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 (I'm at work, no one's available). I was very happy that the case worker was able to get the SNF to take care of transportation. That was without having to mention that the feeding tube may not have clogged had it been going 24 hours and flushed every 4 hours as per GI specialist recommendation from the hospital last week. Anyway, bottom line is that they sent Denise back to the SNF with instructions to flush the tube more frequently, especially if 24 hour feedings cannot happen for some reason.

She tried to eat some soft food tonight. The speech therapist fed her himself. Denise threw up right after trying to eat some food. She also threw up shortly before the food came into the room. On a positive note, that was the first time she threw up in about a day & a half. Not bad, considering how things have been going. Perhaps she was just exhausted after a long hard day of sitting up most of the time, and not having any food going through her for over a day.

I bet some of you are wondering why Denise needs a speech therapist, as I was. She talks fine. But a speech therapist also deals with swallowing and other issues that might be beneficial to Denise. He's a great guy and Denise likes him a lot. She also said her other therapists for PT and OT are really nice. Working out is still her favorite part of the day. Yesterday she walked across a small room using regular cane (not a quad cane this time)! Today during the time at the hospital, she got tired of the wheelchair. But her walker was at the SNF. So the caregiver held her by the arm and Denise walked around that way. Big milestone!

She has a different room tonight. She was moved from a room with three beds that shares a bathroom with another three-bed room. The roommates really liked to have the TV going as much as possible, as loud as possible. The room she has now is only two beds, and the bathroom is only used by the patients in that room. The TV is one that someone abandoned and hardly works, so it's turned off. Bittersweet, but Denise's roommate is a woman that had a stroke and is incapable of speaking or getting up to use the restroom. That means that the chances of infection through that means are cut dramatically. Her family has a radio quietly playing on a Christian station to "provide some company." That programming is just fine with Denise. The only downside is that the rooms tend to get stuffy. When the sliding glass door is opened, the smell of cigarette smoke sometimes wafts in from the patio just outside. The smell makes Denise nauseated. Anybody have any input about air purifiers?

The other night somebody from my school provided us a pan of really good brownies. But Gracie doesn't know that. She thinks there's a "Brownie Fairy" that sometimes leaves her a piece of a brownie while she's in the bathtub after dinner. No, I don't mind having fun at the expense of my children. I've been immensely blessed to have a friend staying with us for a few weeks to run interference for me. As much as I feel like I'm drowning, I'd be much worse off if he weren't around. Anyway, he's in on the Brownie Fairy bit. Tonight, we ratcheted up the Brownie Fairy gag to a new level. Gracie asked if I thought the Brownie Fairy might visit again tonight. I said I didn't know. I surreptitiously dialed our home phone from my cell phone, answered the house phone, and pretended to have a conversation with the Brownie Fairy. Then Gracie wanted to talk to the Brownie Fairy. Uh-oh. Thinking quick, my friend grabbed one of the extension phones and went into another room, where he disguised his voice and talked to Gracie. But he did a James Brown impersonation while talking to her. "Ow! Hey! Papa Got a Brand New Pan! Yeah!" He was the James Brownie Fairy, the hardest working man in fairy business.

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 in: The case manager is anticipating a two-bed room at this facility to open up tomorrow (Denise is sharing a room with two others, bathroom with five others). But there's also a possibility of a private room opening up at that Foothill facility that she was supposed to go to last week. The fewer people sharing the room & bathroom, the fewer the chances are for infection (very important). But we'd have to start all over again with getting people familiar with Denise's case, double & triple-checking paperwork, etc. Also, the Foothill facility is farther away. The place she's at now is between home & work, and only five minutes from where we live. To me, the lower probability of infection trumps the headache of paperwork, peoplework, and commuting. Thinking outside the box (and looking at the bottom line from the point of view of the HMO's bean counters), maybe it's possible to keep Denise at home with RN-level help to deal with the PICC blood draws, j-tube flushing, etc. Again, dumb idea, but who knows? We need wisdom, wisdom, wisdom!

Something impressive neat happened with Gracie over the weekend, and I can't believe that I forgot to type about it earlier this morning. This happened the first time I tried to take Gracie to visit Denise. Everyone in the lobby and down Denise's hallway was in a wheelchair. Many were slumped over in their chairs, some had tongues swollen out of their mouths, a woman was sitting in a chair seemingly convulsing and spacing out (for lack of understanding about what condition she has, that's the best description I can think of). Gracie was scared of the appearances of many of the people there. It didn't help that many residents, upon seeing Gracie, rolled over to her for a visit, some of them reaching out to her, a few unable to smile, some unable to speak intelligibly. Gracie was startled, clung to me, started sobbing, and so I took outside, where she started full-on crying. We went home.
Once there, I pulled out a children's book that one of Denise's friends gave us. It's called "Someone Special, Just Like Me" and it deals with physical disabilites. We talked about how the people that we saw are sick, like mommy. They're mostly older and sick in different ways, but they're still people that God loves, and we should be loving toward them, too. They can be happy, sad, and just like mommy, they probably are excited to see little kids like Gracie. They were trying to be friendly. Some of them are so sick that they can't smile or speak, even though they would really like to.
We went back again with Jacob later. The lobby was fairly empty and my mom was there, so things went well. Jacob, by the way, seems to be fine during the visits. He's probably thinking, "Big deal... I too am rolling around, can't talk, drool, and need diapers." Moving right along... Another day when I brought Gracie, one of her little friends and her mom were visiting Denise. Gracie & the other little girl were peas in a pod, and all went well... they sort of distracted each other from the residents. The last time I brought Gracie, the lobby was full, and Gracie was all smiles with everyone. She actually seemed to dig all the attention. There's a waiting room with an aquarium in it, and Gracie got a kick out of finding a large fish that lurks at the bottom. One of the residents that Gracie was scared of during the first visit rolled in and tried talking to Gracie. I was able to tell Gracie what the woman was trying to say to her. I told the lady that Gracie was enthralled with the big fish at the bottom of the tank, and I asked Gracie if she wanted to point out the fish to the lady. Gracie walked across the room to the lady and took her hand, pulling with all her might to get the lady rolling over to the aquarium, smiling and excitedly telling her to hurry up before the fish hides somewhere where they can't see it anymore. Ever since, she knows no strangers there.

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 perspective.

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 gal. Friday we spent putting the new orders in place with the
staff who seem to be getting to know Denise and appreciating how special she is.
Denise is now getting PT(physical therapy) twice a day 6 days a week, OT( occupational therapy) once a day 5 days a week. Friday she started putting on real clothes, not the stylish gown provided. Street clothes make us all feel a little more normal. Friday she walked quite a ways (150-200 feet) to the PT room where she then used a quad cane and walked very well with it. Saturday she walked to and from the PT room and later out to the patio. The PT on Saturday happened to be a therapist who worked with Denise when she was in the ICU at Methodist on respirators and many machines and tubes. She was amazed at how good Denise looked and how far she has come. She got out of bed and to the commode by herself with the OT Friday. This is a very independent step when your spending your days in a SNF. She is able to help pull herself up in bed and turn herself more now also.
Unfortunately she is still having problems with vomiting. They are trying to aspirate from the G tube very shift to try to get the gastric acid out before it comes up. Aspirations were ordered every four hours, but that is a bit much to expect from the SNF situation. We just started doing it and not sure if its helping that much yet. Friday she was evaluated by the Speech Therapist for swallowing. The G tube was aspirated and she had Droperidol for nausea 30 minutes before her eating test. She sat at the side of the bed and ate a few bites of rice, more bites of ice cream, some applesauce, and drank some mystery juice (none of us was sure what it was). She sat up for another 15 minutes after eating. Even though she had some vomiting later during the night that food stayed down. The speech therapist will discuss recommendations with the doctor Monday and she will hopefully start getting one meal a day.

Saturaday morning she vomited 4 times from 7 am to 12:30pm, but did better the next 3 1/2 hours. Her J tube feeding was set for only 16 hours a day instead of the 24 hours a day at Huntington on Thursday but was increased to 75 cc per hour for 22 hours a day on Friday night at 9:30pm. That will now deliver just shy of 2000 calories a day... what she needs to gain weight. Denise said she had a loose stool on Thursday. She had two hard stools Sat afternoon. For those familiar with tube feedings it usually can cause diarrhea so this is unusual. For those not familiar with tube, it's just more gross stuff to read about.

She got a shower on Saturday. Wednesday and Saturdays are shower days for bed Cs they tell us. She just told us it felt good.
Labs done Thursday am - Creatinine 0.4 alittle low. Sodium 133-low, Potassium 4.6 normal, Chloride 95 low, Calcium 9.7 normal, Albumin 2.2 low,SGPT 37 above normal but nowhere as high as back at Methodist, Alk Phos 312 high, Magnesium 1.8 normal. Her Hb was 9.8. On Sat early am her Hb was 9.2. Plts 553. She had the Red Blood cell growth factor Tuesday at Huntington when it was 8.7. She was not getting iron when on TPN she is now getting some in her feeding but probably is behind in iron stores. We are checking if the Iron panel was done at Huntington. Friday night we got a scary call at 11pm that her HB was 7.5 and she might be transfered to a acute care facility. It turned out on recheck to be 9.2. My aunt said it was something about waste in the PICC line... I'm so tired I didn't have time to learn about that. But the medically-inclined that are reading this can post or email explainations later on.

Denise has had a private caregiver every 12 hours since Thursday 7pm and will continue until 7pm Monday if things are going well. The nurse aunt recommended this, though expensive, it will help Denise through a tough transition of an acute care setting to the much sparer staff setting of a SNF and assure me that her needs are being met when I can't be there night or day. Though the staff is caring and concerned about Denise, the reality is that the staffing ratios at a SNF makes it difficult for them to always meet Denise's needs in as timely a fashion as they would like.

Moved to Country Villa SNF last night

Very long story very short:
Denise was moved to a new venue last night.
Country Villa Monrovia
615 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 on.

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.
Pray.

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, and my mom & dad are not feeling well (mom's sick, dad's on chemo). So it would make sense, given the trends, that today would be selected as the day to move her, while everything else in my little world is busy as well.

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 with her during each day of the week. If you think you might be able to rotate some time with her into your daily or weekly schedule, get ready... I'll put out the call in a post soon.

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 that the insurance company is awaiting itemization before the claim can procede, so I hope that this is nothing more than a paperwork issue. Still, pray. Now, on to the important person that this blog's about:
Denise's feeding tube was cranked up to 60ml per hour today. The GI doctor told me yesterday that this amount should allow Denise to begin gaining some weight. She's not been holding anything down that's been taken PO. Yup. PO. I know it means "by mouth" but I don't know why. Maybe it's Latin... "per oral" or something like that. I was thinking that if it means "by mouth," then maybe they should do it in plain English and use BM. But that one's already taken for the other end of the GI tract.
She threw up today at least thrice. This morning she tried to take a pain reliever in pill form (darvocet), and she threw up, but the pill stayed down. In the late afternoon she threw up right after taking an anti-nausea med. Nausea actually hasn't been a problem until just a couple days ago. Up until that time, food sounded good, but would just come up all of a sudden, or she'd gag on a pill. The other time she threw up was at night when she tried a liquid pain reliever (lortab). Water, bile, gastric acid... it's all there.
Denise's folks left for home and my aunt arrived today. She'll be here for a couple of days and her presence will be very handy in the event of a transfer to a SNF. We brought Gracie & Jacob by after church this morning. Gracie was fairly comfortable around Denise, but Jacob was a little more standoff-ish than he'd been previously. Denise said that was OK with her. She had an upbeat attitude about that. By the way, last night she refused her antidepressant (Lexapro) and didn't feel any better or worse from it, other than the relief of not throwing up after taking the pill.
Vitals: temp 98.4, pulse 97, bp 133/72.

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 galium scan is that there's nothing to be concerned about. Liver's a little enlarged (no surprise... been that way for months, I think), isotope collected in breasts (consistent with recent pregnancy, according to the nurse), and didn't show any abcesses in the colon.
She had no fevers beyond the 100 she had last night. I found out that it's fairly common to spike a one-time fever after a minor procedure like what she had done. Blood pressure 110/70, blood sugar 135... not bad for being on TPN, which is being lowered as the J-tube feeding is being increased.
She had another big day for visitors. Three of her college buddies came by, her mom & dad came to town, and of course there was me (again & again & again). I'm there so much that I'm thinking of just buying a season pass. :O)

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 started to grate on me today. Well, it's been grating for six months. But today I finally had to take all the hospital-related items out of the house & put them into the garage where they can stay until Denise gets home again. Now our bedroom & bathroom is clear of bandages, IV tree, wheelchair, shower transfer, med bottles, IV bags, and all sorts of things.
Gracie has a Barbie toy electric guitar. In the car today, she asked what the music was on the radio, and I said it was Led Zeppelin. She kept trying to repeat it, so we kept working on it. Many miles, minutes, and radio station changes later, we pulled into the driveway. She said, "Can you show me how to play the Left Zipping song on my Barbie guitar, Daddy?"
That's my girl.

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 it is a small diameter and
they would clog it. The doctor and pharmacist will confer and try to
put whatever is available in liquid form down the tube and only what
isn't for Denise to have to swallow. Her transfer to the SNF (skilled
nursing facility) will probably not happen till Monday or Tuesday
depending on how she tolerates the feedings. They will watch for
distention, diarrhea, and abdominal cramping. The hospitalist works
closely with the doctor who will follow her in the SNF and will
appraise him of Denise's condition before she is transferred. The
galium scan (test to look for infection) was completed today but the
doctor did not have results back yet to report to us. We hope to find
that out tomorrow."

And now my two cents worth:
So several things went well today. The suggestion late last night to get a feeding tube into Denise went over very well. It was presented this morning to the GI doctor, who got on the horn to the hospitalist. Both saw the value in having it in place, and we were pleased to have the suggestion acted upon so quickly. Denise is encouraged by the thought of fewer infection risks with the feeding tube, and the fact that she had about two months of successful feeding with the previous tube. The hospitalist also talked about what usually happens with feeding tube start-ups, but that Denise is unique. That was good to hear... indicates some extra TLC, we hope. It turns out that the hospitalist is familiar with and is in frequent contact with the doctor that would be on call for Denise at the SNF. My aunt also called the SNF and spoke to a nurse to give a little history about Denise, just to get people warmed up for Denise and her special circumstances. For a while at least, she'll be staying at the hospital, hopefully on the current surgical floor with the very attentive nurses. While Gracie & I visited this morning, we all took a stroll around the short corridor. One of the chaplains came by for some prayer with us, too. I told him it was good to see him again, but really wish I didn't have any need to see him again. Also got a visit from one of the gentlemen from church that's been dropping by since the Arcadia Methodist days. And I forgot to mention these things the other day, but I got a call on my cell phone from someone in Texas that said their whole church is praying for my wife. I assume that they're Texas-sized prayers. And thank you to the mystery person that left delicious fresh strawberries on our doorstep.
A couple things went not so well, too. She vomited up after gagging on a pill this morning. That always scares Gracie. Denise vomited some more during the galium scan. She didn't eat much today at all. She was sleepy most of the time I was visiting (that or I just bore her). Still trying to regain full control of bowel & urinary function, and that's very frustrating to her.
The vitals: pulse 92, 118/70, temp 98.4, complaint of back ache but no headache.

Update on my dad's cancer: During his last checkup it was discovered that his tumors grew, indicating that the chemotherapy he was on is no longer working. Today he started a new chemotherapy protocol that is a clinical trial. He's apparently been coughing up increasing amounts of blood and isn't feeling well, and the chemo has some pretty harsh side-effects. So save some pull, even tug, for my folks.

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. It's not a holiday weekend. The transfer would happen on the watch of the hospitalist that's been following Denise, instead the doctor covering for her. They're willing to shuffle transfer times so that I will be off work and can accompany Denise during the transfer. Also, I received an email from one of Denise's good friends. Her uncle knows the administrator at the SNF and had good things to say. I'll take good news wherever I can find it.
Now here's an interesting "what if" situation...
It's been brought up that perhaps another try at a J-G tube would be helpful. If Denise's intestines can absorb food, then use them. That still involves an entry point for infection, but after some time, the TPN could be stopped, which infection-wise presents a double-whammy (entry point for infection and lots of sugar for bacteria to play in). As noted in last night's blog post, TPN presents other risks, too. This idea came from the same school parent that had the idea of moving Denise to USC, where he's a surgeon. And this stuff is apparently right up his alley. We'll be asking about exploring this possibility tomorrow. It probably wouldn't make much difference about her going to the SNF, but at least she would go with an alternate feeding method already in place that they can start up when she's been there for a few days.
Keep pulling for Denise. All sorts of interesting things are happening fast.

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 an
infection. But we have no other options to try to get nutrition in
her if she is unable to hold food down. If she continues unable to
hold food down her chances of survival are remote. He will talk to
her hospitalist and try to talk with the Medical Director of the HMO
about his recommendations. His first choice is to become her primary
and try to get her into Holy Cross SNF near his clinic. Holy Cross is
a high level SNF that cares mainly for patients on respirators etc.
She may not fit the criteria of Holy Cross to get her in even if the
HMO approves it. 2nd would be to go to the HMO SNF and see him once a
week in the clinic. Feels home care in her present state and with
TPN would be questionable.

Now, Denise's spirits are pretty good. Today did have some positive aspects mixed in with the reminder of sick Denise is, the risks associated with the only currently reasonable treatment, and the stress of sitting on pins & needles waiting to find out what the HMO will decide and where she'll go next. She looked and sounded a little better today than yesterday, and was awake & alert more. The neuro doctor came in while a friend was visiting and said that the CT scan showed no meningitis and the anti-seizure meds were stopped. The hospitalist also said this previously, but it's always nice to hear good news again. A GI doctor thought that since there's no rhyme or reason to what Denise is holding down, maybe we could start to vary what Denise is eating according to her cravings. Hopefully the dietitian can also kick in some thoughts. After walking with me she decided to take it easy. This wasn't due to fatigue, but because she thought that maybe she should save up those calories instead of pushing herself to walk farther. At breakfast she ate a couple spoonfuls of yogurt & only gagged up some thick saliva. At lunch she ate about half her tomato soup but about half of what she ate came back up. At dinner she had about 150ml of vanilla Ensure and it stayed down nicely. She said it actually tasted good this time (she hated the stuff for most of the hospital stay). She wanted more, but also wanted to stop while she was ahead. And of course the chocolate truffle stayed where it belonged this afternoon, as well as several sips of water.
So there are lots of ways to pull for Denise tonight. Health (get food in, keep infections out). HMO decisions. Facility availability. Meeting the criteria. We don't know where Denise's next stop is, but we're eager to find out.

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). She weighed 90 pounds today. Same as yesterday. A couple pounds heavier than when she was admitted on Wednesday. We can expect her to put on between 1 & 2 pounds per week. Her healthy weight is around 125. You do the math to see how many weeks it'll take her to get back up. Today she ate a few spoonfuls of yogurt for breakfast and a few spoonfuls of pudding for lunch. She downed a small chocolate truffle in the late afternoon but didn't want another one... a sure sign that she's ill. I don't know how dinner went. But I know she's sick of chicken broth. The dietitian gave us the results of Denise's calorimetric test from the other day. Her REE (resting energy expenditure) is 1049 calories. They figure a 20% increase for activity, so they've got her estimated at 1550 calories per day, so the TPN is going to deliver that since she can't take much by mouth. Denise said she's almost used to vomiting, except she doesn't like messing her sheets & clothes. Sad, huh?
I did go to visit the potential next facility today. I ran into some very nice people on staff, and hope that they're typical of the staff there. I was told that their people are working with the case manager to get Denise in, but nobody knows the status or timing yet. There didn't seem to be any rooms available for just one person. Every room had two beds, one bathroom, two TVs. The shower rooms were down the hall. Denise didn't like the shower or TV situation. Every TV in the place seemed to be on, and turned up good & loud. Denise & I have often thought we should just get rid of our TV, except we do need it if we want to watch movies. But she did like that the kids & I could eat in the dining room with her, and that the facility will let us bring our dog as long as she's on a leash & doesn't bite. That should make Chloe happy, as she's been neglected for about six months. She's dug up the yard pretty good to prove it to us. The facility's administrator has been there for about a year or so, and I heard that she runs a tighter ship than what's been in the past. The rehab rooms seemed larger and better-equipped than Huntington's. But at Huntington I definitely saw how the people doing the therapy more than make up for visually lackluster equipment. The downer is that PT & OT are only one session each per day, 45 minutes per session. Denise was getting much more therapy at Huntington's rehab. Anyway, if anyone has any input on this SNF, their contracted doctors, or any other aspect of the facility, please send us an email (pdjwilliams@yahoo.com). But enough of that.
The hospitalist took the time to call my aunt late tonight after a heavy workload today (I believe it, based on what I saw in the hospital this weekend). We appreciate that she's addressing our concerns. Here are the highlights of the conversation:
She did not know that Denise vomited today, so we're going to get on top of having nurses ask Denise. The GI doctor decided that no endoscopy would be performed at this time (reasonable, since an invasive procedure with a PICC line and TPN going would increase the chances of infection). He didn't have any words of wisdom about why Denise is unable to hold most food down. Chest x-ray's OK. Urine's OK. The doctor from USC will be checking with Denise tomorrow. He saw her at her lowest and has been checking in on her even after she moved to Huntington. The ID people are following up on Denise's fever and have ordered up a gallium scan for tomorrow. I believe that she was going to have one earlier, the isotope was injected, but then she was transferred to USC and the actual scan wasn't performed. An ultrasound was performed on both legs to check for DVTs, and everything was OK. We had thought of possibly letting Denise come home *if* we had someone on site to run the IV & other needle-related work. The doctor stated that it would be better, if anything did go wrong, to be at the SNF because they'd have an RN on site 24/7 and doctors on call. True enough.
So we're just waiting to see what happens and enjoying every step that Denise takes toward getting stronger. If only she could keep that food down now. She's got quite a complex history and I'm still uneasy about the thought of moving her from an acute care setting to a SNF setting at this point. I admit that I'm far from being a doctor; I'm not informed or experienced enough to know what's best for Denise. Not that I'm the insurance company, either.
Pull some more for her & the people that will be making the decisions about what to do next.

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 come to the home to do the TPN IV, blood tests, insulin, etc. According to Denise's case manager from her medical group, we're allowed 100 visits with a $15 copay per visit. Those 100 visits would get used up pretty fast.
  
• In the SNF, in general, there is no copay for the first 20 days, then there is a $50 per day copay beyond that. Again, that's just in general. Of course, PacifiCare's computers are still down, so they can't tell me anything about Denise's specific copay arrangement at this facility.

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 meds only a few days ago, not knowing what the problem is that's causing the vomiting (SMAS or refeeding syndrome), and more, I'm not keen on losing the acute care security blanket quite yet. I called PacifiCare and the rep said that their system is down, she could only answer general benefit questions, and recommended that I call back again in one hour.
Pray, pull, tug.

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?

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 on that. Interesting, isn't it, that both her discharges have been at the beginning of long holiday weekends, and this is another one, with MLK day on Monday? When all was said & done, it seems that we have an understanding that there will be no discharge happening this weekend.

Today: Denise couldn't wake herself up when Gracie & I came to visit before work/school this morning. I don't blame her... I could hardly wake myself up this morning, either. Denise ate very little of her liquid diet and didn't vomit until the night time, but only a little at that. Almost, if not all, of her meds are being given through the IV right now. When at home, she had to take 32 pills per day, most with plenty of water. Doesn't leave much room for food, does it?
PT came to visit & she took a short walk, then did some exercises in bed. She was very tired but was a trooper and tried her best. Calcium is almost back to normal at 10.6, potassium at 3.5, they're checking phosphorus regularly & adding it to the IV.
Denise's new primary care physician came in to check on her, and it was his first day of his "vacation." He & his wife are expecting their first baby on the 18th (the six month mark of Denise's hospital stay). That's dedication. It's kind of funny... the same sort of thing happened with the doctor that was in charge of Denise's case at Arcadia Methodist CCU.
The infectious disease doctor ordered a CT scan of Denise's head to check on any hydrocephalus or any other problems related to the meningitis that she had. He stated that we don't know if the meningitis is still active or gone, and we don't really want to put her through a spinal tap right now. So this is the least-invasive thing to do.
The regular neuro doctor is off right now, but the doctor covering for him discontinued Denise's anti-seizure meds (Lamictal). She's been on such a low dose for a week & hasn't exhibited seizure activity. Her electrolytes were very low when she had the seizure back in rehab, and they're low now... maybe it was just a one-time thing. I remember reading somewhere that a fourth to a third of people that have a seizure have just one and then that's it.
The rehab doctor also came by to visit Denise. No decision has been made as to whether she'll be accepted back into rehab to regain the ground she's lost since being discharged from there. But the rehab doctor will be following her case.

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 to store frozen meals. Before buying a smallish one, I thought I'd see if anyone has an empty one in a garage somewhere that we can borrow for a while. That leads me to the meals... A teacher from my school has been coordinating meals for our family. She's got an option of donating for frozen meals if cooking something isn't up your alley. Contact Margot at margot3a@yahoo.com or 626-791-1214x258.

Oh, Costco run today, anybody? Call my cell 626-429-4244.

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 many of her meds as can be given through the IV. She is on a clear liquid diet, but only drank a little bit of apple juice and ate a few spoonfuls of chicken broth for dinner tonight. She likes to sleep and is weak, but did sit up at the edge of the bed for a few minutes and used a walker to get into the bathroom. That's about as much activity as she could handle.
The gastro surgeon had doubts about Denise's vomiting being caused by Superior Mesenteric Artery Syndrome (SMAS?). I also got quite an education about what a J-tube is and is not. Denise already had a G-tube and a J/G-tube (combo, the J-tube being inserted within the G-tube). I thought it was the same as a G-tube, except placed to the jejunum instead of the stomach. But it's not that simple. Placing a J-tube is much trickier than placing a G-tube and can cause more long-term problems. The gastro surgeon thought it'd be better to give Denise IV nutrition instead, as she's so frail that she might not do well during a surgery. Earlier today the gastro surgeon discussed the case with the USC doctor, who thought that Denise would do well to stay on the TPN for at least a month (start at the hospital, then have nurses continue it at home).
Today we signed up to start a caregiver with Denise. She sounds super. But Denise isn't here to care for right now. Ironic, isn't it? We need lots of wisdom & guidance in what to do next. We're kicking around some ideas about how many hours a day to have a caregiver for Denise, and now whether to pay to retain this one that can work the hours we think we need, or pass & start looking again whenever Denise is well enough to come home again. We're also considering finding somene to stay with us once my aunt's gone to take up the slack with meals, housework, kids, errands, etc. A live-in caregiver from the agency isn't much more per day than paying hourly, and can help with the tasks. We've also got a couple other possibilities to pursue. I never thought I'd be worrying about these things at this stage in my life, that's for sure.

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 more.

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 go up. Potassium’s down from 3.9 to 3.2 since Saturday. Sodium after a couple sodium IVs was 134. She’s feeling tired & weak, didn’t eat much except at lunch, and threw up both during the morning and evening.
There was a cardiology appointment today. Interestingly, he wasn’t too concerned about the heart status. Apparently the EKG was OK. He was more concerned with pulling for us to get Denise’s J-tube inserted sooner rather than later. He’s a real nice guy and has been on Denise’s case (in a good way) since she arrived at Huntington’s rehab.
A caregiver (this is different from the home care nurse that's been visiting to change the bed sore dressing & check heart status) was scheduled to come in yesterday but that didn't happen. We got a call yesterday morning saying that the weekend person that was doing the scheduling pulled our person and put them with someone else. Sorry. Good thing my aunt's in town or we'd have been left high & dry. We're getting a free day out of it, though. And I'm left wondering about the terms "caregiver" and "caretaker." I've heard of ill people having caregivers and inns having caretakers. Are they about the same? And shouldn't the person receiving the care be referred to as the caretaker, since they're getting care from the caregiver? A new caregiver showed up today. She was very nice but isn’t able to work the hours that we’ll need. One thing after another, right?
A new home care nurse came today also. I guess that either they rotate around, or perhaps the previous home care nurse didn’t have the right license to deal with IV equipment and blood draws. She was also very nice and Jacob took to both her and the caregiver. Always a good sign when a kid likes you. My aunt had to drew 8 or 9 tubes of blood from Denise for tests to see about the increase in calcium and the electrolyte status. I don’t know what a Vacu-tainer holder is, but my aunt needs one but the lab wouldn’t provide one to the home health care nurse. The new home care nurse that rotated in today thought it was crazy that the lab wouldn’t provide one (and upon hearing Denise’s history also thought Denise might have been sent home early).
My aunt was on the phone with the case manager yesterday. At one point, said that we have the option to take Denise back to emergency and get her admitted to the hospital again. Denise already has a hard time commuting in the car and waiting for appointments, so we don’t want to put her through another waiting room experience in the emergency room. Hopefully the J-tube will prove to be even better than the IV and everything will be manageable at home. I guess that at one point the case manager stated that I didn't really have to take Denise home from the hospital. I think I've got it pretty well-documented on this blog that I hoped that she could stay through the New Year weekend. I was told by a rep from PacifiCare and a friend-of-a-friend that works in medical insurance billing that if a doctor says there's no medical necessity, she could stay but we'd have to pay for it all out of pocket. Anyway, I'm thinking of all the pleading I did with the doctors, nurses, insurance, and case manager, clearly asking to keep Denise in the hospital until after the New Year weekend, *especially* in light of all the problems we had with the previous weekend's discharge, and nobody told me I had the option to not take her home? That gets me pretty cheesed off (grumble, frown). I've had people tell me to speak to the hospital's PR department, the hospital's patient rights ombudsman (I tried that Friday before I had to pick her up, but their office closed a few minutes earlier), and lodge a complaint with the insurance commission over how these two discharges have gone. All in good time, and we are definitely getting our paperwork & thoughts organized to do those things. But first, we're spending our time & energy on what will help Denise.

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). So there will be another series of blood tests. Our hope is that the lack of mobility and weight-bearing is the cause. If so, the problem would probably be correct itself. Valley fever causes granulomas that excrete a substance like vitamin D that makes calcium go up, so that’s one of the things that we hope to rule out. By the way, Denise’s high calcium makes it harder to feed her. All the high-protein, high-calorie drinks we can find are also calcium-fortified. That just makes her problem worse. So if you’re aware of any supplements that might be good, please let us know. While I’m on the topic of supplements, let me throw a shopping task out for everyone. One of the problems Denise is facing is that if she downs a can of supplement, the volume prevents her from being able to eat much else. We’re aware of a powder called Scandishake that’s over 500 calories per serving, without having to make her consume all the volume (just sprinkle the powder on whatever she’s eating). We can’t seem to find it anywhere but online stores. Being a computer teacher, I’m all about online stores, but I’d like to get a few packets lickity-split to start giving her and I can’t find it anywhere. If you know of a local store that sells it, please contact us.
She had another appointment today with a GI doctor. Looking at Denise, he also wondered if Denise was released from the hospital too soon. He thinks that Denise’s vomiting is due to the problem of her being so malnourished & thin that a major blood vessel is pressing down against a part of the intestine and causing it to collapse (Superior Mesenteric Artery Syndrome). So he’s recommended a J-tube (inserted into the jejunum portion of the intestine). This is better than a G-tube inserted into the stomach. So we’re scrambling to try to get that taken care of. The problem is that a J-tube insertion is a little more involved than a G-tube, and requires a surgeon. And surgeons are busy, busy, busy. So we wait. And we all pray for an opening, and pronto. For dinner tonight, Denise is dining on a decadent normal saline IV drip lovingly infused with a delicate dextrose & potassium sauce.
Her pulse is at 100. Still too fast, but it’s been coming down. That’d be nice if the trend continued.
The home care nurse asked us if we’ve been measuring urine output. No. We don’t have a gizmo for measuring. The home care nurse doesn’t remember seeing the gizmo in the supplies. So here’s a scavenger hunt: We need a “hat,” and I guess it’s not one that Denise will be wearing on her head. So if you can procure the kind of “hat” we need, please let me know. Chances are that Jacob will try to wear it on his head, and you bet I'll snap a picture and post it for you all to see.

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 that we started a few hours ago. It made a difference for the better. Tonight Denise was still tired, but looked better and said she felt better. We talked about the possibility of needing to put in a j-tube again. She doesn’t like the thought, but if that’s what it takes, then so be it.
I start back to work tomorrow, and Gracie’s starting up at the preschool, too. Jacob will continue in the home daycare that one of our neighbors runs. I’m anxious about balancing work in with the mix that I’m already trying to stay on top of. I’m usually pretty efficient & organized. But having Denise home with two small children is way more hectic than what I thought it would be. Toss up some prayer for me along with Denise. We’re trying to figure out what to arrange for home care once my aunt goes back to her family & work later this week.

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 wrote “STAT” on the orders, which I learned is some sort of Latin that’s supposed to mean “ASAP” or “PDQ” or “Make It Snappy!” But apparently “STAT” means “Wait a long time and call the wrong phone number to report the results.” Whoever made out the paperwork wrote at the bottom of the order to call the lab results in to the doctor, but then wrote our phone number instead of the doctor’s phone number. My aunt tried calling to get the results over the phone, but the photocopy we were given with the facility’s location had a phone number that was impossible to read. We tried several times, but kept getting in touch with Nordstrom’s instead of the UniLab. My aunt also tried calling Denise’s primary care doctor that we met the other day, but got the on-call doctor for the weekend, who happens to be Denise’s previous primary care physician, at least on paper (he’s the one that’s officially listed as the PCP, but she’s only seen a couple times, only to get referrals to the ObGyn doctors…). My aunt tried to get him to OK another IV for tonight, but he couldn’t do it until the lab results came in. Vicious circle. She indicated that the doctor didn’t seem to understand the gravity of Denise’s struggle over the last few months, and spent plenty of time going over Denise’s history. At one point during their conversation, he asked who Denise’s primary doctor was during the whole time that Denise was in the hospital. My aunt told him that he was. It was funny, and a little bit pathetic. Not any fault of the PCP, in all fairness. But it’s frustrating that a case of this magnitude can go on and never even reach the PCP’s attention. Just one more crack that we’re trying not to fall through. Anway, we finally looked up UniLab online and found out that they were bought out by someone else, we got the correct phone number, and called them up to get the ball rolling again. Finally around 5:30, somebody called us back with the lab results. By that point, if the IV were to be ordered, it wouldn’t get delivered until midnight. So we’re just waiting until tomorrow.

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 with the first discharge that we’d get the PT & OT at home. With this discharge, we were told that Denise was too good to go back to hospital rehab, then that home rehab would be lined up, then that Denise would have to be evaluated first, then that someone would call us on Monday. Several days later, it finally happened. The Rehab Without Walls people said that the authorization didn’t come in until recently. Paperwork, paperwork.
We went to the neurologist appointment today. It was a long wait and Denise was fatigued. So she got up out of the wheelchair and walked a long way around the waiting room with the walker. Then she sat in a regular chair, then stretched her legs by taking a walk again. That was a nice period of activity for her today. The neuro doctor stopped Denise’s anti-seizure med (Topamax). He said that it can cause loss of appetite. He started her on two other meds instead (Lexapro & Lamictal). One’s an anti-seizure med and the other’s a mild anti-depressant that increases appetite. He thought that Denise was exhibiting symptoms of clinical depression.
Because of Denise’s electrolyte status and probable dehydration, an IV has been ordered. My aunt started it at 10:15 and it’s supposed to run for ten hours while Denise is sleeping, or trying to sleep. She gets uncomfy and I have to help turn her every hour & a half or so during the night. Yeah, I’m tired too. Should make going back to work real interesting. But considering what Denise has gone through and what she’s going through, I don’t have much to complain about.
A big positive is that it looks like we’ve got our stethoscope all lined up. Thank you to those that responded to the need!

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 morning and after dinner tonight. She was able to hold lunch down quite well, though. I brought that up to the case manager today (actually, we’ve been dealing with the supervisor for the case manager that was in charge of Denise’s first discharge), who thought the simple solution was TPN through an IV, or a g-tube. Denise had g-tube trouble earlier, and a j-tube worked better… until the g-tube migrated). Anyway, a feeding tube can work at home, but we hope that it doesn’t need to come to that again.

As far as cold hard stats go: pulse 112, blood pressure 110/70, sodium low at 129, potassium up to 4.6, liver normal, calcium’s high at 11.5 (too much calcium can make a person tired), didn’t do a magnesium workup, so we don’t know about that.

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 referrals to be cared for by the ObGyn while pregnant with the kids. He also came back from vacation just today, making it really difficult to make the appointment to see him within a week of discharge. That was one of the problems I had with this discharge the other day. Anyway, her new doctor heard all the details and was very thorough. With Denise's complex history these last 5 1/2 months, it took a long time, but the doctor was a champ. Denise was a champ, too. She was in pain sitting in her wheelchair for several hours driving, waiting, meeting with the doctor, and driving home again. During the visit, we found out that she weighs 90 pounds, and that's with clothes and shoes on. That's 11 1/2 pounds lighter than when she was discharged from rehab on Christmas eve. Also, her heart rate is up to 124 again. During the hospitalization, it was down into the 90s due to heart meds coreg & digoxin, which were discontinued at discharge. So the doctor thought that a consultation with the cardiologist would be a necessity. That was instructed on the first discharge, but not the second, interestingly.

It seems that almost every body system that could fail did fail at some time during Denise's hospital ordeal. So she has to be seen by many, many specialists. The amount of appointments that we have to schedule per the discharge instructions is intimidating. Please pray that all the times will fall into place. Denise is easily tired, so we can't cram too much into a day. I have to start back to work on Monday January 9th. My aunt is trying to stay until January 12th. Because Denise was in a coma for about half of her hospital stay, she doesn't know how to answer all the questions and she needs to have one of us (uh... preferably my aunt because she knows the jargon) accompany her to appointments to talk about her circumstances with the doctors. And talking with the doctors isn't the half of it, as we're spending so much time just trying to get post-hospital business accomplished so as to keep from falling through the cracks again. Sometimes lately I've thought that Denise is no longer being overseen by physicians, but by insurance administrators. Yikes!

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. She did lose precious ground as far as physical ability and endurance are concerned. But she likes being home. Food is staying down reasonably well, though she'll gag on a pill once in a while and throw up. There is no nausea. Naps are frequent. Overall, she seems to be getting a little stronger each day. Today she went outside for the first time since being home, and it was a beautiful day. Tonight while opening a door for herself, she was able to walk backwards with only one hand on the walker. That's a major accomplishment.
The kids stayed with friends until early on Monday so that Denise could adjust amid a quiet atmosphere. Many thanks to our friends for providing that for us. We also had my cousin and another friend quietly rotating their services to cook, clean, run errands, and be our support so that I could focus on Denise. Again, many thanks. Since PT & OT couldn't be lined up on such short notice, a parent from my school that is a PT came to our house a couple times to help Denise work out. Thank, thanks, thanks! Now my aunt the nurse is in town for a week to tag-team with me in caring for Denise (including a very short haircut at Denise's request) and doing tons of phone calling.
Though many things went better with this discharge, we still went out on the weekend of a holiday with all the "regulars" that are familiar with Denise gone for vacation. So in the rush to get Denise out, some things still fell through the cracks. My aunt & I have been on the phone all day today (the first "business" day after the weekend for medical offices) trying to line up appointments, secure needed services, obtain records, call about bills, etc. Tomorrow will be filled with appointments & phone calls as well. And the next day. And the next. Wish us luck!