleep even if it has been interrupted.

Lastly, I should give some more context as to what happend at the hospital regarding her meds. The way John Muir Walnut Creek has it set up regarding patient care after neurosurgery and the like is two wings on their 4th floor. The first is the specialized wing where Judie was and then across the hall is Acute Rehab. I couldn't tell you the exact number of beds in either wing, but I do know that Judie's was probably 20-30 beds, maybe 40? The other I suspect is the same. It looked like they had 2 - 4 RNs for the entire floor with a number of assistant nurses who give out the medication, bathroom aid, etcetera. The problem is the nurses were the ones who pointed out that Judie wasn't getting her medicine when she should have. Even though her chart instructions stated that not only when Judie should get medication but that she should be awakened if  needed to administer them to her. Again, it seems that they saw she was sleeping and decided to take it among themselves to not wake her, (another example of their lack of communication with each other). Whomever the nurse was in charge would get very upset when they noticed and they pointed it out but it just kept happening.

In any case, she's good now and all we can do is keep moving forward.

Thanks again and cheers,

Joseph

[meirish]

So glad Julie and you are having a better day and life is on the upswing. Especially with Christmas day coming.

Not waking a patient up for pain meds is something that is struggled with often. In all sorts of training nurses and medical professionals are taught that anyone receiving pain meds on a timed set up basis need to be awakened. If the order reads prn in any place that means "as needed" and usually isn't on an order for anyone with bad pain whether a surgical patient or one with chronic pain.

If a med is written on a timed basis they patient should be awakened up and they do have the right to refuse it. However it needs to be explained to them that it is hard to maintain pain control if the timed med administration is messed with. Lots of words for something that you don't have to worry about as Julie is home. Yeah!!!!! You are both doing a good job as a patient and as a care giver. Being a care giver is like being a new mother. You can read all the books, but until you do the hands on you really don't understand it. lol Good luck and stay warm. meirish

[Deb 27]

Please let Judie know we are thinking about her and wishing her a speedy recovery.

Thank you for the updates.

Hope you two have a good Christmas!

[Judie P]

As for Judie, well it has been interesting.  Unfortunately Norco, which she has had in the past without incident, caused her to have hallucinations and just amplified her brain fog, a symptom of her Sjogrens. On Thursday evening her at home care nurse and I attempted to reduce the effects while continuing her pain management by reducing her dosage and at first it worked. However, by the time he saw her early Friday afternoon her symptoms had increased. He put a call in to her surgeon's office but they had already left for the Holidays. He was transferred to the doctor who was supposed to be on call but they were out for lunch at the time.  A message was taken for them to return his call but they never did. In the meantime, the nurse mentioned cutting the pills in half and giving them every 4 hours based on her pain and instead she could only go 3 for the first couple of doses then I was able to go 4, (which he said was fine). She finally became more lucid but still was having issues. He mentioned that if we didn't hear back from the doctor then I might have to take her to Emergency. (Unfortunately, any Holiday is the busiest for them.)
Well by Saturday morning, she was doing much better but had developed a slight cough. When I took her temp that morning it was normal but by 12:30 it slightly spiked when I helped her back to bed. I noticed that she was having slight chills which prompted me to take it in the first place. I took it 4 more times and got the same reading of either 99.8 or 99.6. Her hallucinations, which I thought we had gotten under control. were back but at least not as full blown. At this point she had become lethargic with glassy eyes. Called the advice nurse who recommended that I call 911 for medical transport. By the time the paramedics came out, her temperature was back to normal but her hallucinations had increased. She had stopped receiving any meds since I had put her back to bed.  
She arrived at the hospital around 4pm but the doctor didn't see her until after 6pm (circling back to my prior comment as the reason for the delay) She ordered Oxy for the pain, had an Xray taken, and ordered labs to rule out infection. Four different nurses and lab techs attempted to draw her blood including using ultrasound but couldn't find a vein due to her being dehydrated. She was then put on an IV drip and finally they were able to succeed, Thankfully, her labs came back with no infection and the x ray of her lungs looked good. The doctor mentioned that by this time it was normal for a post op cough to develop at this point after a major surgery due to the anesthesia. She also ordered a cough suppressant, pedelight, and another Oxy before being discharged after 12:30am Christmas day, The hallucinations had stopped but her discomfort was high due to everything having worn off. To say that we both were exhausted by this point would be an understatement. 
At 10:15 Christmas morning, I made a run to the CVS pharmacy in Walnut Creek because they were the only one open for her new prescription. Judie was fast asleep, so I took the chance I could get there and back before she woke up which I did. However, I was nervous the whole time that she might wake up and need something before I could get home. Luckily that didn't happen and I gave her the next dose and got some sleep.  We both got up late, ate and she did some of her exercises. After being up for about 4 hours we both went back to bed to continue to rest.  Got her up later, ate again and continued her exercises. The good news is despite all of the setbacks, she is back on track, getting stronger, finally lucid and back to being herself again.
I know that was a lot and I'm hoping in the not too distant future, Judie will be able to give these updates herself. Again I thank all of you for your responses, your support for both of us has been immeasurable, 
In the meantime, Happy New Year to all of you and yours!
Cheers,
Joseph