J-tube fixed, Auth goof, Different room, Brownie Fairy

Denise and the caregiver we hired went from the SNF to Huntington Hospital at 10:30 this morning to have the j-tube replaced. While there, the caregiver called to say that they might just send Denise back to the SNF without doing the procedure because they didn't have an authorization for it. My nurse aunt made some phone calls while I was at work and eventually the authorization situation was resolved. They were able to simply ream out the j-tube to unclog it instead of having to remove & replace it. So that was nice that it was so simple. Then back at the SNF by mid-afternoon. About five hours taken up for a fifteen minute procedure. Initially I was told that I'd have to provide the transportation for Denise, or the facility could provide it, but I'd be billed. After explaining the circumstances...

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Transport, J-tube update, Neat Gracie story

Here's an update on Denise's clogged j-tube: They'll transport her to Huntington to have another j-tube reinserted tomorrow (Tuesday) at 10:30am. In the mean time, the doctor at the SNF is putting Denise on IV fluids. I assume that this means that there will not be any feeding going on. We're trying to see if the nurses can also keep trying to get some water through that clog. I remember that with the g-tube, they used to pour Coca-Cola down the tube... the acid in that soft drink would eat through the residue in the tube. Hmm... maybe I'll ask about that for the j-tube. Dumb thought, but what the heck. Also, when the feedings do restart through the tube again, we're going to push for continuous 24-hour feedings so that everything stays moving and lessens the likelihood of a clog. This just...

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J-tube clogged, transporting back to Huntington

I *just* got a call stating that Denise's j-tube had clogged and they are transporting her back to Huntington to have it reinserted. Possible causes for the clog include fiber in the feedings and possible lack of sufficient flushing of the tube. I assume that she will then come back to the SNF after the procedure, but I'm not sure. I'm awaiting a call with more details. Looks like another long day ahead.*sigh*And when I think I'm exhausted and can't deal with this anymore, I just think of what Denise has gone through to put things into perspecti...

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Walked with quad cane

Sorry for not posting for a few days. This transfer kept us on our toes and very busy with changes to paperwork, talking to doctors, caregivers, double-checking and triple-checking everything... Overall, Denise is making progress. The following is the very short version of what went on. And it's still a long read... Wednesday night was not good for Denise- no air mattress and the bed didn't work correctly, lots of new noises all night.Vomiting and pain. She was one tired cookie on Thursday. Thursday morning Denise was seen by her new SNF doctor. New place- New doctor. HMO's don't want us to get used to anyone. Because he didn't know Denise from Adam or Eve before Thursday morning the orders needed to be reviewed by us and tweaked a bit to fit Denise's special needs. She's a very special...

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Moved to Country Villa SNF last night

Very long story very short:Denise was moved to a new venue last night.Country Villa Monrovia615 W. Duarte Rd.Monrovia CA 91016 (corner of Duarte Rd. & Tenth Ave/Alamitas Ave.)626-358-4547 (ask for Denise Williams)You can email her at pullingfordenise@yahoo.com.If you can go by & visit, please do so. Bring a book to read in case she's sleeping. The staffing is a little thin by comparison to what she came from, so a little extra attention for her during the daytime would be appreciated (we have someone lined up to help through the first few nights 7pm-7am). At the moment, we don't have a schedule of her therapy sessions. There's a very nice courtyard that she'd probably like to go wheeling through in her chair.More details later ...

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Denise moving to SNF in Momrovia 5pm TODAY

Typical.I checked my voice mail at 3pm when school got out and found that they want to move Denise to a different nursing home in Monrovia (not Glendora) at 5pm today. Of course, I've not had an opportunity to even check this place out, nor ask about any other possible options. The regular hospitalist that's been working with Denise is off today. Needless to say, my aunt will be on the phone going over the details for us. I've just scrambled to find someone to take Gracie home (I didn't have anyone to stay with her at home today, so she just stayed with me at work... I don't think she minded too much). And hopefully some of the regular people available in the evenings will be available tonight.Once again, this is nuts.Pr...

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No transfer to SNF yet, Hemoglobin low

The transfer to the SNF that we anticipated yesterday didn't happen. Denise's hemoglobin went to 8.7, so procrit was given. It turns out that she did have a private room lined up at the SNF. I'm grateful that there was that option, not only for the peace & quiet, but also due to infection concerns. Anyway, as the day went on, that room became unavailable. In fact, the SNF rep in charge of transfers said that there were no open beds. I assume that means she'll stay in the hospital a little longer. If so, hopefully she can stay on the same floor she's on. The nursing care there is very attentive. There were some more happenings, but I don't have time to go into them. I don't know what's going on today. However, Gracie does have an ear infection (not contagious), my aunt left last night,...

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Transfer from hospital to SNF Tuesday

Denise is slated to transfer from Huntington Hospital to Foothill Nursing and Rehabilitation Center sometime tomorrow. What time is anybody's guess. Today she threw up once. The doctor's best guess is that SMAS, not refeeding syndrome, nor the more recently suggested Fanconi syndrome, is her problem, and that weight gain will lead to correction of the problem. TPN was discontinued, and she's now only on feeding tube nourishment. Her spirits were good, and she walked around and did bed exercises a few times.She'll be moved from Pasadena (where I work) to Glendora, which will make it hard for me to dash off to visit her throughout the day. Once I know her rehab schedule at the SNF (it won't be very intensive, and she'll have lots of free time), we'd like to get some people in to spend some time...

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Feeding 60cc/hr, Still throwing up PO food

Today was a fairly uneventful day for Denise in the hospital. But yesterday's mail sure was exciting. Here's a portion of a letter I received from PacifiCare. Notice that the DOS (Dates Of Service) were from just three or four days that Denise was in a regular room at USC. I've heard that an ICU room could be double or triple the cost of a regular hospital room. I was in the company of other teachers when I opened this up and we were all stunned to think that three or four days in the hospital could cost more than a year's pay. In my mind, the insurance plan that my school offers immediately became an even larger blessing. Now, the letter stated...

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Tube feeding started, Galium scan results

Feeding started through the tube sometime late last night or early this morning. It was set at 20ml per hour. Each ml has 1.2 calories. Around 2pm this afternoon it was turned to 40ml/hr. Apparently when they hit 60cc, that should be enough for weight gain. The GI doctor also verified that Denise can drink and eat again. She ate very little dinner tonight... just a little bit of chicken, but it's stayed down so far.She had periods of emesis last night and today even though she wasn't eating anything. It was a little bit... just enough to glaze the bottom of the emesis bowl up to maybe 20cc of brownish stuff. It was usually set off by trying to take a pill, or maybe sitting up too fast after laying down a long time. She also been having hiccups that started a few days ago.Official word on the...

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Feeding tube inserted, Fever of 100

The feeding tube went in today. They can start using it to drip food into the intestine within 12-24 hours. Until then, she's still on TPN feeding through the IV. She was not allowed to eat or drink before the procedure. Tonight when I was talking to her on the phone, she started wretching. When I arrived, she was already visiting with a couple of her college buddies (from Westmont... she also went to Biola and finally Cal State Fullerton when the cash ran low), one of whom said that Denise might have felt ill from the drugs administered during the feeding tube insertion.Tonight she is running a fever of 100 degrees. On the vitals printout, the highest recorded temp was C37.1 (F 98.8). So I hope the fever's a fluke. She weighed in at 89.9 pounds. BP 130/80. Pulse 104.All this hospital stuff...

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Galium scan, J-tube tomorrow

First, some plagiarism from my aunt's email, telling about her conversation with the hospitalst:"The GI doctor discussed the benefits vs the risks of J tube. Her white blood cell count is normal and she has had no temp since the weekend. Having the feedings for nutrition present far less risks than long term TPN. So, tomorrow a procedure will be done in radiology to insert a tube into the stomach and then advance it to the jejunum for feedings. It will not have the G (gastric tube) only the J ( jejunal) tube. Feeding through the tube will begin 12 to 24 hours after the insertion. The feedings will be started very slowly and advanced to a rate to meet her caloric need. As the feedings increase the TPN ( IV nutrition) will be slowly tapered off. Crushed pills cannot be put down the tube because...

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Six months in hospital, Galium scan & possible move to SNF tomorrow, J-G again?

At the moment, here's what's up...It's been six months in the hospital today.Galium scan is on deck for tomorrow and if the results come back clear, Denise will likely be moved to the Foothill Nursing & Rehab Center tomorrow. It turns out that the facility that the USC doctor thought about moving Denise to wasn't on either. We really think that the hospitalist tried her best to argue our case, but the decision was out of her hands. The facility was not contracted with Denise's medical group nor with the insurance company, and the decision makers felt that Denise's condition didn't warrant the care of that USC doctor (a critical care/trauma specialist). That's probably true enough. But she's not a regular patient, either. Her history lays that out quite clearly.There are a few silver linings....

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Malnourished, Plot twists

I'm very tired & going to be lazy. Big points are that a doctor that visited Denise considers her critically malnourished and said that we could still lose her. She needs to get more real food into her. She needs to elude infections associated with the TPN IV feeding. We're sitting & waiting to see what decisions will be made about where she goes next. Here's a copy & paste from my aunt the nurse, who spoke to the USC doctor that came to see Denise today. Very interesting plot twists...The USC doc thinks she needs to be on TPN (total parenteral(IV)nutrition) for a month to 6 weeks.He states there are risks involved of yeast and bacterial infections,deep vein thrombosis, and liver failure. He says to expect aninfection. But we have no other options to try to get nutrition inher...

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Waiting to see where she goes next

OK, here's where we are: We don't know where we are.Denise was better today... she enjoyed her therapy session, and she and I took a walk (over 150 feet, on top of what she'd walked in the morning) and did some exercises. She was alert & awake longer today as well. It was nice to see the improvement. She did vomit a little just before lunch, though. There was no emesis bowl handy, so she just threw up into a little soup bowl. Neither the nurse nor the assistant knew that Denise had thrown up until I told them (and asked to have the emesis charted). Denise forgot to mention it. And, well, you've seen hospital food. If I were looking at a bowl of hospital food and a bowl of hurl right next to it, I might not notice the difference, either (really, she's usually liked this hospital's food)....

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Move NOT today, but on the horizon

After making some calls, a couple things were clarified:Denise is not being moved today. It's on the horizon, though, and the case manager is trying to see if there's a bed at the skilled nursing facility. If there's no bed, she just stays at the hospital.The Foothill Nursing and Rehabilitation Center is the only SNF in the medical group's network that can handle patients on TPN. So there are no other choices. Reading comments to Saturday's post, I've got concerns, but in checking their ratings & violations, I'm encouraged by recent improvement (or is it just that the 2005 stats haven't been tabulated & posted yet?). I'm going to try to get a visit/tour as soon as I'm done typing this to try & check things out for myself.If Denise were to stay at home, we'd have to have a nurse...

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Move to nursing home today? Yikes!

Denise just called me and said that a case worker visited her and said they're talking about moving her out to a skilled nursing facility today. Notice the holiday Monday that we're sittin on. I guess we're in that bubble where she's considered not bad enough to need to stay in a hospital but not well enough to go home, either. So a skilled nursing facility is the middle ground. I saw the nuring home Friday night, but it was after visiting hours & nobody could show us around. I'd really like to first be made aware of other options for area nursing homes that can handle patients on TPN and give rehab care. Denise is hardly eating anything, and even said she was wretching some more last night. After two discharges that resulted in us returning for two more hospital stays, her stopping anti-seizure...

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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...

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Refeeding syndrome? CT scan, Anti-seizure meds stopped

Yesterday: The GI surgeon told us that Denise might have something called "refeeding syndrome" rather than the SMAS mentioned recently (artery pressing against & collapsing part of the intestine). TPN was started last night at 9pm. It's got lots of sugar in it, so they're testing her blood sugars and will give her insulin if needed, which is to be expected. The presence of so much sugar makes a great playground for germs that would like to start an infection, but her white cell is in a normal range, so let's hope it stays that way to indicate no infection. My aunt touched base with Denise's hospitalist to see if we can make the next discharge, whenever that may be, much more successful. There was talk of, if Denise is stable, discharging her Saturday. Uh, needless to say, I'm not too keen...

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Room 541 Huntington Hospital, Meals, Freezer?

Denise is in room 541 in the east tower at Huntington Hospital. The phone number direct to her bedside phone is 626-397-8164. Posted visiting hours are 11am-8pm. Because her high calcium might be caused by immobility and lack of weight-bearing activity, we're trying to get the hospital to provide her multiple PT/OT sessions throughout the day. My aunt's there now trying to see if that can be lined up, and trying to talk to the hospitalist (doctor in charge of the case) and as many specialists as possible. Gracie & I went by for a short visit before work. Denise was happy to see us. But she had already thrown up a couple times this morning and once while we were there. TPN should start later today to get some calories in her and meat on her bones.We have a need for a chest freezer in which...

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In the hospital, PICC line, No J-tube, No SMAS? IV nutrition on deck

I just got back from Huntington Hospital, where Denise was admitted again to try to correct her malnutrition resulting from not being able to hold food down (and get meds into her that she hasn't been able to keep down). The gastro surgeon told us that it's reasonable to expect at least a week in the hospital. A PICC line is being inserted. IV nutrition will start tomorrow. It's called TPN, and it's custom-mixed to meet a patient's needs (looks like a pina colada, which we could probably all use right about now). Unfortunately, an order wasn't put in for Denise in time for the 3pm deadline to mix the stuff. So her order will be picked up tomorrow after 3pm, processed, and she'll get her TPN started hopefully soon thereafter. In the mean time, she's getting an IV with electrolytes & as...

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Denise being admitted to hospital again

Denise had an appointment with the GI doctor today to see about the J-tube. He thought that Denise should be admitted to the hospital today, and my nurse aunt is taking care of that right now. Apparently in addition to the J-tube, she will be getting IV nutrition (TPN) to jump-start her. All this news came to me just at the end of the school day, so I'm off to take Gracie home, then meet Denise & my aunt at the hospital. More details to follow when I know mo...

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Cardiology appt, New home care nurse & caregiver

Here’s a neat picture of Jacob wearing a "hat" on his head. It didn't take long for him to find it, snatch it, run away, and try it on. Many thanks to a parent from my school for loaning this to us… though I’m not sure if it’s the type of thing that you give back once it’s been used… sort of like a Kleenex.Not much different medically today. Denise’s bed sore has improved quite a lot over the last week. It’s getting small enough that improvements are more noticeable. Today her pulse was 86 in the morning (laying in bed, comfy). At an appointment today she was at 109. Not bad considering how uncomfy she was and how that would make her heart rate...

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87 pounds, Endocrinology & GI appointments, J-tube recommended

I started back at work today. Gracie also started her first day back at preschool again. Here's a picture of her showing off her new shoes. They light up, and it's important that everyone knows it. Denise weighed in at 87 pounds this morning. If you’ve never met her in person, she’s 5’3” and usually around 125 pounds. She’s in pretty good spirits, but too tired & weak to do much.Denise went to an endocrinologist today to see about her high calcium and hear the results of the bone scan. They were ruling out bone cancer being the cause of high calcium The bone scan came back normal. But he’s puzzled by why her calcium continued to go up (12.4)....

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Not holding food down, Another IV

Denise is not holding food down. There was no nausea, so we’re wondering if it’s possible that she has a condition brought up shortly before her second discharge, wherein she so skinny that an artery from the heart that crosses a part of the intestine is causing the intestine to collapse, and hence causing the vomiting. Even the tiniest bit of food usually made her vomit. The best luck she had was with chicken soup. The shake’s that we’d had good luck with so far weren’t even staying down. As a result, she didn’t have much energy today and slept most of the time. She only got up for bathroom breaks to retrain the bladder. She couldn’t stay up very long and wanted to lay down again. There was an IV (the last IV was only saline, by the way, this one also has potassium) delivered this afternoon...

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IV helped, Blood lab

It seems that the last couple of posts have not been displayed on the blog. Hopefully it’s a glitch that will work itself out very soon. In the mean time, here’s the scoop…Denise looked and felt much better after after her IV was finished this morning. A walk around the back yard was one of the first things she did today. She also held down all her food today, as far as I can remember. She’s really doing well with soups, mushy food, and especially shakes. She wasn’t able to lose much fluid today. On the one hand, it’s nice that she’s not having any accidents today. On the other hand, the fact that she’s staying so dry supports the notion that she was dehydrated yesterday. There was a blood draw done today (in home) and I dropped the samples off at the lab at 11:15 am this morning. The doctor...

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Rehab evaluation, Neuro appointment, Home IV

Denise walked on the patio for a bit, but she’s otherwise getting more tired & sleepy, and I fear that we’re losing even more ground. It’s been insane trying to get everyone to work together to get the appointments, labs, rehab, etc. We did get a visit from a rehab outfit called Rehab Without Walls. It sounds great. But the person sent to evaluate Denise wasn’t sure that Denise would be able to endure the program. She went so far as to say she thought that Denise got discharged too early. It was nice to hear someone from outside the situation say the same thing I was thinking. Anyway, they will accept Denise into the program. If she can endure, great. If not, they’re going to make some noise for us to get some other PT/OT people out to see Denise. It’s frustrating because we were told...

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Bone scan, g/j tube reinsertion brought up

Denise went for her bone scan today. It was a long, hard day for her. She was up from 10am to 4pm with no naps. They had a hard time finding a place to inject her with the radioactive isotope. Then they tried to put a pad onto the table during the scan, but it wasn’t soft enough and was plenty painful for her. There will be an appointment with the endocrinologist on Monday to find out the results. I’ll be back at work that day (more on starting back up at work in another post), but we’re blessed that the aunt nurse will be taking Denise for that. Between the injection and the scan, Denise gobbled down a bunch of tempura shrimp & other food from the same Thai place we were going to while she was at the hospital. But she also threw up twice today, triggered by gagging on pills both in the...

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Can we borrow a stethoscope?

First off, my aunt the nurse is staying with us for a week or so to talk to doctors & care for Denise. She forgot her stethoscope. Anybody have one that we can borrow for about a week?Today's happenings:- Hours of phone calling to set up appointments with all of the specialists, home care, etc.- Had to have a blood draw this afternoon- Scheduled a bone scan for tomorrow. This was something that the endocrinologist at Huntington tried to have done the day of discharge due to hypercalcemia (too much calcium in the blood).- Ate a fourth of a very large grilled veggie burrito. Yes, that's news-worthy.- Denise had her first appointment. It was with her new primary care physician. Her "regular" primary care physician is a doctor that she's only actually gone to two or three times, only to get...

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Some glitches, but better than the last discharge

I've started receiving emails & phone calls to see if we were OK. So I thought I'd better take a minute to post to the blog... and I'm including two photos to make up for the lack of posts for two days. One's a photo taken in the last minutes of Denise's hospital stay on Saturday. The other photo was taken today when Denise went outside for a walk up & down the driveway and a wheelchair ride around to see what the neighbors were up to.I've been either too busy or too tired to post until now. I'm shadowing her everywhere she walks, rolls, or sits. Overall, things are going well. Denise is weaker than she was at the time of her first discharge....

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Vitamins For Vegetarians

There are a lot of vegetarians amongst us, some by circumstance and some by choice. Those that are vegetarians by choice can be divided into two general groups, those that do not eat meat, poultry or fish, but do consume dairy products as - in theory - the animals are not harmed or killed by the gathering of those products. Vegans, however, use no animal products whatsoever. There are many health benefits to a planned vegetarian diet, as opposed to the unplanned vegetarian diets that result from poverty and a lack of food availability. However, there are also some special precautions that need to be taken to safeguard nutrition, as adequate amounts of some of the most important nutrients can be more difficult to obtain. This is especially true for those following the more restrictive vegan...

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Diet scams : How to avoid getting ripped off

Have you ever received those tempting ads that seemto arrive regularly in the post - seductive brochuresdescribing diet pills, patches and potions promisingmiracles? They show you "proof". They have theendorsements by medical and scientific "experts". Theyhave the pictures before and after. And they have noend of guarantees, free gifts and other offers.But when you look a bit deeper into the background ofthese diet products, you find very little of substance.With just a little research online you will see that youcan find nothing posted from any believable sourceabout the product or the experts depicted soglowingly.And you often see offer after offer sent by the samecompany using the same return address.Now the chances of a company hitting on a miracleproduct once are remote but three such...

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