One Journey After Diabetic Coma

(Tricia) It has been three days since Linda arrived at Barnes-Jewish Extended Care, and I have been impressed with the care she has received so far. The place isn't nearly as, well, lively as NHC St. Charles ... if a skilled nursing facility can be described as lively! At NHC, the mood was very informal, with a lot of friendly conversations and joking around with the nurses, CNAs, and therapists. We enjoyed these interactions, but as I've made clear in previous posts, that level of informality had some serious downsides, in that some aspects of Linda's care that I thought were important got overlooked. The mood is decidedly different at BJEC. Everyone is friendly but focused. There is a more serious attitude at BJEC that was missing at NHC. The evaluations, therapy sessions, and intake process have all been more organized and task-oriented. Just as in the first two months at NHC, Linda is once again seeing physical, occupational, and speech therapists daily. She's also...

(Marilyn) Tricia spent all of Saturday kind of overseeing Linda's transfer.  It was pretty stressful.  So I went over this morning.  Linda had eaten her breakfast and physical therapy had been there and had her sit at the edge of the bed for a while.  Then it was a series of staff people who came by to meet Linda and get an assessment. Linda is extremely puffy which the doctor had said was because of all the medications she was on.  He didn't want to give her any diuretics either because it would have been too much.  But Tricia will talk to the nurses tomorrow about trying to do something about it.  Those hospital arm bands are getting really tight.  They came and weighed her and she weighs 211 (at NHC she weighed 160).  The nurse said the extra weight was the water retention.  How awful. The respiratory guy came by and Linda's oxygen level was at 87 and it should be 90 or more. He said if it is still low tomorrow Linda will have to go o...

(Tricia) As Marilyn noted, it has been a stressful few days. Because three skilled nursing facilities had agreed to accept Linda, Missouri-Baptist was set on discharging Linda yesterday . It didn't matter that all three were one-star-rated on Medicare.gov and were woefully understaffed (according to Medicare's inspections), or that one had an abuse allegation. All had received abysmal user reviews. It didn't matter that we did not want to have Linda complete her rehab in such facilities, or that we had zero faith that any of the three would be able to manage the every-four-hour (Q4) antibiotic regimen that had been the obstacle for so many other facilities. As far as Mo-Bap was concerned, a facility had accepted her and that was that.  I felt I had no choice but to appeal the discharge, just to buy us some time. If you are in the hospital as a Medicare-covered patient, the case workers are required by law to tell you every week you're there that Medicare gives you the r...

(Marilyn) A quick update.  Tricia just called me to tell me that Missouri Baptist wants to discharge Linda tomorrow and all but three facilities have refused to accept Linda, for various reasons.  And those three are, in our opinion, unacceptable; however, we are at a point where we pretty much will have no choice.  And one of them is about a 45 minute drive for me.  So frustrating! We have one more that we will check on and after that it will be out of our hands.  This is so stressful..   Tomorrow will be decision day and we will have a better update.

 (Tricia) It has been a relatively quiet weekend in the hospital—the good news is that Linda seems to be in less pain than she was before. The nurses are able to move her from bed to chair and back, using the Hoyer lift, with no trouble whatsoever. She is still in pain when they turn her, but even that seems to be less than before. When I got here tonight, she had eaten her entire dinner and was tired, but comparatively clear. After I was here for about an hour, she began to complain of pain and wanted to go back to bed. But the nurses and I were able to convince her to stay sitting up in the chair for another hour—laying in bed is the worst thing for her right now, so luckily, she was able to make it that extra hour. Once they got her back into bed, though, she was very happy.  “Oh, that feels SO GOOD!” has become one of her catch phrases. :-) More good news: Linda had two good days of therapy on Thursday and Friday, where the physical and occupational therapists were able to...

  (Tricia) Linda is now in her third week in the hospital, not because the doctors say she is not ready for discharge, but because we are in the same state of limbo we were in when St. Luke's wanted to discharge her as she was coming out of her coma. The doctors and hospital say Linda needs to go to a long-term acute care hospital, but the insurance company says they will only pay for a skilled nursing facility. Unlike last time, however, when a single SNF agreed to take her, the hospital can find no facility willing to take Linda as long as she requires intravenous antibiotics (which she will need for at least the next three to six weeks).   So, here we stay. I have spoken with an elder care consultant and a palliative care consultant, and both suggested that I upgrade Linda's Medicare Advantage Plan as soon as possible.  If I had known more about how Medicare works back during the annual enrollment period in November, I would most certainly have upgraded her then. ...

(Marilyn) All I can say is that Linda is doing everything she can to sabotage any possible recovery.  She refuses physical therapy, so Tricia spends HOURS with her trying to convince her to cooperate.  I have no idea where Tricia gets her patience but all Linda does is scream and say "no-no-no!!"  She can be quietly watching TV and when a doctor comes to the door she screams "don't let him touch me."  She has to be convinced that the doctor needs to touch her. The doctors say that if she doesn't get that leg moving it will stiffen and freeze in place and that will guarantee she won't ever walk again.  She says she doesn't care. We are still waiting to see if the insurance will approve Linda going to LTACH.   That's what the last few days have been like. Linda is not able to get to the bathroom so they have to use an apparatus called a Hoyer which lifts her up and she looks like Peter Pan going through the air.  She HATES it!!  I got this photo of...

  (Tricia) I realize that Linda's situation isn't as bad as it could possibly be--but it certainly seems close to that. She has specialists coming to see her regularly--orthopedics, infectious disease, cardiology, and endocrinology. They are tracking her vitals, the healing of her incision, her heart rate, her blood sugar. But none of them can help her--or us--overcome the most detrimental condition of all: Her brain injury. Her brain injury continues to override her decision making, lower her pain tolerance, and cause her to distrust the doctors, nurses, and therapists trying to help her.   I was at the hospital earlier today, when the orthopedic surgeon came to see Linda. When he moved Linda's leg only slightly, she screamed in pain and started sobbing. He came around to the end of the bed and said to me quietly, "Her hip is healing well, and the incision looks perfectly clean. There is no sign of trouble. And, in any case, I only moved her knee, not her hip, which s...

  (Tricia) Ed and I went over to NHC at about 7:00 this morning to clean out Linda's room and release the hold on the bed . It no longer made sense to continue paying for the room when we're so uncertain about what's next for Linda. Leaving was bittersweet because we had gotten to know so many of the nurses and CNAs and a few of the residents over these last seven months. Luckily, one of our favorite nurses was on shift. We have gotten to know her very well, so I was glad we got to say goodbye to her and a few other people. She gave me a big hug, along with the pictures below, which I believe a resident had colored. She told me that the one on the left is an angel to watch over Linda and the one on the right is for me. It was incredibly sweet.       Yesterday I spoke with the hospitalist at Mo-Bap, who said that because Linda's needs right now are so complex, requiring doctors from so many different specialties, he is likely to recommend that she be sent to a long-te...

(Marilyn) I went to sit with Linda this morning and she was mad at the world and told me to get out.  I told her she was going to have to tolerate me because I wasn't leaving.   At one point a nurse came in to get vitals and Linda got very upset and tried to fight with her.  At that point I called Tricia at home and put her on speaker phone and Tricia was able to get Linda to behave.  We had to repeat that several times during the day.  Linda was in rare form.  We heard from one of the night nurses that Linda bit him and got very combative.  She is making it very difficult to care for her. And because of her infection we have to "gown up" when we go in her room.  And if we leave the room to get coffee, etc., we have to take the covering off and then put fresh gowns on when we go back to the room. The infectious disease doctor came in while I was there and he said the wound was looking good.  Then he wanted to know if we have found a facility ...

  (Tricia) Although Linda’s surgery was originally scheduled for 7:30 this morning, they did not come to take her down to pre-op until closer to 11:00. One of our biggest fears was that she would refuse the surgery at the last minute, as she had the hip aspiration on Wednesday. But this was quite different, in that they took her to surgery on her comfortable bed, rather than moving her abruptly to a hard metal table that caused her great pain—much better in every way. When we were talking to her this morning, she wasn’t happy to be having the surgery, but was very willing. Even in her compromised state, she understood that the surgery was a necessary treatment for that pain.  That was a relief. She was in surgery about three hours. Dr. S came out to talk to us afterward to say everything went as well as could be expected. The infection did, unfortunately, go all the way to the joint, so he had to remove the affected tissue, replace the easily removable hardware, and seed the e...

  (Tricia) "Your healthcare team has failed you." Those were the words that the palliative care team--a nurse and a social worker--used when they visited Ed and me in Linda's room on Wednesday to let us know what the possible options are for Linda's upcoming care. The statement both knocked the wind out of me and confirmed my own assessment. Linda's orthopedic surgeon and his team have failed her every step of the way. And while the palliative care team was referring to Linda's hip replacement surgery, I think the sentence applies to every doctor that Linda has had for the last five years.  As Marilyn noted, Linda was readmitted to the hospital after we visited the office of her orthopedic surgeon, Dr. M., on Monday. Her incision started oozing last Thursday, and NHC informed Dr. M's office on Friday. Obviously, this unfortunately all happened just before his office closed for the weekend. When we went to his office on Monday, I don't know what I expe...

 (Marilyn) Again, I can't really outline today's events, but in a nutshell, Linda got lucid enough today to absolutely refuse surgery.  She told everyone that she didn't trust the surgeon and wanted no part of him.  She refused all medications until Tricia convinced her.  And she has unequivocally refused to go back to NHC. The doctors once again are suggesting palliative care and/or hospice.  And at some points today Linda appeared aware of that possibility. So tomorrow is going to be extremely busy doing some nursing facility tours.  They will probably want to discharge her in a few days so we will need to be ready.

(Marilyn) Tricia is still "burning her candle at both ends."  I will try to give you an idea of today but I couldn't really keep up. Tricia arranged transportation to take Linda to the appointment with the surgeon who did her hip replacement so she was at NHC nice and early. The doctor looked at the oozing wound and basically said Linda needed to be hospitalized and we should start thinking of palliative care.  (Obviously a lot went on during the doctor visit that I will leave to a later post from Tricia). The hospital has a limit on visitors so I'm not sure who will be with her today. But in a nutshell, Linda is back in the hospital.  She will get antibiotics and the doctor mentioned the possibility of another surgery.  But the doctor also mentioned that she was fragile.

 (Marilyn) We had a nice lunch today.  The pork steaks were great, but not as good as Mother made. After lunch, Linda was tired and didn't do much talking.  But I was told that when I left she eventually perked up and had some nice conversation.