Saturday, January 14, 2006

CT scan OK, Low fever & headache, SNF visit

I found out today that I gave the wrong phone number to Denise's bed in Thursday's post. The correct phone number is 626-535-6081.
There was fever up to 99.6, lowered to 99 by the time I left the hospital tonight. She was also complaining of headaches today, which I don't recall happening since she went into the hospital over the summer. Jacob had a fever & cough earlier this week, so we're hoping that Denise will just have a milder version of that instead of anything nasty. The ID doctor will keep an eye on things. He told me today that maybe once Denise is back home and not taking her antifungal meds through the IV, he can get her to try the elixir version instead of the pills that she gags on.
The hospitalist told us that the CT scan came back showing nothing to be concerned about. A calorometric test to determine her calorie intake requirement was done the other day and we're still waiting for those results. She also said that the rehab doctor so far has determined that Denise would not go to rehab. Her condition can improve as nutrition improves and exercise resumes. Apparently rehab is designed more for people that have lost muscle memory and can't even walk. Rehab at Casa Colina (where we were first told we'd likely go) additionally focuses on patients with cognitive problems, and Denise is apparently past that point of concern to qualify for going there. The hospitalist said that after the hospital, perhaps a skilled nursing facility (SNF) would be appropriate. The reason is that she will probably get to a point where she's too healthy to be in the hospital, but will still need TPN and other IV meds at home. The TPN has a high sugar content and can cause her to need insulin. A regular caregiver through an agency probably wouldn't be licensed to do the finger stick test and inject the insulin, but an on-call nurse wouldn't be able to come by our house every time Denise would need insulin. However, an few SNFs would be able to deal with Denise's TPN requirements. The hospitalist told us the name of a facility that she thought was here in Duarte that has an excellent PT department. Looking it up in the yellow pages, the closest name match was in nearby Glendora. So we visited the place that we think the hospitalist was talking about. It's called Foothill Nursing & Rehabilitation Center, and it's by the Pres hospital in Glendora. We'd appreciate input from anyone that knows anything about the place.
Denise walked about 100 feet today and did some bed exercises. Other than that, she was too pooped out to do anything else and slept most of the time. Denise didn't eat or drink much today. I don't recall lunch ever being delivered, and at dinner all she had was a few spoonfuls of Jello, which she vomited up a few minutes later. She's not at all nauseated; there just seems to be a mechanical obstruction. The hospitalist suspects that Denise has SMAS, even though the GI surgeon suspects it's "refeeding syndrome." I hate it when people that are smarter than me disagree about what's going on with my wife.
The hospitalist and my aunt were further discussing what might have helped make Denise's last discharge and following days at home more successful. One big drawback is the number of people that are involved, and the potential for lacks of communication among them. Also, looking over the records, we found that many episodes of emesis were not recorded in the days before discharge. I saw her throw up food & pills every day, and always let the staff know about it for fear of her not getting her meds. This happened every day except for the Thursday before discharge (I remember being happy she *didn't* throw up for a change). Since the hospitalist (and the doctor covering while she was gone) heavily rely on what the (overworked) nursing staff writes on the records, Denise fell victim to those errors. Another point that we discovered was that Denise was on a calorie count (or at least recording what percentage of her food was eaten), but there was no sign posted for it, as there was during other times of her hospital stay. So if Denise didn't want her pudding (or anything else), Gracie or Jacob (OK, or I) ate it. Had I known these things were being recorded, I'd have written down every single mini Snickers bar or portion of Payday candy bar that she ate, as I'd done before with calorie counts. The adequacy of her liquid intake in the days before discharge is something we will keep a closer eye on before discharge next time. Finally, we'll keep an overall eye on her nutritional status and weight. So many cracks to fall through... It's frustrating that she had to wait to see a doctor until after the long holiday weekend, then saw a doctor almost every day, but it wasn't until visiting the GI surgeon to consult about J-tube placement eleven days later that somebody finally thought it was time to go back to the hospital for some help. She looked about the same at the time of discharge on the 31st as she did four days later when she visited her new PCP, as well all the visits to specialists. By the way, time for a "thank you" to someone. The GI surgeon was super-nice and let Denise lay down on one of his exam beds until being admitted so she wouldn't have to endure sitting up in a waiting room, or driving home and back to the hospital. Much appreciated!
I forgot to write that Denise had a visit from a dog named Pebbles at the hospital. Yup! They have a volunteer program called PAT (Pet-Assisted Therapy), wherein animals come in to provide some entertainment for patients. I think they should've named the program Pet-Enhanced Therapy so they could shorten it to PET, but that would be too corny, right?


Anonymous Anonymous said...

Hi Phil,

I have not had any personal experience with the rehab that you are speaking of, but I know of some families in our church that have had family members that were patients there and they have been VERY DISSATIFIED with the quality of care that their loved one had received. We had also seen a decline in the quality of care that was received by Bob's mom while she was living, from Foothill Presbyterian Hospital which is the hospital across from the parking lot of the Care Facility you are speaking of. Please, if there is someone out there who has had other experiences please post them so that we make sure that Denise gets to the appropriate facility.

Our prayers continue to be with you our dear friends.


January 15, 2006 2:27 PM  
Anonymous Anonymous said...

Hi Phil - You wrote "we visited the place that we think the hospitalist was talking about. It's called Foothill Nursing & Rehabilitation Center, and it's by the Pres hospital in Glendora. We'd appreciate input from anyone that knows anything about the place." I don't know anything at all about the center you mentioned. All I can suggest, as a PT, is to try your best to keep them from sending Denise to a SNF. I have worked in home health care for the past 25 years, and SNF's are not the best, even if rehab is included in their promo liteature. Now that the holidays are past, and I am well again, I will come and exercise with and walk with Denise as often as possible - 4-5 times a week, (excluding away basketball dates for PCS) beginning the week of Jan 23rd. Our daughter (youngest) is getting married this coming week-end). Our prayers continue to flow for all of you. Stay strong and let us all pray and know that our God take charge of the followup care for Denise. Carol Berglund

January 15, 2006 9:34 PM  
Anonymous Anonymous said...

I have been praying for Denise and your family since this all began. You don't know me I have just been reading your blog. So I'd say it's safe to say (me not knowing you or your family) that it would be nice to read that maybe Denise's mother would come out and take care of Denise and help out at home while Denise is sick and at home. Or some other family members. I thank God for your Aunt Nurse. She is truely a blessing. Again I don't know any of your other family's situations or circumstances. I'll be praying that some other family members step up and help you and Denise at home. If I could I would. Take Care.

January 16, 2006 10:19 AM  

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