One Journey After Diabetic Coma

(Marilyn) Today was Linda's birthday.  Ed, Tricia and I brought food, balloons and gifts to NHC and we celebrated Linda's birthday in her room.  She was crabby and after looking at her presents and eating her meal, she went to sleep and slept all day while the rest of us watched football. She constantly asks to "go home" and says she will do whatever it takes to get out of there but then will refuse to work with the physical therapists.  She gets quite mean and combatant.  Brain damage is so weird.   This morning she was crying and told us that she is being so mistreated.  We asked her how they are mistreating her.  She says they make her get up.  We tell her that's part of the therapy to get her walking again.  She says no, it's not. (If we tell her the sky is blue, she says no, it's not.)  She says they push her around in the bed.  We tell her they need to do bad-baths.  She says they tell her what to do and she does not want to be told what to do (that&

(Marilyn) Now that Linda is back at NHC, we are trying to get settled into their routines again.   Linda had one day where she just chit-chatted and sounded very normal.  That filled us with hope. But today she was in la-la-land again.  She became quite violent with the physical therapist ( hope this doesn't affect future therapy).  She said she didn't want to eat but when they put her food tray in front of her, she dug in. She had one shoe on and one off and said she liked it that way, wouldn't let anyone fix it.    There's more but you get the picture.  She makes it VERY hard to help her.

(Marilyn) I went to visit Linda this morning and boy, she was a different person.  Don''t know why, but she was lucid and friendly and talkative.  She was slightly loopy but for the most part she was kinda/sorta the old Linda. She didn't complain of pain and said she would cooperate with physical therapy, etc.  I hope Tricia gets the same Linda when she goes tonight.

(Marilyn) Well, Tricia tried everything she could to talk to administrative-type people and they dodged her all day.  And around 3:00 Linda was whisked back to NHC, kicking and yelling all the way.  As I write this, Tricia is with her into the evening hours to make her feel back "at home" again. LOL. Then Tricia was able to arrange a "Care Plan" meeting at NHC for Thursday morning to try and get to a point where we are comfortable with everything that goes on during the day. I will go visit tomorrow morning.

(Marilyn) I spent the afternoon with Linda today.  I was told that she didn't get physical therapy in the morning because she screamed at the therapists and they weren't able to get her to cooperate. However, when I got there she was calm and alert.  Her conversation was nonsense but she swore she wasn't in any pain.  It's so hard to know when she is truly in pain or when she is just sort of "anticipating" nonexistent pain.  Still not sure where we will take her next.  Tricia tried to make a bunch of phone calls today but got nowhere.

 (Marilyn) I spent the day with Linda at BJC.  She was impossible.  She screamed "in pain" every time somebody looked at her.  She refused to take medications.  At one point her heart rate got up over 200 and there was a stampede of hospital people high-tailing it to Linda's room with lots of equipment.  After 30 minutes or so they got her heart rate back down and the emergency people stood down. They took x-rays of Linda's back and found that she has a compression fracture of the spine.  And they are unable to say if it is a recent fracture or one that happened a while back.  She also has a bed sore on her back that is extremely painful.  And since she can't roll over it's hard to relieve the pain. At times it seems like she is intentionally being difficult but then we remember she has brain damage, so who knows what's going on.... Interestingly, if I got Tricia on the phone with Linda, somehow that made Linda at least get more reasonable.   They think th

(Marilyn) Tricia stayed with Linda for HOURS yesterday and would probably have spent the night if they would have let her.  During our conversations we realized that we THINK Linda hasn't been getting one of her heart medications.  Tricia will probably figure that out today but if that is the case, OMG,  Tricia deserves a medal for her superhuman efforts in Linda's behalf. In the meantime, I had a good night with my doggies.  If they keep behaving I think I will try to visit Linda tomorrow.

(Marilyn) I can't keep up with everything that's going on.  First, our cousin Pat died last week and she was so worried about what would happen to her dog when she was gone.  So today I went and got the darling little girl.  She is the same kind of dog as Toto in Wizard of Oz.  Her name is Allie.  And I will be spending that next few days getting her indoctrinated in with my animals.  So that means I can't go to nursing home. The nursing home has not been following up with therapy for Linda's new hip and it has been infuriating for Tricia.   It almost feels like they would prefer that we just leave.  We will look into that again. However, Tricia just called me to say they are taking Linda back to the hospital because her blood pressure has dropped dangerously low. I guess that's pretty much whaat I know right now.  I don't think Tricia will be able to update the blog for a while.So I will write whenever I have info. I am attaching photos of Allie and her meeting

  (Tricia) We received word that Linda would be discharged from Mo-Bap Monday evening. She arrived back at NHC back sometime after 6 p.m. on Monday.  Ed and I went over to Marilyn's for a brief visit, before heading to NHC to see how Linda was doing. Not surprisingly, Linda was still in a lot of pain. Because she was still shaking off the effects of the anesthesia used during surgery, her memory and orientation were still very confused--she could not remember having had surgery or breaking her hip. And she was understandably upset that she is once again completely at the mercy of nurses and therapists to get up and down.  When we arrived at her room last night, she was slumped over to the side in her wheelchair. We found out later that the physical therapists should have put her in bed that afternoon, but instead she was left sitting upright, even after being given pain medication that made her very sleepy. This time, she said she was aware that she had broken her hip, but because

(Marilyn) I spent the day with Linda and gave Tricia a break.  Tricia has spent most of her days taking care of Linda.   Linda was sleeping when I got there but woke up around 11:00 and for a while she didn't recognize me. She was sitting in the recliner and looking very groggy.  When the nurse came in to take blood to get a sugar reading, Linda got very agitated and I had to help hold her arm down so the nurse could get a little drop of blood.  That's never happened before.  Strange. Then later when they needed to move her from the recliner they had to use one of those "lift" things since Linda can't really stand up yet, and Linda went crazy, yelling "No, I won't do it, you can't make me," etc.  She acted like they were killing her. It was awful.  She actually bit the nurse.  She had said there was no pain but within in a few minutes she was yelling in pain.  Some oxycodone calmed her down and I took that opportunity to sneak out. On another not

(Tricia) Linda's surgery yesterday got off to a rocky start. As Marilyn mentioned in her last post, they had told me that her surgery was scheduled for 12:30 pm.  I got here at 10:30 am expecting to offer Linda support, sign the consent forms, and even discuss the surgery in more detail with the doctor. Instead, I arrived at 10:30 to find Linda's empty room. A nurse let me know that Linda had already been taken to surgery 30 minutes before. I hurried down to the surgery floor and arrived just in time for them to bring me back to see Linda in pre-op. Only then did I speak with the orthopedic surgeon doing the procedure.  The day prior, I had spoken with the orthopedic doctor on call at the time, who advised that surgical intervention was the best way to stop Linda's pain and for her to regain her mobility. He said that she would likely be able to restart her rehab in earnest after two weeks of doing targeted occupational therapy specifically designed to help her recover from

 (Marilyn) I'll tell you what little I know and Tricia can fill in the blanks later. Tricia was at the hospital alone today because of their rules and because she is Linda's Guardian.  It's so stressful for her. Yesterday she was told that Linda would have a full hip replacement at 12:30.  So Tricia got there at 10:30 to be sure to be with Linda before she was taken to surgery. When she arrived they were already prepping Linda to head to surgery.  VERY disappointing that they couldn't be bothered to let us know about the change in time. Then he says Linda will be getting a partial hip replacement rather than full.  And the recovery of just two weeks that we were told, the rehab will instead be longer.  Again, without any previous explanation or notice. Tricia will fill in details when she is able to.  Right now she is with Linda in recovery. Hopefully in a few days we can calm down from our extreme disappointment in this doctor. More to come...

 (Marilyn) I drove over to Missouri Baptist today to visit Linda.  First I went to NHC to get her some clean clothes along with her glasses.   When I got to MoBap, Linda was sleeping so I sat there and read a book for a while.  Eventually she opened her eyes and she didn't recognize me.  That was to be expected since they had given her some oxycontin for pain.  We chatted for a little while and she is scared to death about the prospect of surgery.  I feel so bad for her.  The nurse came and told me that MoBap only allows one visitor a day so Tricia and Ed and I couldn't even switch off during the day.  So for the next few days it looks like the only person by Linda's side will be Tricia because Tricia is Linda's Guardian.   Stay tuned for more updates.  Not sure how long they will keep her after surgery.

  (Tricia) Unfortunately, the doctor is recommending that Linda have surgery--a hip replacement. He explained that when patients with this injury who are also in her age group forgo surgery and instead wait for the bone to heal on its own, the prognosis is not good. The process of healing on its own can take weeks or months, and because these patients remain bedbound and in a great deal of pain in that time, they most often decline very rapidly within the first year. But with immediate surgical intervention, he explained, patients most often regain some mobility in a day or two. They are in much less pain, can engage in physical therapy, and generally have a recovery time of around two weeks. He acknowledged Linda's complicated medical situation, but said that the surgery will give her the best shot at continuing her recovery.  This is obviously incredibly scary, and I wish she did not have to go through this. I will do a bit more research, but we realized going in that a long, pai

  (Tricia) Even though the x-ray had come back clear after her fall, Linda was in so much pain in her right hip that NHC's nurse practitioner suspected there might still be a fracture. She called yesterday afternoon and told me that, to get the fastest diagnosis, she recommended that Linda go to the ER to be evaluated. Linda was transported to Missouri Baptist at around 5:30 yesterday evening, and I met her there. Over the next six or so hours, she was scanned, poked, and prodded, and while she was OK if she didn't move, she was in great pain every time they had to shift her, poor thing.  But after two x-rays showed no fracture, the doctor ordered a CT scan, which showed a nondisplaced fracture of the right hip. We actually weren't surprised, because given the pain she was in, it seemed far worse than a bruise. When she got to the ER, they also noted that her heart rate was sky high, and they had trouble bringing her heart rate down with her usual medication for atrial fibr

  (Tricia) I noted at the end of my last post that NHC had called to let me know that Linda had fallen again. According to the nurse, Linda had walked to the hall (without a walker, of course) and sat in one of the nurse's chairs near her doorway; then, she decided she needed to walk around, and that's when she took her tumble near the nursing station, apparently right in front of the facility doctor. When Ed and I visited her tonight, she was crying and saying she was in a lot of pain. Her right hip, she said, hurt a great deal every time she moved. We were almost certain that this time she really had broken a bone as a result of a fall. Although Linda was crying, she asked us, "Aren't you glad you came to visit tonight, so you could be here to hear all of this?"  She might have been in pain, but at least she kept some of her sense of humor. :-)  The mobile X-ray technician didn't come until around a quarter until 9:00, and initially the X-ray was inconclusi

 (Marilyn) Well, I just heard from Tricia.  When she showed up at NHC tonight, she learned that Linda had a pretty bad fall today and really hurt her hip.  She was being the old obstinate stubborn Linda and not listening to what she is supposed to do, such as walking without her walker.  The nurse sent for the mobile x-ray guy and they are waiting for him to arrive to see if anything is broken.  Linda is in a LOT of pain. I will post updates as I get them.  We hope-hope that nothing is broken but her level of pain is not encouraging. PS:  I just realized that Tricia already posted about Linda's fall so she will do the updating.

(Tricia) As Marilyn's last post implied, Linda's last few weeks have been up and down. She is still very confused, especially in the morning. But she's also a bit more reachable--when she asks where Mother is, for example, we have started simply telling her immediately and calmly that Mother has passed away. Whereas before, she would begin crying, she now gets a pained look on her face, but says, "Oh, that's right." When given gentle reminders, she is accessing the memory more and more. Last week, Linda had an appointment with a gastroenterologist (finally!), who has suggested Linda go on a dairy-free diet for the next couple of weeks.  It's hard enough to make Linda's meals at the facility low-carb, and going dairy-free has added an additional challenge!  But I now have a new approach: I take a Sharpie and mark out everything I do not want served by mistake, and I circle everything we want her to receive. Marilyn, too, recently expressed some frustra

 (Marilyn) The photos (courtesy of The Little Sensory Company) will tell the story better than me.  These memes reminded us a little of what we’re going through with Linda, especially in the morning or when she’s tired!  They were originally shared by parents on  the Little Sensory Co.'s Facebook page .

 (Marilyn) The day after Linda''s outing to Tricia's house, Linda told me that it was an awful day and she never wanted to do it again. She said that Tricia and Ed drove her all over in circles and it took hours to get from NHC to Tricia's (actually it's about 20 minutes). She is so darn contrary.  Yesterday she told me to get out.  We do the "Mother" thing every day.  It's exhausting and she seems to be battling in her head and it's so sad.  She says she has to go to the bathroom and then when the nurses comes she says she does not have to go.  Then after the nurse leaves she gets herself into the bathroom and gets stuck and needs to get nurses to come running to help her. Like I said .... exhausting.   Then she goes down the hall and tried to pull some lady out of her recliner. As you can tell, Linda is usually one way with me in the morning and another way in the evening with Tricia. Today we took her to a gastroenterologist and he is going to c

(Tricia) I know it has been a while since I've posted. With so much going on with work and Linda's care, I've let the blog get away from me! (Thank you, Marilyn, for continuing to share updates!)  But it's been a whirlwind couple of months. Linda has continued to improve, slowly but surely.  Last week, we went with Linda to an appointment I had made with a neurologist. It was the first time Linda had seen a neurologist since she left the hospital in July. After the exam, the neurologist said that he is going to order her MRI scans from St. Luke's to see what they show. Like other doctors, he said that he believes something else had to have happened (such as a stroke or seizure) for Linda to have been so negatively affected, given where her sugar levels were when the EMTs arrived. He also prescribed a drug that he says has shown promise in helping patients suffering from brain injury improve their cognitive function. We'll wait and see if it has an effect before

 (Marilyn) HAPPY NEW YEAR! Tricia and Ed experimented with taking Linda out today for a trip to their house for lunch.  They came by my house as kind of a drive-by and I took my dog Sassy out to say hello.  We didn't bring her in because we didn't want to test the getting-in-and-out-of-car thing too many times on the first time.  Linda kind of remembered my house but she wavered a little bit.  Tricia said that getting Linda into the car at NHC was smooth and easy.  What a great improvement.  I hope this keeps up.  So it looks like Linda is doing well with mobility but the mental part still needs time.   She still has the need to be contrary even in the face of proof.  When they pulled up in front of my house and I went out to the car to stay hi she tried to say that I wasn't Marilyn.  And she insisted.  LOL! I will enter another blog whenever I get a report from Tricia as to how the rest of the day progressed.