Today's events

So Mom, Katie, Dad (dozing on and off), Amy and I all showed up (not that Dad had much choice; I'm sure he would have rather phoned in to this meeting) promptly at 11 a.m. for our meeting with Dad's care team. Around 11:15, the others started to straggle in. Dr. Hiatt was in the middle of a difficult procedure and unfortunately wasn't able to make it, although she was less important a participant than others since she did her job quite nicely and continues to. The real shocker, though, was that the speech therapist didn't show up, evn though she was the one who said yesterday she wanted to meet with us all and could be available any day after 10 a.m.! Irene told us that the SLP was told by her supervisor's supervisor that she didn't have to attend. So right off the bat, things weren't good. In attendance were Irene Boateng, the social worker, Dr. Morad, the attending physician, Julia Greninger from Physical Therapy, Emily Schlein, the skin care nurse, Nicholas Trinkle, the nutritionist, and joining us at the end of the meeting was Dr. Okolo, the gastroenterologist.

First we went through our primary concerns:

• not healing around the GI tube; in spite of reassurances that this will happen, we don't think it'll happen any time soon, if at all
• GI motility problems--prior to his tube surgery, he had no problems digesting and was receiving adequate nutrition to allow him to heal; he has only weakened so significantly since the tube was put in
• ongoing complications--by this I mean all the other things that have hit him (c. dif, bedsores, staph infection, missed medications, etc.) While I realize that most of these are not surprising, they continue to be one of the main reasons Dad isn't in rehab. We've been told since January that he'll be in rehab in a week or two. This hasn't happened, but his care has continued as if this will happen. We need to assume at this point that the complications are the norm and plan accordingly. Obviously our main goal is to get him OUT of the hospital, but at the same time, we can't continue to let him weaken and put off helpful and necessary therapies on the assumption that he'll be out of the hospital soon. This approach has led to two months of decreasing strength, muscular atrophy, and depression.
• Physical therapy and speech therapy--he is supposed to get daily physical therapy by Dr. Morad's request, and instead he gets it about one time per week; speech therapy refuses to give swallowing therapy, even while admitting that it's what he needs along with physical therapy and adequate nutrition

Each of the professionals chimed in when they had information. Dr. Morad responded to the GI issues when she could. She said that she hadn't known until we spoke yesterday about Dad's lack of GI problems in ICU because it is not at all unusual to have motility problems after surgery and while on pain medications. She thinks that the tube itself is not the only cause of the problem since most people handle a feeding tube with no problems at all; in Dad's case, his previous GI problems contribute both to motility issues and to his problems with the tube itself; she suggested that perhaps there is some scar tissue in the area that might be preventing the site from healing. Regarding the ongoing complications, she first got a bit defensive when she thought that I was suggesting she should plan for these things since we don't know what will hit and when. We explained that we completely understand that these things happen in the hospital, and that their response to each situation was entirely adequate (not counting the missed medications that shouldn't ever happen), but our point is that these are keeping him from getting into rehab and without rehab services, he's going to continue to weaken and just get worse and worse. She said that he really needs to get out of the hospital and that at this point what she needs to see is a clear culture for the staph and he needs to get his Metoprolo through his J tube. But she also agreed that with his history, we need to assume that something else will happen to prevent his transfer to rehab so we need to be thinking of what else they can do to improve his situation. She said one thing that may well help is more movement--by getting him moving, getting him upright, his GI motility may well improve. Swallowing therapy will also help--one problem she foresees is if his GI tube is removed at some point and he continues to have motility problems, leading to vomiting, he'll be unable to use his throat muscles to even throw up properly (or swallow the vomit, ewwww), leading to aspiration and extremely dangerous pneumonia. We talked about VitalStim therapy; she knew of it vaguely but didn't know the hospital was a provider. She said she knows it requires a physician's orders and if a therapist recommended this treatment, she'd have no problem ordering it. At the same time, though, even conventional therapies could also be helpful. We lamented the lack of someone from speech therapy at this meeting who could have been helpful in letting us know what was available and what they had the capacity to handle.

Julia, the PT, participated in this conversation. She's new to the hospital as of the end of February and so only knows this case through the charts. She says she understands that more PT is important but they don't have the staff to handle daily PT. She did agree to increase services and says she thinks they can manage five times per week. She checked with Dad about an 8 a.m. therapy time, to which he was amenable. At the same time, she recommended getting Dad in a chair more often. Currently he is sitting for about an hour and a half a day. She recommended twice a day for up to two hours at a time. Irene said the nursing staff would see to this. She also said she would be in a lunchtime meeting with Suzanne and would talk to her about getting swallowing therapy.

The skin care nurse and nutritionist reported on their treatments. Emily, the skin care nurse, said Dad's bedsore is a stage 4 wound. It was recently debrided, but that he needs better nutrition and more movement, more time out of bed for it to heal. There is a realistic danger of the wound progressing to where it affects the bone, which is why she requested the surgical debridement and the change of bed last week. We talked about the bed (Dad indicated a while back that a firmer bed would be better for doing his exercises) but agreed that the current bed seems to be best overall. Nicholas, the nutritionist, said that Dad is currently receiving PPN but will go back to TPN when the infection has cleared. Between this and tube feedings (when they can be restarted) they think they can get enough nutrition in him to see some progress in his weight loss and overall strength. As of yesterday, Dad was down to 140 pounds.

When Dr. Okolo arrived, we asked him if he knew if there was scar tissue that might be affecting the healing around the tube; he said it was a good question and a possibility, but that the stomach acid itself would debride any scar tissue that was there so it wouldn't have to be done surgically. We asked about Dad getting Metoprolo through his tube; he said we could start that immediately and that he would order it from the pharmacist already crushed or made into an elixir (to ensure it was well diluted to avoid having it clog the tube). We asked if he had considered moving the tube to a new site. He said he had indeed considered that but thought the result wouldn't be much better, and possibly worse. He wanted to give the site another two to three weeks to heal before considering a new surgery in a new site. We asked about giving Dad some small amount of nutrition through his tube to keep his digestion going; he said he would order that by the weekend, but in the meantime, Dad was receiving drugs to help the disgestive system not shut down. He also reported that Dad's albumen level was finally showing improvment, for the first time since he had been in the hospital, which indicates that the last two weeks of treatment (new tube, TPN, lipids, etc.) were working.

Emily and Daniel had emailed me specific questions to ask. Most of them were covered in the meeting, but the ones I read from their email were: what is the prognosis, given the hospital's current approach of no swallow and minimal physical therapy? Dr. Morad said that if that approach continues, Dad won't make it out of the hospital. He needs more aggressive therapy while here, and he needs to get into rehab ASAP. We discussed other rehab facilities and told Irene that ANY rehab facility willing to take Dad would be fine with us at this point--we don't have to wait for a particular place to have a bed. She said that right now Levindale is full and has a long waiting list. We asked about other options, if the hospital couldn't provide more aggressive therapy (i.e. hiring outside PT and ST). Suzanne yesterday had told me this would be fine, but Dr. Morad said that she wasn't certain, but she thought anyone who actually provided medical services at the hospital would need to have privileges there. We asked if there was a central authority over this case; who has the right to make decisions and write orders regarding treatment; do other members of the medical staff have authority to reject/override/ignore those orders, and if there are standard procedures to notify the patient and his family of such orders. Dr. Morad said she is the one to direct questions to, although the specialists should be the ones to answer questions under their specialty, with Dr. Morad as a backup if we are having problems understanding or getting through to the specialists. She takes recommendations for treatments from therapists and trusts their judgement, so there shouldn't be an instance of someone ignoring or rejecting orders since she only orders what other's recommend.

At the end of the meeting, I also asked about Dad's mental health and wondered if a psychological evaluation might be necessary. Dad is showing every sign of depressing, understandably so. Dr. Morad said this was a legitimate concern, but that antidepressants would make him sleepier (and thus less likely to want to participate in therapy) and constipated, which we really don't want! She also thinks that much of the depression might go away with a change of scenery.

In the end, what we agreed was that Dr. Morad would continue current treatment under the best case scenario, assuming Dad would be cleared for rehab within a few days, but at the same time would immediately start more aggressive PT (including the nurses getting Dad into a chair twice a day) and the PT would talk to ST about swallowing therapy. Metoprolo through the J tube would start tonight, and feeding through the tube at a small amount by the end of the week. PPN will continue, with TPN as soon as the infection has cleared. Irene will look into other rehab facilities who can take Dad, and I will take on calling first Paula Leonard and then work up from there to find out what I can about why the SLP didn't come to the meeting (or was told not to come) and press our case for swallowing therapy.

And now I have to go feed my family and take them to Literature Night at school, so I'll update on my conversation with Paula Leonard later. I'm going to put that conversation report in a new entry. Call me paranoid, but at this point I don't want to be editing posts about these meetings and conversations because I want a clean record of what I wrote when in case we need to refer to it later!