A Comedy of Errors - But Not so Funny

This story begins on Easter Sunday. Christen had slept with Kathie Saturday night - Kathie woke up 4 times in the middle of the night, but of course, was sleeping soundly during the morning. Bob and Lauren got her out of bed after they returned from Mass to freshen up the bed and Lauren had her sitting in the wheelchair so she could give her a "bath." Kathie's skin is insanely dry and flaking off, so a nice rub with a washcloth followed by a lotion massage seems to make her feel a bit better. After the cleaning, she laid comfortably until right when everyone (Ed, Melissa, Alec, Emily, Christen, Bob, Lauren and Ben) was ready to sit for an Easter lunch (since Kathie had to leave for the hospital by 3). Bob ate in her room, so she could sit up for a bit. Melissa had prepared a wonderful Easter feast for everyone. Kathie laid back down towards the end of lunch - but only for about an hour nap. When Alec and Emily came in to say good-bye, Kathie opened her eyes and talked to them for a bit - proving once again that you have to be wearing a lab coat or be a grandchild to really get her attention;)

After she woke up to say goodbye, she decided she was ready to get up to leave for the hospital - almost an hour earlier than originally intended. Bob and Lauren finished getting her stuff ready to go and Eddie and Bob got her into the car and set up with her oxygen tank. Kathie travels in style - with an entourage of about 5 pillows and 2 ice packs;) As usual, she pretty much fell instantly back to sleep. She has been much more sleepy these days, and is only opening her eyes for very short amounts of time. Instead of talking, she's mostly been using hand signals - many of them rather humorous and cute. She still talks occasionally, but she is usually trying to save the breath since breathing is still pretty difficult.

Bob, Lauren and Kathie had a relatively uneventful drive to Winston-Salem. When they got to the hospital, admissions seemed very aware that she was coming. However, when they said that they were getting a room ready, Bob and Lauren should have known it was going to be a long day. The nurse who had told them to check in on Sunday said to be to the hospital by 4, they were there at 3:30ish. Kathie didn't have to wait long for a room - ironically the exact same one she was in 2 weeks ago, the hangers they brought were still in the closet. Shortly after getting Kathie settled in her bed, a nurse came in to start doing what we assumed was a routine quick check. Instead, she delved into a fairly thorough check over Kathie and asking a lot of questions about her condition. Slowly, but surely, it was becoming clear, she didn't know why they had brought Kathie in. This was quickly confirmed by the doctor that came in, also asking many questions... "So the plueral effusion is the only complaint?" Bob explained his frustration that they didn't seem to know why Kathie was there. Bob and Eddie had made sure Kathie had some lidocaine over where her port is so that if they needed to draw blood or put in an IV, it wouldn't hurt so much... and they waited awhile before they connected the IV to her port - Kathie also expressed frustration.

An x-ray came by with no warning - Bob declined letting them do it because she had just had one on Thursday and they were going to use something like a sonogram to do her procedure on Monday. The x-ray seemed to be more about satisfying someone's curiosity. A little later, a new doctor was on, and another x-ray machine appeared. Bob got slightly more frustrated (steam was not yet being released from his ears) and told the technician and accompanying nurse that no one had yet explained why Kathie needed an x-ray. The new doctor finally came in and Bob once again had to explain why Kathie was in the hospital in the first place. 2-3 hours in the hospital and there was still confusion. Lauren and Bob couldn't believe it... they had been told to bring Kathie in to get her coagulation numbers in the right place (her blood was too thin to safely do the procedure to drain her lung) and no one seemed to even know she was having the procedure done on Monday - it didn't seem to appear on the schedule.

3 or so hours after checking in, Kathie finally had some Vitamin K going through an IV, plasma through IVs scheduled for the morning and someone working on making sure she was on the schedule to have the pleural effusion taken care of. Bob and Lauren were still trying not to rip out their hair as nurses came in trying to give Kathie various drugs and take unnecessary vitals. It took several hours, but Bob finally got some people to understand that the purpose of the visit was for palliative treatment and they had zero interest in doing unnecessary tests or medications. The reason they had her in the hospital was to give her a chance to get more comfortable, not to cause greater unrest! In Wake's defense, this is the first time they've had a complaint with service at all - overall, the experience with the staff and treatment has been first rate.

Lauren spent the night at Ben's folks' house and Bob stayed at the hospital to make sure no one else tried to give Kathie unnecessary drugs, but did give her the right ones. At one point, they had on the "schedule" to give her morphine by suppository - use your imagination to guess the response to that. No, it was nicer than that... but the thought went through Lauren and Bob's heads.

Kathie woke up several times - thank goodness for the guardrails on the bed, because she may have fallen out otherwise the way she flew up. Needless to say, Bob did not exactly get a good night's sleep. The first bag of plasma came at 5 AM... The second around 8 AM, then there had to be a blood test - which took longer to hear back from than we would have liked. It was after noon before we heard that she was ready to go and on the list to have the procedure done. It was almost 1 before she was finally taken downstairs to radiology to do the appx 45 procedure. An hour and 15 minutes after she was taken into the room, she came back to the room.

The nurses seemed very positive, saying Kathie did great, didn't need extra pain medication and had about a liter drained off. Again... little warning bells should have gone off considering the last time Kathie had her lung drained there was significantly less fluid in her lungs and they had drained a liter.... hmmm. Anyway, warning bells did not go off in their heads, and they were told the paperwork was all ready to go once the doctor gave the okay. The doctor came in about 15 minutes later and explained a different story.

Kathie can't seem to get a break. Something (they presume one of her tumors in the lung) was blocking fluid from being drained, and the lung had not re-expanded because it still had a lot of fluid surrounding it. Bob and Lauren were told she would have to stay overnight so they could see if more would drain off overnight (she is attached to a dry suction chest drain that is attached to the catheter- it uses gravity to allow more fluid to drain out). An x-ray will be done in the morning to see if enough fluid was drained off and if the lung reinflated. What the x-ray shows will determine what type of apparatus Kathie will get sent home with; she'll either leave with a catheter and pump like the family had originally been expecting, that they can drain off themselves after a brief lesson, or she will go home with something like what she is attached to now, that will continuously drain. There may be a third option, but it is escaping me at the moment. Of course, Bob and Lauren had already called the family saying it had been a success and they would be leaving soon - but after the doctor left, they had to redo all the phone calls and reexplain the situation (again, why we wait to post sometimes).

There was some concern from Bob and Lauren that they were going to keep her unnecessarily. Since it was for palliative care to begin with, neither of them saw the point in her staying day after day or having more procedures done that weren't going to make anything better for Kathie. After being assured that the x-ray was important to establish the next step for home care, they settled in for the night and ordered Kathie "dinner." (Yesterday she ate a cup of ice cream and some bites of pear... tonight she managed a few bits of the ice cream, a bite or two of tomato soup and a bite or so of applesauce). The x-ray is scheduled for 7:30 AM Tuesday morning. Explicit directions were given to leave Kathie alone during the night unless they were called for if she wants morphine. Lauren is sleeping with her for the night. Bob left a bit after 8 PM to sleep at Ben's parents' house and Lauren got ready to spend the night. At about 10, Kathie woke up for a bit - the first time she was really alert today. She watched a bit of Dancing with the Stars with Lauren and got her Ativan for the evening. She was only up for about 15 minutes. Shortly after going back to sleep though, she woke back up and when Lauren asked her what she needed, she said "Awake." Lauren asked her how she was supposed to keep her awake, afterall, they had all been trying to do that over the last week when Kathie was super sleepy. Kathie made some hand motions for Lauren to talk - she didn't need to be asked twice:) Lauren and Kathie watched a bit of the Bachelor as they "chatted" (Lauren talked, Kathie used hand squeezes, facial expressions and an occasional word to respond) She stayed awake for another 10 or 15 minutes. Lauren asked her if she should keep trying to keep her awake, or if she was ready to go back to bed - needless to say, she went back to sleep.

The nurses have warned that they will be popping their heads in often to check the drain, but shouldn't be bothering Kathie, so let's hope that is the case. Tomorrow will be another long day, no matter what time they leave the hospital.

Posted by Lauren