Discharge redux

Denise is home again! Though the discharge time was 9am, it took a while to get everything ironed out (meds questions, discharging doctor's signature, etc.). We signed the discharge papers at 1:05pm, the wheelchair guy came about an hour later, and we were off! We just walked/rolled in the door about fifteen minutes ago! Later this afternoon a home care nurse is coming to check on Denise, which sets my mind at ease.
The whole drive home in the rain, she was thinking of restaurants along the way that she might like to eat at for dinner. She's not eating much, but that she WANTS to eat is a good thing! The kids are with a friend today & overnight so things are calm & quite. My cousin (webmaster, guest map guy, email list guy, real good cook) is here catering to our every whim and unreasonable demand.
Keep pulling for Denise this weekend so that things go 200% better than they did last weekend.
It's been a long 5 1/2 months. Now I'm gonna go snuggle with my wife! :O)

Discharge changed to Saturday 9am

Plans changed, life happened, I'm going to pick Denise up from the hospital at 9am tomorrow morning. Again, pray that everything that we've requested to have checked and in place will be taken care of, AND that we won't have to go back for any more stays in the hospital. Last weekend's discharge/E.R./readmit experience was an abysmal disappointment.
Today Gracie promised she'd "be nice to mommy this time." She was really traumatized by seeing mommy so sick & throwing up all the time last weekend, and it seems that she feels responsible for her going back to the hospital. I've reassured her that nothing happened to mommy because of her, except for smiles on mommy's face.
Jacob's pediatrician said that x-ray is iffy... a finger could be broken, or not. But since the radiologist won't be in to read the x-ray until Tuesday, we won't know for sure for a few days. In the mean time, he's getting Motrin and if the swelling increases or he doesn't start to seem better, then I'm supposed to take him to the E.R. So far, so good. He's adapting and starting to use his right hand to carefully eat and hold toys again as of this evening.

Discharge today, Jake's fingers

Prayer time.
I got a call around 10am saying that they wanted to try to discharge Denise at 1pm today. Notice was too short, and I've spent all my time running around and on the phone today. I must admit that while I'm excited about wanting her home, I'm gun-shy after last weekend's discharge disaster. And here we go again, with another holiday weekend discharge. I guess that she's supposed to be gone before midnight. There doesn't seem to be anything we can do about it. I don't want to sign anything until all the ducks are in a row, so pull that line for us. More details later about what went on today. I just wanted to throw the concerns out there early.

Right now I'm off to take Jacob to the doctor. Gracie crushed his fingers in a door this morning, and I'm not sure if there's a break or what. The doctor couldn't see him until 3:30pm today. After last Sunday in E.R. with Denise, I figured that an appointment with a doctor beats waiting half a day in the E.R. to be taken care of.

PT visitor, SMA syndrome? Granulomas? Med change-up

We're still waiting to see if Denise comes home this weekend, or stays through the weekend. The USC doctor paid another visit today and said he thought that everything revolves around nutrition, and he's concerned about her staying in the hospital and losing ground. True. The hospitalist then came in and said she put in a request for rehab. A PT came by to do a rehab evaluation. The good news is that Denise is strong enough to not need to go to rehab. The bad news is that if she doesn't go to rehab, she either stays in the regular room and only gets PT/OT once a day, or she goes home for this weekend (and I already stated my concerns in a previous post). She used her walker to do a circuit around the nurse's station. It's not nearly the distance she did in rehab, but it's much farther than the couple of yards that she walked yesterday.
Now here's a very cool twist that makes not going to rehab not so bad... One of Denise's college buddies is a PT. She's not currently employed. She lives in Pasadena. She made herself available to work with Denise. Talk about a godsend! She came by today and had Denise do some bed exercises, which Denise loved. Thank you, thank you, thank you!

A G.I. doctor talked to me about yesterday's test with the barium. The barium went down fine, but was delayed at the duodenum (the beginning of the small intestine). They rolled Denise to one side, and the barium continued nicely through the slow part. He said that there's a possibility that Denise's vomiting might be caused by something called SMA (Superior Mesenteric Artery) syndrome. There's an artery that crosses over the duodenum. In really skinny people (like Denise is now), the artery can press on the duodenum so much that the duodenum compresses and makes for a blockage, and sometimes some pukeage (did I just make up a word?). I learn something new every day! I think I remember hearing about this also happening during pregnancy. Another possible cause for the vomiting is that the cocci (valley fever fungus) did go to the brain and damage the basal ganglia, which the G.I. doctor described as the vomit control center. Since Denise's case is rather rare, there's not much data that the doctors can gather from other cases and apply to helping her. Instead, it seems that she'll be the source of data. Perhaps her case will make it into medical journals and be of help to other people that have Valley Fever. By the way, a cardiologist today said that Denise seems to be the only person on record to survive having disseminated Valley Fever while in the third trimester of pregnancy. And the cocci went to the brain on top of it all. She's our miracle girl!

I'd like to say that I learned another new thing today, but I really don't understand what I'm about to write. I haven't researched it, so I'll just try to spew out what I heard. Denise's test for ionized calcium (not regular calcium) came back high. There are a couple of things that can cause this. The spores associated with Valley Fever can cause granulomas (where? I don't know... I forgot to ask). These granulomas put out something like vitamin D... which is associated with calcium. OR immobility and lack of weight-bearing by the bones can cause the bones to leach out calcium, also making for high calcium test results. I think there was supposed to be another possible cause, but doggone it, I can't remember.

Other developments:

• Off of Coreg & Digoxin meds that were helping the heart... pulse up to 100, and they'll keep an eye on it to make sure it doesn't go too high
  
• Seizure meds: Depokote stopped. I think the new med is called Topamax. Great! I can see it now... another prescription that I won't be able to fill if she's discharged over another holiday weekend.
• Denise was in better spirits today, didn't vomit, and doesn't have to stick to the liquid diet anymore. In spite of that, a doctor recommended that a psychologist visit to evaluate her for depression.
  
• Potassium went lower again today... 2.6 (normal is 3.5 - 5.3)
• There will be some electrolyte, metabolic & endocrine tests on deck
• My favorite: Hair's growing back... the bald top & back of her head is starting to get peach-fuzzy!

G.I. tract seems OK, Appetite returning

This morning Denise had to down some barium and they performed some x-rays to see what's going on in the G.I. tract. As of tonight, nothing's wrong. She's holding her liquid diet down. We slipped up and she ate some of the Payday bar that I brought for her. This was after the barium went in, so it was OK for her to take things by mouth, though solid food may not have been OK quite yet. This afternoon she asked if I could bring her some antipasto salad. It's a good sign that food is sounding appetizing again. But since she was still supposed to be getting only clear liquids, I couldn't bring her the requested food.
I'm still waiting to hear/see the results of the ultrasound, echocardiogram, and today's procedure with the barium. Denise said that the doctor from USC came by today and opined that Denise may have just had a bout of flu. The neurologist tonight said that so far, the G.I. tests aren't showing anything bad. He thought Denise was just anxious about going home and said he's seen all sorts of things happen at the time of discharge... vomiting, seizures, etc. He also thought that from his slice of the pie, there'd be no reason to keep Denise in the hospital and she may get a discharge tomorrow or Friday. He's not calling the shots and that's not official. I'm not too keen on the idea of going home on a holiday weekend again. In addition to the pharmacies being closed and nobody answering the phones, Denise's primary care doctor is on vacation until January 4th. So that would make it hard to have him come by to get briefed on Denise's case before discharge and schedule an office visit with him within a week of discharge, as we're supposed to do. The case manager might not have enough time to pull together home PT, OT, and RN check-ups for the holiday weekend, either. Denise's potassium is still low (3.2 yesterday, 3.0 today, and that's with the IV going).
Denise is tired and not as animated as usual. She's a little slower on the draw when it comes to answering questions, too. In the back of my mind, I wonder how much is attributed to being tired after a possible bout of flu, not eating for a few days, being whipped just from being in the hospital for this long, and how much damage was done by the cocci. She's also much weaker than she was at the time of discharge. In rehab, they had her walking around the corridor twice each day, at the least. Today a PT came and they only went a few yards, then turned back to go to the room. Denise was wiped out after that. My hope is that they can get her back into the rehab section if there's a bed and let me take her home next Tuesday when everything will be open and all the regular people will be on hand for support. That would also give Denise a chance to regain some of the ground that's been lost and we can also be sure that food's staying down and see how the electrolytes go.
Tonight Denise finally opened the last of her Christmas gifts from the kids & me. Gracie was very excited to see mommy opening the gifts that she picked out herself... a box of See's candy and an angel figurine. I didn't even know what the gifts were, because a friend took the kids shopping for me. I got Denise a nice wool coat. I know, I know. We're in southern California... why would she want a wool coat? Well, she asked for one, so I got one, and she loves it. But she's so malnourished that she's swimming in it. About a week ago, the USC doctor likened her to photos of prisoners after being released from WWII concentration camps. That's a good description.

Flu? Urinary tract infection, Call for PT/OT visitors

Hopefully Denise just had a bout of flu. She's on a clear liquid diet. She not eating much, but what she is eating is staying down and she's feeling a little better, though very tired. They put her on an antibiotic (Levaquin) due to a urinary tract infection. Her hospitalist (doctor in charge of her medical status, not her doctor in charge of her rehab status) ordered her up an echocardiogram, thinking that Denise's heart meds might not be necessary. That'd be nice. Apparently the hospitalist was on call the weekend of the discharge, but wasn't notified of Denise's vomiting. Also, she and my nurse aunt both looked at the "illegible" Tigan prescription and both of them were able to read it, and didn't understand why the prescription wasn't filled. The hospitalist also pointed out that we should notify Denise's primary care doctor of her case and have him visit her in the hospital and keep checking in with him in the future. That should be interesting, as I don't recall Denise ever actually going to see him for anything... she's always just dealt with her ObGyn. The hospitalist was wonderful about answering the seemingly endless heap of questions that we had. I've got my work cut out for me... obtaining records, arranging appointments, a slew of phone calls to make, paperwork to fill out. Fun, fun, fun!

I brought some Christmas gifts for Denise to open. She was tired, but got through them and was in a better mood. When she was done, she said she wanted to try walking. There's nothing to stop her from doing that, thankfully. But then lunch came, she ate, and was too tired afterward to walk. Since she's in the regular part of the hospital, there's no rehab. PT & OT would only come once or twice a day for a few minutes. Going back to the rehab part of the hospital apparently isn't an easy thing to do, and doesn't seem likely. I hope to help Denise work out instead. The bummer is that I think I've picked up the illness that Jacob had, and don't want to expose Denise. If you have a PT/OT background and might be able to visit Denise and do some exercises with her, let's talk.

Back in the hospital, Christmas in E.R., RX goofiness

Denise has been admitted back into the hospital because she's nauseated and can't hold any food or meds down. She's in room 4514 and visiting hours are 11am-8pm (there's no rehab going on, so you won't be interrupting anything). Phone number to her room is 626-535-6716. Email her at pullingfordenise@yahoo.com and I'll print it out on and read it to her.

I took Denise to Huntington's E.R. yesterday morning at 10am. She started vomiting the night before her discharge (Friday night), and was still vomiting the morning of discharge. This was thought to possibly be due to dinner not agreeing with her, the excitement & nervousness of going home, holiday rush, etc. During the ride home from the hospital (Saturday morning) she said she was nauseous. At home, she couldn't keep her food or her meds down at all, and was exceedingly tired (some of the 12 meds that she's on cause drowsiness). We were up much of the night Christmas Eve, trying to get her meds into her, cleaning her up, changing sheets, etc. I've never done laundry in the middle of the night on Christmas Eve before, and I hope to never have to do that again. By Christmas morning she was no better and the home care nurse and the doctor on call told us to go back to the hospital E.R. to get her anti-nausea, electrolytes, anti-seizure, and other meds administered via IV. More on the nausea issues below.

We were in the E.R. all Christmas day. I thought that Christmas would be slow in the E.R., but I was wrong. It was so crowded that people were on gurneys along the walls of the hallways. By the way, all the E.R. nurses were excellent! Even with the crowding and stress, they hustled and exhibited top-notch people skills. Though Denise catnapped most of the day, she was sad that she missed Christmas with the kids. Early on, a nurse said that it might be possible to get Denise filled up and back home the same day. But later on it became apparent that we wouldn't make it back home that day. Denise started crying when I told her that it looked like she would have to be in the hospital at least overnight. She said she didn't want to go back to the hospital; she wanted to go home even if she was throwing up all the time. At one point she said, "Just tell me if the doctors think I'm going to be in the hospital for the rest of my life." Every once in a while that horrible thought has oozed into my head, too.

She was finally admitted back into the hospital (regular room, not rehab) at 7pm. This was during the shift change, so it was another hour before I could really talk to anyone. Fortunately, her nurse last night remembered Denise from taking care of her shortly after the seizure. Icing on the cake (or frosting on the cake... take your pick) is that Denise really liked that nurse. Overall during Denise's hospital stay, I've felt like whenever there's been a change of venue and new people start taking care of her, it's taken a crisis event to get everyone to realize how much medical attention she needs. So I'm very glad for the nurse being familiar with Denise's case.

Well, we're left to find out why the nausea & vomiting started up on Friday night. It could be flu. It could be side effects of meds (though I wonder why this wasn't going on before, assuming she was on the same regimen of meds). With all the tubes, needles & hoses that have been in her, the healing & scarring may have caused an adhesion that's blocking the flow of food. Could be a few other things, too. They took Denise for an ultrasound and tonight Denise told me that they think there might be something wrong with her spleen. I haven't had the opportunity to catch the new doctor yet, but the spleen thing is old news. I believe that previous ultrasounds showed an enlarged or somehow abnormal spleen, but upon further examination turned out to be nothing of consequence. I also remember that at USC, one of the doctors said that Denise would get urso (bear bile) to help thin out the sludge that was coming from her spleen.

Some ranting about paperwork: When Denise was discharged, her nurse was great about going over all the meds with me from a paper called the "Medicine Administration Record." I felt well prepared to take care of her. There's also another sheet entitled "Discharge Instructions" that also listed the meds. Almost all of the meds matched up, but two didn't. I didn't notice this until yesterday while sitting around in the E.R. The Med Admin Record didn't have the prescribed anti-nausea med listed (Tigan in suppository form, just in case she couldn't hold down meds taken by mouth), but it was listed on the Discharge Instructions. Magnesium wasn't on the Discharge Instructions, but it was on the Med Admin Record (and it was also prescribed). I didn't get the prescriptions until the time of discharge, so I was running around like crazy trying to get the prescriptions filled on Saturday. Saturday of a holiday weekend, mind you. Some of the things that Denise needed were kind of out-of-the-ordinary, and weren't in stock, or only a few pills could be given to us. There wouldn't be enough to get us through until the next shipment, which will be Monday night. On Saturday the pharmacist told me that the Sav-On drug stores will be open Monday night, but their pharmacies will close early, leaving us high & dry until Tuesday morning for some meds. I guess that in that respect, it's fortunate that Denise is back in the hospital. They're providing her with the meds to get through the weekend. In addition, the prescribed special wound-dressing supplies are apparently only to be found at medical supply stores, and every one I called was already closed for the holiday weekend. I was freaking out, because her wound dressing was coming off and drainage was seeping through the dressing. Fortunately, the nurse aunt talked me through what to do to patch it over, and the nurse on call talked me through finding a small supply of what we needed among the materials that were given to us as we left the hospital. Back to the meds, then... I went to several different Sav-On stores to get prescriptions filled as best I could. Then Saturday afternoon when I called Huntington's pharmacy to get the slack taken up... closed. Sunday morning came, still closed. I even called today, still closed. During the weekend, I also called the nurse station, the case manager, and I don't know how many medical supply stores and pharmacies to try to get the anti-nausea meds and her prescribed wound dressing supplies. Many, many, many phone calls and lots of driving later, I found out just today that the prescription for the Tigan anti-nausea stuff was still at the first pharmacy that I went to. It wasn't filled on Saturday because the pharmacists couldn't make out what was written on the prescription. Frankly, I didn't notice it looking any more illegible than any other doctor's script that I've ever seen, but I guess that the pharmacists would be the pros at deciphering the writing. Anyway, when the pharmacist tried calling the hospital's pharmacy phone number on the prescription, they were closed, as already stated. It was only today that, because of showing the pharmacist the Discharge Instructions with Tigan listed, that the pharmacist was able to fill the prescription for the anti-nausea meds. That leaves me thinking, "Hmm... If we'd had the anti-nausea suppositories on hand (and/or in end), would we have been in the E.R. on Sunday?" Again, since there's a possibility of flu, ileus, etc., there's no telling.
So here you go... some helpful hints to keep in mind if you ever find yourself or a loved one anticipating a discharge from a hospital: Get the prescriptions in hand and get them filled a couple days before being discharged, not the day of. Do NOT go home on a holiday or on a weekend. Wait for a regular old day, smack-dab in the middle of a regular old workweek. That way the pharmacies will be opened, the regular medical staff that already knows you will be available, and if you need help, someone will probably be around to answer the phone. Wait until the vomiting stops... the hospital has plastic-covered pillows & mattresses that clean up fairly easily. Not so at home. Finally, do what you can to celebrate Christmas someplace other than in an E.R.
I'd hoped to be able to post a picture of the family tearing into Christmas gifts, or tearing into Christmas dinner. Sadly, Denise & I missed Christmas with the kids yesterday. But I did realize that the Christmas photo I posted the other day was the wrong one. So here's the right one, with the border & greeting. I apologize if I don't get the greeting cards out in a timely manner this year. The neat thing, though, is that with this blog, I don't really need to include a Christmas letter to tell you what our family's been up to.

Going back to the E.R.

Denise hasn't been able to hold down any food or meds. As a result, it's been recommended that we go back to the E.R. at Huntington this morning to get Denise checked out.

Home for Christmas Eve!

Here are pictures taken in the last moments of Denise’s hospital stay. We're glad she's here instead of in the hospital. But Denise had a rough first day at home. She was nauseated the previous night at the hospital, and the ride home was bumpy & upset her stomach. Both of the kids are feeling a little under the weather, so I had quite a challenge today. There was also a problem getting all her prescriptions filled. I didn’t get the prescriptions until today. When I went to pick everything up, I found out that some of what Denise needs is not very common, and there were only a couple tablets… not enough to get us through the Christmas weekend and an early store closing before the delivery truck arrives on Monday. In addition, Denise has been throwing up each meal, pills included. Drainage from her wound was seeping through the dressing, and the bottom of the dressing peeled off. The home care people won’t come out on the day of discharge, so I had my aunt talk me through what to do in order to patch things up until tomorrow. We’ll probably have the home care nurse arrive right as we’re opening presents with the kids. Anyway, perhaps in the excitement to get home, the day’s meds weren’t sent home and the wound dressing slipped by unnoticed this morning. It was checked last night, and the wound specialist said the dressing should be good for a few days… maybe Denise was tossing and turning all night.

On the positive side, she’s home. That’s a pretty big point. She also had a fair share of visitors come by… neighbors, families from school, old college buddies. Thankfully, they sat with Denise & the kids while I went on my trek to try and find the meds that Denise needs to get through the weekend. We also got to take some pictures of Denise awake & smiling with some of the people that have been caring for her these last few weeks in the hospital. And the kids are excited tonight, both because mommy’s home and because it’s Christmas tomorrow. We have a safety lock on the fireplace screen to keep the kids out. Gracie wanted me to be sure to remove the lock so that Santa can come in.

With all that’s been going on during the last weeks, one very practical offer of help came from a couple of the moms from my school. They said that if I gave them my Christmas shopping list, they’d get the shopping done for me. Not only did they do that, but they also refused to accept reimbursement when it came time to settle up. I told Denise about that and we decided that we wanted to take the money we would’ve spent and give it to charity instead. I have a “Christmas gift” catalog from an organization called Samaritan’s Purse. They have “gifts” you can give (via donating money) to people that are a little different… help build a school for impoverished children, build a well, send survival kits to families struck by disaster, buy a goat for a family, etc. The gift we decide on struck both of us as the perfect one to give, in light of all the medical help that Denise has had. On behalf of all the people that have helped us out, we’re taking a small portion of what we’ve been given and passing the blessing along.
“Buy an Airline Ticket to Save a Child’s Life”
The organization coordinates the efforts of doctors, hospitals, churches, and host families in order to fly children to the U.S. to receive life-saving surgery. We’re sharing in the cost of a ticket.
Have a wonderful Christmas Eve!

I'm leaving to pick up Denise!

I just talked to the hospital a while ago, and they told me I can come & sign the discharge papers with Denise any time. So I'm leaving to pick her up & bring her home! Let's pull for a smooth transition from round-the-clock professional care at the hospital to being stuck with little ol' me at home.

Discharge scheduled for tomorrow, Sick Jacob

Here is this year's Christmas picture. It was taken a couple of weeks ago in the courtyard just outside Denise's rehab building.
The countdown continues! One more day until Denise can come back home. Denise's PICC line was removed today. No more tubes, needles, or hoses! She's scheduled to be discharged from the hospital tomorrow, probably around noon. She didn't visit home today because she had too much to do in the hospital. That's probably just as well... Jacob's running a fever. Just when I thought things couldn't get much more interesting or hectic, they did. Now I'm nervous about Denise coming home with a sick kid in the house. Pray that Denise doesn't get sick, nor the rest of us (me, Gracie, or Denise's parents & grandfather, who will be coming this weekend for Christmas).
I ran by Arcadia Methodist to drop off some Christmas goodies & a card to the CCU staff today. It's been a long time since I've dropped off junk food there, so I thought it was about time. Hmm... It's been a while since I've brought junk food to the USC crowd as well. The Arcadia Methodist nurses thought that Denise was looking pretty good, and were excited to see the picture of her walking that was posted to the blog the other day. One of the nurses said that if I bring Denise in, she'll wonder why she'll be surrounded by crying women. Denise doesn't remember being there, but the crew there sure remember her, and apparently people from many parts of the hospital are still following Denise's story. Anyway, there's a neat thing that happened at Arcadia Methodist that made the news today. The hospital provided treatment to a twelve-year-old girl that survived being shot in the head. The surgery she received wasn't available in her own country. Click here for the story. It should be available for the next two weeks.
Denise doesn't get hospital emails on weekends, and we anticipate her being at home after tomorrow. With these things in mind, I updated the link for sending her email. Clicking the "Email Denise at Home" link toward the right of the web page will now let you send email to her at home. And yes, I'll print it on foofy paper for her.

Home visit for three hours

This picture is blurry and dark, but you get the idea: Happy to visit home! You can click on the picture a couple times and it will enlarge with each click (yes, that works with all the pictures that have been posted). The purpose of the visit was mainly to do a trial run with Denise in the house... easing into things and working the bugs out. The kids were gone visiting a children's museum with a teacher from my school, and came for the last hour of the visit. Gracie told Denise, "You're the best surprise!" One of Denise's therapists met us at the house and had Denise work through several scenarios... getting in & out of a normal bed, fitting through doorways, reaching for food in the fridge without falling over, and sitting at the dining table were just some of the tasks. We found out that in her current condition, our couch is way too low for her. That's OK... she's been wanting a different one, anyway. So she's adopted the recliner. That should make Christmas with the family at our place this weekend pretty interesting, as her dad and both of my parents usually angle for the recliner. While Denise was home, we had visits from neighbors and even a nurse from Arcadia Methodist (where this whole journey began), and he brought a mango cake. He said that it should help Denise load up on calories and put some weight back on. Oh, if you were here for the workday last Saturday, or for the weed-pulling party yesterday, Denise loves what's been done to the place! Thank you, thank you, thank you!

First car ride, School Luncheon, Landscaping

Denise got a pass to leave for a few hours today. So I drove her to my school for the Christmas luncheon. It was her first ride in a car in five months (I don't count the ambulance rides). When we got to the school, she got a standing ovation from the people I work with. The superintendent said that every year has a best and worst day. For him, the worst was a day on which we thought we'd lose Denise. The best was today, seeing her roll into the auditorium. Yup.

A bunch of my students are in a Brownie troop. They, along with some of their family members and one of my friends, were doing a service project at my house when I got home today. They pulled weeds, dug out unwanted plants, installed landscape lights, planted flowers, and even cleaned up! They wanted to plant flowers so that they spelled out "Welcome Home" but we didn't have enough flowers or time. So they wrote it in the soil instead (you can see "Home" in the picture). Unfortunately, most of the people that helped had to leave before I thought to take this picture. Thank you to everyone that helped give curb appeal to our house. Denise is going to love it when she comes home for a few hours tomorrow! The neighbors that live on the other side of the street probably are just as happy... they don't have to look at all the overgrown grass & weeds in the flowerbed anymore.

Picture of Denise Walking, Cold feet warm up

Enough pictures of Denise in a wheelchair or bed-bound. Here's one of her walking again! That hand off to the right belongs to one of our favorite people: a physical therapist that's been working Denise's tail off and bringing about glorious moments like this one here.
I got to speak with the rehab doctor that's in charge of Denise, as well as her physical & occupational therapists. I'm much more comfortable about the thought of her coming home now, and some of the reasons follow. The rehab doctor assured me that if anything's wrong, she's not going home. She's been good enough to be allowed to leave for our lunch & dinner dates. To address my concerns, he's going to let me take Denise in the car (now that I know how to help her get in & out of it). We can go somewhere for a few hours tomorrow, and the next day, and the next. Also, it's been longer than I thought it has since her seizure, and she's been doing fine. A nurse will be sent to the house to check on Denise each day, on top of the caregiver (that being me, initially) being there. Further sighs of relief came when the PT & OT told me that from their standpoint, she could've gone home a few days ago. Topping it all off was a visit from the infectious disease doctor tonight who told me that she's doing well (however will be on the antifungal meds for life).
Not much medically has gone on today. I haven't heard back anything from the endocrinologist that visited Denise a few days ago. Her rehab doctor also said that tomorrow we should hear how her liver's doing. She's still eating well and the food's staying down. When the kids & arrived for tonight's meal, Denise had already finished eating... but still packed away some of the food that we brought. As you can see from the picture, she could use the extra food & extra pounds.

Two laps, Five stairs steps, Cold feet, The bath story

For some reason, this blog showed only a blank white page for several hours today. I republished the blog, reloaded the web page, and everything seems to be back to normal. Sorry for the inconvenience.

Denise used her walker to complete two laps around the rehab corridor today. Her therapist also had her take five steps down and then back up the stairwell, using the handrail. All the food stayed down again today. In fact, we found a new snack that she loves. At Dollar Tree I found a wheel of Tiger Gruyere (pasteurized processed cheese food) and a bag of Bacon & Cheddar 'Tato Skins snack chips. She really liked opening up a little foil triangle of wannabe gruyere and spreading it on the 'Tato Skins chips. Loaded with protein, fat, carbs, and sodium... what could be better at packing on the pounds? By the way, her weight did dip under 100 pounds today. I've been told to not let a variance of a pound over a couple days bother me.

You're not going to believe this, but I've been having increasingly cold feet about her coming home this weekend, if it's a full-on discharge, anyway. Yes, after looking forward to the day that she leaves the hospital for so long, I'm wondering if a pass each day for a couple days to see how she does would be better... possibly a little longer in the rehab unit to get that much stronger and more confident, would be helpful after all, whether Huntington or Casa Colina. I definitely see the benefits & drawbacks of each scenario. Denise & I were talking about if she'd like me to ask about easing into life back at home starting with a pass this weekend instead of an outright discharge. She wants to come home PDQ, no doubt about it, and she has been working hard to that end. I know that past improvements followed by a few sudden crises definitely play into my uneasiness. I related those events to Denise (who didn't remember them or was unaware) and then she began to understand where I was coming from. It's just interesting that my uneasiness has concurred in one way or another with several concerned family, friends, and a doctor, all that wonder if this is the right time for the planned big step. It's been pointed out that in the insurance game, insurance might be playing the "home for Christmas" card in order to get Denise off the dole. Home for Christmas is definitely enticing. But I also like the security blanket of a more gradual transition from 24-hour professional care to little ol' me. The only thing we want more than Denise home is to make sure that she's not home TOO soon. What a balancing act, huh? I'm meeting with the PT tomorrow to start a crash-course in how to help Denise. In spite of not being sure what I think would be a good move right now, I look forward to learning the tricks of the trade so I can help her get better. Her ability to get around hasn't presented much concern in my mind. In fact, she's making tremendous strides, and for that I'm thankful! I'm more concerned about the medical things that I usually associate with staying in the hospital... the bedsore, the PICC line, the IV supplements on occasion, all wrapped up in the stress of everything she's gone through these last five months, and a seizure a few weeks ago. The wonderful thing is that, though she sees why there's some concern, she is in good spirits because of the increasing amount that she can do each day. The therapists & staff are awesome about encouraging her in her every accomplishment. Denise & I need wisdom, as well as her team of doctors, nurses, and therapists that will have a conference to decide what to do and when to do it.

And now for something completely different... The kids were having a wonderful bath time, playing with new toy boats that a neighbor gave them (thanks!). I put too much bubble bath in, so the kids had plenty of bubbles with which to give themselves beards, hats, etc. Keep the beards & hats in mind. The bubbles took forever to fade and clear. And when they did, (insert images from "Caddyshack" here), Gracie pointed & yelled, "Daddy! There's a poop in the tub! Look there's another! Eew" Yes, Jacob had dropped the deuce. And because of all the bubbles, there's no telling how long it'd been there. I got the kids out lickity-split, dried 'em (at arm's length), drained the tub, removed the foreign object, flushed, bleached, threw the kids into the *other* tub for another bath (an antibacterial liquid hand soap bubble bath this time), and things got back to normal. Tonight at bed time, after prayers & stories, the lights were off. Everything was quiet for a few minutes. Gracie was snuggling into me...
"Daddy?"
"Yeah?"
"I love you."
"I love you, too."
...silence for a few seconds...
"Daddy?"
"Uh-huh?"
"Can Jacob not take a bath anymore with me?"

Five Month Hospital Anniversary

Denise has been in the hospital for five months. We marked the anniversary (insert eye roll here) by going off the hospital grounds to the Thai restaurant again. On our date she ate well, and looked gorgeous as usual. During therapy she walked all the way around the floor again, and rolled around even more. She figures that if she can use a walker to go the 300 feet through the hallway, she can get around the house as well. She completed wrapping our Christmas gifts (it's part of her occupational therapy). I can see the improvement in the wrapping job over the last week. Looks like her coordination, strength, and endurance continue to improve slowly but surely. We want her to eat more.

Shortly after I got home tonight, the doorbell rang and a family sang & handed me a ham. Can life get any better? But my brain just couldn't get into gear... still swirling from all the thinking of hospitals, home care, holidays, the five-way conversation going on in my living room... and NOT thinking from lack of sleep last night. I couldn't place the faces. Oh no! The ham had a tag that I thought would have the names so I could refresh my memory & know who to thank, but it was the tag with cooking instructions. I feel so bad! So if you were the family that just blessed us tonight, please post a comment or email me!

100.3 pounds, 3 stair steps, Ramp completed

Denise *stood* on a scale and was excited to be back up to 100.3 pounds. In fact, she was standing lots today. She even went up and down three steps in the stairwell. She was scared, but she did it! During our visit, she needed to go to the bathroom. After calling the nurse for help, she swung her legs over the edge of the bed, used the bedrail to hoist herself up to a sitting position, pushed off the bed and shuffled (holding the bedrail & wheelchair armrest) & turned toward the chair. For the grand finale, she eased down into the chair... no plopping. She's getting good at this.
Her doctor from USC came by during our evening visit & gave us some suggestions about other things to feed her that will help get her protein & fat stores back up. I guess it could take a year to get to that point, by the way. He had an interesting story based on his training for the rangers: after HARD training in extreme conditions and little food, all the guys got a common craving for Reese's peanut butter cups. When he mentioned that, Denise went "Oooh, yeah!" I guess that sounds good to her, too. His concerns with Denise being at home revolved primarily around nutrition and her ability to walk & use the bathroom by herself. I must admit that I have a longer list (IV potassium, wound care, seizure concern), but he didn't think those were huge concerns while being at home. He also brought up that for the most part, insurance will stop at the hospital door and things will get very expensive once home care starts. When all's said & done, it's apparently up to the rehab doctor to declare her fit or unfit for going home, and he also spoke to Denise and expressed his belief in considering what the patient wants in making the decision. We've all wanted Denise home, but not before she's ready, of course. Denise said tonight that she can't stand being in the hospital anymore, and wants to go home ASAP. And who could blame her, as here home has a few nice new upgrades...

Back on the home front, or the front of the home, a wheelchair ramp was constructed! I've gotta say that even after all the hard work, I think it'd be great if she never needs to roll on it in a wheelchair. I'm confident that the guys that built it would feel the same. Furniture was moved & modified to make it easier for her to get around inside the house. As an added bonus, many little "cosmetic" items on the "honey-do" list were completed, and parts of our house look much better now! I talked to Denise over the phone as everything was going on and she started sobbing. Hopefully it was because of this practical expression of caring, and not because she's terrified of what I picked out to install. The kids had a ball while out of the house, too (playing with friends & neighbors, visiting mommy, Kidspace children's museum, Chuck E Cheese...). Many thanks to Robert, Dave, Mike & Mike, Jerry, Jay, Pat, Sal, Ennio, Deanna, Bobby, Connie, Nate, Stephanie, Margarita & Kelly for the parts they played in making today's mini-Extreme Makeover: Home Edition possible. If I forgot anyone, please charge it to my head & not to my heart.

One and a half laps, Movie night picture

It has been a good day! First of all, look at this picture from our movie night at the hospital tonight. For the first time, Denise completed one lap around the rehab floor corridor this morning (that's 300 feet) with rest stops! She did another half lap later in the day. She ate well, and the food stayed down. The doctor thought it might be fun to take Denise out for a short shopping trip tomorrow. We'll see about that. I'm not much into shopping. In fact, she wanted a nice wool coat for Christmas. So I ran to the local Burlington Coat Factory and found one like what she described within five minutes of entering the store. Then I stood in line fifteen minutes to buy it. Sad, huh? Anyway, don't tell her I found her gift so quickly. Her thinking that I spent hours shopping to find the perfect coat will probably be part of her enjoyment of the gift. I spoke with her case manager from her medical group and we figured that we'll still aim for her being discharged the weekend of Christmas. If she's not ready, we'll have a pass lined up to get her home for a few hours on Christmas day. I think (hope?) we've got all the bases covered. Earlier today, just as I was leaving to get the kids from daycare, one of my students rang the doorbell and dropped off a bag full of homemade chicken tamales from one of the teachers at my school. I was going to steam one for Denise, but tonight she wanted me to bring her Pizza Hut pizza. Not our favorite (that'd be Petrillo's in San Gabriel or Glendora), but it's local. I phoned in an order to the local pizza place and explained that I needed to pick up the pizzas at a certain time. It was important that they not sit under a heat lamp for a long time, because it's for my wife who's been in the hospital for five months and craved pizza tonight. We don't want to disappoint. When I picked up the pizzas, one of the boxes had "We're glad you're well now!" written on it. That was nice. Tonight we had a movie night at the hospital. We watched "Rudolph the Red Nosed Reindeer" in Denise's hospital room on a portable DVD player. The battery pooped out just near the end, and I forgot to bring the charger. Boooo! Hiss!
San Diego Zoo trip update: My aunt (the nurse) & uncle offered their place in Escondido for people to stay overnight to make a trip down there more bearable. They and my cousin also have passes to the Zoo & Wild Animal park, and can get additional people in for free if that would be helpful.
Vision note: Several people have mentioned that they'd like to bring Denise magazines or books with which to pass the time while in the hospital and recovering at home. It's difficult and frustrating for her to read, even with a magnifying glass. And when sitting still (not too often), she'd prefer to do art, which would also help her regain her coordination, strength, and endurance. Perhaps music or a book on CD for her to listen to while doing other activities are good alternatives to reading material. Just wanted to throw that out there.

Work day 8am Saturday December 17

Work day at our place 8am tomorrow to ready the house for Denise's return home on Christmas Eve. Contact neighbor Robert (rcnjole@allvantage.com), who's coordinating this day for us, or just show up any time at 2328 Oakhaven Drive in Duarte. Four of us so far... not bad for throwing this together last-minute, this close to Christmas. The more the merrier. The focus will be on the interior (except for the wheelchair ramp), though we do have some gardening & other outdoorsy things to do. Even coming for an hour would be enough time to knock an item off of Denise's honey-do list.

New exercises, Flashbacks, HELP: Zoo, Baby corral

For exercises, Denise had to get on her hands & knees and try to crawl. Her arms couldn't support her upper body and move at the same time. She's also starting to do squats. There was a stroll to end of the hall, rest, and stroll all the way back to her room. While standing, she wrapped her grandpa's Christmas gift. Not bad. One of her visitors dropped of a fruit smoothie for her. She gulped down lots of it too fast and threw up. After that episode, she wanted to finish the smoothie, but the nurse didn't think it was a good idea. Too much good stuff, too fast.
We're thinking of trying to get Denise to come home on December 23rd. The idea came up that if she came home on the 24th and then we needed some help at home, it would be harder to get. Denise said that the rehab doctor thought that might be a workable date. Part of me says, "The sooner, the better!" Part of me says, "Keep her at the hospital as long as needed... no rush." When she does come home, we need to get a caregiver. Any suggestions and recommendations would be greatly appreciated. Insurance *will* cover the physical & occupational therapists that will come to our home (YAY!), but insurance will *not* cover the caregiver that we'll need once I start back to work after Christmas vacation (DOH!). By the way, I got a memo from work the other day that said our insurance is going to go up in January. Never a nice thing to hear. But I'm confident that at the end of all this, I won't have much to complain about when it comes to how much of this ordeal has been covered by insurance versus how much I've paid into it over the years.

From a medical standpoint, things are slower paced in comparison to the PT & OT departments. Haven't heard anything from the endocrinologist yet. I think that Denise should be about due for another evaluation by the ophthalmologist. The neurologist popped in and all seems to be well. The only tube/line she's got in her currently appears to be a PICC line for IV fluids from time to time. Tonight she was tucking the line under her sleeve. I started choking up a bit. She asked what was wrong and I told her that a couple days ago I was reading through a bunch of old posts to the blog, from when things were really bad for her. Seeing her hands on the line tonight reminded me of times when she'd just be coming out of sedation, and I'd always have to keep her hands away from the lines or she'd try to pull them out (and sometimes did). If someone wasn't around to do this, she'd have to be restrained. She couldn't believe that. I also told her that it's good to see her sitting up, because early on her blood pressure was so bad that if they raised the head of the bed, her heart couldn't handle pumping the blood. But if she were laying down to make it easier on her heart, her lungs would fill with fluid and she couldn't oxygenate. I told her how thankful I was for the times when I saw the head of the bed raised even a few degrees, because that was a sign that she might live. How far we've come, huh?

I forgot to mention last night that a family from my school delivered a really nice Christmas tree to us. Thank you! It's by far the nicest tree Denise & I have ever had... full, cone-shaped, flocked (the kids are loving that!). It's much nicer than the Charlie Brown trees we usually get, or the fake tree that the kids have been using so far this year.

Free San Diego Zoo Trip: I'm looking for someone to take the kids to the San Diego Zoo over Christmas break. I have four tickets to the San Diego Zoo that are good until December 31st of this year. One ticket is for Gracie, and Jacob is under 3 years old, so he's a freebie. That leaves three tickets. Our minivan will be gassed up for your use.

Baby Corral Needed: Does anybody have a baby corral that I could borrow until Christmas? I need to put something around the tree. Jacob's trying to open the gifts a little early.

Sore from workouts, Endocrinologist visit, Advent cheating

Denise is working hard and sore from it. Think of finally going to the gym after a long absence and trying to max out on everything. She's discouraged because she feels she's not going to make enough progress to get home on the target date. Usually when she did weight exercises, she went for toning: lots of reps, little bit of weight. So she's not used to what they've got her doing now, which is in effect maxing out to the point of muscle failure to build the muscle up. She called my aunt (the nurse), who cheered her on and pointed out that she was only able to take a few steps a while ago and is doing much better now. Also, as she regains her strength & coordination, the progress will come quicker. As of today, she was able to walk all the way to the beginning of the third stretch of hallway, without rest stops. She rolled all the way back in her wheelchair. She's working on going up one stair step (see the wheelchair post below). They even have her squatting down & bending over to pick things up off of the floor. She's scared that she'll fall over & hurt herself. An endocrinologist came by today. My foggy understanding is that they want to see if the pituitary gland might get in the way of gaining weight.
My day's been filled with paperwork, calling around, picking up the medical equipment & supplies that she'll need when she comes home. I'm eager to get her home, but there's a ton of things to accomplish yet. I'm thinking of how to set up the house for wheelchair access (my aunt suggested having a PT & OT come here & give me pointers). I was in a chair for a while after a knee reconstruction a couple years ago, but Denise's situation is a different ballgame. At least I could leave the chair & use crutches to get through tight spots, I had enough strength to roll over carpets, a longer reach... there are quite a few things that I'd never thought of until talking to some friends today. If you have any helpful wheelchair or accessibility ideas, please post a comment. And just to be sure it's not overlooked, please read the post below this one, about building a wheelchair ramp.
This morning Gracie asked if her & Jacob could open the Christmas gifts yet. I said we have to wait until Christmas. She asked "How much longer until it's Christmas?" I showed her how to count the days until Christmas using the kids' advent calendars. We ate breakfast, the kids brushed their teeth, they were getting ready for the day, and the phone rang. While I was on the phone, Grace came into the room shouting "Merry Christmas, Daddy! Merry Christmas! It's Christmas, Daddy! Let's open our presents, OK?" She held up the advent calendar. All the little windows had been torn off. Nice try. Sounds like something I probably tried as a kid. After daycare, Gracie took all the ornaments off of the tree and hid them around the house, then we got ALL of the Tupperware bowls out to use as baskets so we could all have an Easter Egg hunt. I thought it was goofy, then profound. Christmas and Easter are significantly related. In fact, Denise heard an idea from MOPS (Mothers of Preschoolers) that we've been doing for a few years now. After Christmas, we cut all the branches off the tree, saw the trunk in two, and make a cross out of it to hang up until Easter, when the Christmas tree then becomes an Easter decoration.

Work day: Wheelchair ramp, etc.

A neighbor is pulling together a work day at our house for this weekend. The goal is to build a wheelchair ramp and possibly take care of some "honey-do" list items before Denise (hopefully) gets home the following Christmas weekend. Contact Robert at rcnjole@allvantage.com for details.

Discharge Dec 24?

Wow!
The rehab doctor told us that it's possible for Denise to be discharged to go home on December 24. Of course if there are lingering issues, that date will be pushed back. More details later. The news was just so encouraging that I couldn't wait to get home & post it!

Walk with no rest stops, Another lunch date

This morning's post covers yesterday, Monday Dec 12...
A first: Denise used a walker and walked from her room to the end of her hall *without* sitting down along the way! Then she walked most of the way back. I didn't realize this, but in previous perambulations, she had to take a few rest stops. Not this time. She started wearing athletic shoes and said that they relieve some of the pain of walking. The crew sitting at the nurse's station cheered her on. I love that she walks down the hall and the staff will stop what they're doing for a few seconds to watch & encourage her as she walks by. Denise said that she kept going because I brought Jacob with me and "dangled him in front of her like a carrot." Jacob does have pink eye, but the doctor said he can get back to the regular world after he's been using the eye drop medicine for about a day. He said it'd probably be OK to bring him to Denise as long as they don't give each other butterfly kisses. Better safe than sorry, we didn't have him touch Denise. He kept saying, "Mama! Mama!" as Denise was walking along. Yay! His comfort level with her keeps increasing! A parent from my school came by to deliver lunch for us at the hospital and occupy Jacob in the waiting room so Denise & I could be together during lunch. We had Greek food, which she had been craving since we missed this year's local Greek Fest. She ate about half of her food. "Only half of it?" you might ask. Yes, but bear in mind that those crazy Greeks give you insane portions of food, God bless 'em! A couple prayer moms from my school paid another visit. Denise always loves those times. By the evening she was tired, but sounded great... stronger voice, with more animation, than I've heard in recent weeks. She held all her food down. The neurologist came by and said that things are OK from his perspective. He commented that her temples are filling back in and she's looking increasingly better over the last few days. All in all, a very good day!

96 pounds, Pink-eye Jake?

Denise weighed in at 96 pounds today, after eating. We were excited that she made it back up to 100 a few days ago. After all that we stuffed into our pie holes yesterday, this news is disappointing. Move these items to the top of the prayer checklist: Nutrition (eat plenty without vomiting, avoid reinsertion of the feeding tube) and strength/endurance (she wants to do more on her own). You've helped pull, tug & hoist her through biggies like acute respiratory distress syndrome, loss of the baby, failing oxygenation, almost unworkable blood pressure & cardiac status, inability to speak or move, kidney failures, seizure, poor liver function, digestive halts, extended medically-induced coma, multiple life-threatening infections, high fevers, ventilator dependency... on and on. So by comparison, the nutrition & physical ability should be fairly easy, right?
Jacob seems to have conjunctivitis (us parents call that pink eye). I'm taking him to the doctor first thing tomorrow morning. In the mean time, we're keeping to ourselves around the house. This is just inconvenient for us. For Denise, it might be a little rougher. Jacob is 20 months old today. Denise has been in the hospital almost 5 months. Think of that... she's missed about the last fourth of his life.

Milestone: Lunch date outside of the hospital

Just look at this picture from our lunch date today. Ain't she cute? Whether you've been praying, giving medical care, or supporting her in any of the other ways, you've had a hand in making this moment. Thank you!
She threw up just a little bit before we even ordered. We like to think it was attributed to her being shaken up like a can of soda while going over all the brickwork & pavers during the wheelchair ride to the restaurant. But after that, she was fine. Tempura veggies, chicken satay, pad thai noodles, iced tea, coconut & Thai tea ice cream... it all went down happily and stayed put. When a person's as weak as Denise is, it's a workout just sitting up for long periods of time. So by the time we got back to the hospital she was ready for a long nap. Today was a big milestone and morale booster for her. Me too.
Oh, yes, she did like the dress that I brought. And that hat just about screams "My Fair Lady," don't you think?

Room change, Wound vac discontinued

Denise has been moved across the hall. Her new info:
Huntington Hospital - Room 4102 in the La Vina building (park in the lot off of Pasadena Ave.)
Phone number to room: (626)535-6434
Visiting hours: 3pm-8pm M-F, any time on weekends
Email her by clicking here, include "Denise Williams 4102" in the subject line.
Why did she move? Maybe they wanted her to have a nicer view out the windows. Maybe she needed an even smaller room. I don't know. The crew was very nice and even put all her pictures & a cardboard nativity scene she made a few years ago back on the wall. Tonight I added a mini Christmas tree with lights to her decor.
She didn't walk all the way around the corridor, but she did go farther than yesterday. Her occupational therapist had her make a poinsettia out of construction paper. Snacks are being given in between meals, and she held everything down. Today when her doctor (the one from USC) came to check on her, he ordered the wound vac discontinued. Now she has a heart-shaped bandage on her bohonkus.
We're excited about going on our lunch date tomorrow! We got a visit from one of the men from church today. He's getting up there in years (I just found out today that he was awarded a bronze star from Okinawa in WWII) and he told us that when he & his wife go out for dinner, he lets people know that he & his wife are going steady. Denise & I got a chuckle out of that. One of the families from my school left a gift certificate to the Thai restaurant that we'll be visiting tomorrow, and another certificate for another of their favorite Thai places. Thanks! Denise is anxious to (a) go home from the hospital and (b) get back to eating the varied cuisine that we love (whether from the restaurant or homemade comfort food). She wants to wear a dress tomorrow, and that means I have to pick something out of her closet. I'm intimidated by the task. I'm color-blind, pattern-blind, accessory-blind... you name it. Should be interesting to see if she's well-dressed or not tomorrow.

Halfway around the corridor

Short but sweet: Denise's longest walking trip yesterday was going halfway around the rehab corridor. Today they're going to see if they can get her all the way around using the walker. No vomiting, and Payday candy bars seem to be good to her tummy, and are favorable in the calorie and protein departments. For occupational therapy, she has the task of wrapping Christmas gifts for people. I think she should do it for tips.

Walking with walker, Weekend pass

Hey, everybody! I'm going out on a hot date on Saturday! It's true... they're letting me take Denise in a wheelchair out for lunch on Saturday. She heard there was a Thai place across the street, so she's made up her mind that we're going there. Notta problem. This afternoon I got the crash course in how to handle the wheelchair. After that, her PT allowed Denise to show off, using a walker to walk 78 feet (that's on top of the 50 feet she walked this morning). She did even more as I was leaving for the afternoon. It was slow going and took tremendous effort, but she did it. One therapist said that today was the day that her progress exploded. I've been staying out of the rehab during the day unless Denise invites me. So going from seeing her unable to stand without some help to being able to walk without people holding her up was incredible! Weeks (months?) ago, one of the doctors told us that we shouldn't fixate on the day-to-day numbers as Denise improves; the weekly progress is where we'd notice the differences. Certainly true.
She threw up her lunch today, so that was the only downer. Maybe under the circumstances, it was an upper? She's still working on eating smaller meals many times a day. The doctor had me bring in a bag of "fun size" Snickers. "Fun size" means dinky. Next time you're at Starbuck's, try ordering a "fun size" coffee and see if they understand that you mean "small." Anyway, when we went to the store to get the Snickers, Gracie asked if I'm in love with mommy. Yes. She then asked if I'm in love with her (Gracie). I found myself saying, "I love you, but I'm not in love with you." I had to chuckle at myself, as it sounded like a line from a date gone wrong.

Lunch out? Better PT day

Being able to eat a meal together as a family is a wonderful thing, and here's a photo to prove it. Get a load of this: Denise told me that her doctor thought I might be able to take her out to a restaurant for lunch this weekend! I just need to receive the wheelchair/walker orientation from a PT. I hope that's truly the case, and I can't wait to talk to the doctor tomorrow to find out if this is true. The last time we went out for a meal was on a trip to Big Bear the weekend before she started feeling ill.
Thanks for pulling for my wife after yesterday's frustrating day! You all are quite the tug-o-war team, and here are the results: She told me that the pain wasn't too bad today, that she had walked way farther than yesterday, and that the PT said she was almost doing it on her own for a time. Some people emailed their own personal rehab triumph stories, which I haven't been able to read to her yet. But I'm sure they'll be an encouragement. She's still eating well, no vomit. She will be on a calorie count tomorrow through Friday. Jacob called her "Mama" again, gave her kisses, and they played together for a while. Though he was weaned about six months ago, he still went grabbing for the food. Yep, I'm pretty certain that he recognizes Denise now.

Physical therapy pain, Reading, Jacob snuggles

Denise was in tears for a little while tonight. Her day was filled with PT & OT, and she was in pain, wondering how she ever got this weak. She said she couldn't believe that she used to walk. I had a knee reconstruction a couple years ago that had me laid up, but not to the point where she is now with her entire body. Months ago when she was still fully sedated, we received emails from some of you that had extended hospital stays. Several mentioned that getting through the primary medical problems were only the beginning, and that rehab often seemed impossible. If you've been through all that, could you please email Denise, stating your struggles and including some "atta-girl" words of encouragement to her?
Now for some really good stuff: She ate plenty of food and held it all down. With help and a walker, she walked from her room to a point that's past the nurse's station (cheers!). In a wheelchair, she rolled back from the workout room. She had plenty of caring visitors this afternoon and/or evening... pastor, her parents, my parents, & Jacob. She was able to read some of book with regular-sized print. She said looked blurry, even with her glasses, but she was able to read it. Lower lighting conditions help her see better. I'm encouraged by that. A few weeks ago, she couldn't even make out the words in a large-print Bible. She can't see pencil lines well, but she can see pen lines. This will be handy for the OT to know when working with Denise on writing & math tasks. My favorite bit of good news: Jacob excitedly called her "Mama" and even started snuggling up to her.

100 pounds, McD's comes up, God's "even"

Denise is back up to 100 pounds now! Tonight she ate most of her dinner, then I brought her a requested fajita & chocolate shake from McDonald's. A few minutes after downing most of the shake, everything came back up. McDonald's usually has the same effect on me. Too much milk shake, too cold, too fast, she said.
The kids & I visited this morning as well. We all went outside to the courtyard and her dad took a picture for our Christmas cards. My mom went by and wrapped Christmas gifts with Denise in the workout room. She also enjoyed a session with a counselor. He'll be visiting from time to time to listen to whatever is on Denise's mind and help give us some insights into coping with all she has been through.
This morning Gracie was making her bed and told me that her bedspread's like God. Huh? She pointed to the squared-up bedspread and said "Da-a-d (eye roll), look! It's even, see? It's not uneven" We did some Q&A but I couldn't figure out what she meant. Later in church, the pastor said we were going to pray, and Gracie immediately started in with the Lord's Prayer: "Our Father, who aren't uneven..." Ah-hah! If Gracie were around a few decades ago, she'd have been a regular on Art Linkletter's TV show. What Gracie said made me think of being in high school and finally realizing that Creedence Clearwater Revival's song "Bad Moon Rising" *didn't* contain the line, "there's a bathroom on the right." I still think of that part of the song every time I pass a rest stop on the highway. But I digress, as I often do... Also in church today, Gracie was getting kind of squirmy, drawing on the bulletin, demonstrating her newfound prowess at blowing spit bubbles... you know... all the stuff we did as kids in church. The pastor started talking about grace, and Gracie snapped to and sat up still, wide-eyed. After hearing "grace" a few more times, she cupped her hand over my ear and whispered, "Daddy, why's he saying my name so much?" I told her that he's just making sure that she's listening when he's speaking (sorry... I couldn't resist). A few minutes later she leaned over and whispered, "Is he gonna say my name again? I have to pee." We left.

Pulse down to 84, Christmas music

Earlier in the day, Denise seemed a little slow to respond to questions. Not knowing whether that'd be caused by being tired or if that was seizure activity, and remembering that her IV was disconnected yesterday, I called in to give the nurse a heads-up. I'm not usually paranoid, but I just thought maybe the anti-seizure meds were overlooked. Nope, she's still on the Depakote by mouth, and everyone's taking good care of her. That's why they're doctors & nurses, and I'm not. When I went again this evening, she was doing well... much more on-the-ball. She ate just about all her dinner, and had been eating well all day without throwing up. No fever, blood pressure was 120/70 (with coreg), pulse was 84. That's the lowest it's been in a long time. Her hands were a little shaky, but the room was quite cold, so I'll assume it was that and not anything seizure-related (OK, I still let the nurse know). I put a quilt on her to keep her warm. It's a quilt that was given to her at the beginning of her illness, made by people at the First United Methodist Church in Pasadena CA, where one of my mom's friends goes. The quilt has decorative knots tied in it, each knot representing a person that's promised to pray for her (Thanks! Keep it up!). Covered with quilt, covered with prayer... two birds, one stone!
Tonight we listened to the Jackson 5 Christmas album, and she was singing along with a few songs. A neighbor took the old LP and burned it onto a CD for us. It's got all the crackles & skips, just like she remembers from listening to it with her family as a kid. She doesn't like the skips because they make her miss some parts of songs. I like the skips because I'm not exactly a Jackson fan, excepting the guitar solo from "Beat It" (contributed by Eddie Van Halen). But just so you all know how much I love my wife, I'm on a quest to find the CD for her.
Denise had a visit today from a college buddy that has a disability, has difficulty walking, and who has served as an inspiration during these last couple months (actually, they've been inspiring each other lately). That reminded me of things that I forgot to write about. Weeks ago, Gracie noticed that Denise wasn't walking or standing, and started asking about that. I explained that mommy can't do some things right now because she was very sick for so long and has to get stronger, but she can get into a wheelchair soon (this all took place before Denise took her first wheelchair ride while still at USC). We have a set of dolls, one of which is in a wheelchair. Gracie was playing with her dollhouse, and that doll was the "Mommy" doll for a while. At one point Gracie asked if mommy would have trouble and need to walk like our friend. I said I didn't know, but probably not. But even if she did, our friend can still go to the park, the mall, the zoo, and get around and do things. So even if mommy had to walk the same way, she would be able to do all those things, too. Gracie said, "Okay," then went back to playing. No big deal.

Family dinner, Catheter removed, Pig pens

All of Denise's meals stayed down today! Our family ate dinner together tonight. Well, Denise had already eaten dinner before we arrived, but she nibbled on our food, too. We all got to sit at the edge of the bed together. Jacob was interacting well... still not a cuddle-bug like Gracie, but an easy smiler and increasingly comfortable every time he sees mommy. It was my dad's birthday today, so we called & sang "Happy Birthday." In different keys all at once so he could pick his favorite. My dad's big into southern gospel quartet music, in which families often form groups. Some families just shouldn't sing together. Even recovering from having trach in her throat for several months, Denise still sings better than I do.
Most of the workouts were done from the hospital bed, as she was very tired today. The urine catheter was removed today. I don't know if they're starting bladder training, or if it just came out, like the feeding tube did the other day.
Driving back after dinner, Gracie asked if she could see the piggies in mommy's pants the next time we visit. Yeah, you can read that last bit over if you like, but I *did* say piggies in the pants. OK, After lots of Q&A, I figured out that Gracie thought mommy said she was wearing "pig pens" on her bottom. What Denise actually said was that she was wearing Depends on her bottom. Part of the fun of being around kids is figuring out why they say what they say. It gave me a chuckle; hopefully you too.

Email list goofiness: Please be patient. Hopefully everything will be back to normal soon. Until everything's sorted out, I'm removing the link to subscribe for email updates.

11 steps, IV fluids stopped, Vomit, Email list goofiness

There has been some goofiness with the email list. Subscribers to the blog's mailing list either have not been receiving updates for the last few days, or have been getting multiple empty emails. My cousin Webmaster Mike (the Magnificent) is in contact with his ISP to try and resolve the problem. In the mean time, just keep checking the web site. And while you're there, be sure to click the ZOOMABLE Guest Map link and put in your pushpin if you haven't already done so. Remember to first zoom & drag the map around until you find where you live, THEN click to add your pushpin.

Sorry for no update yesterday. It got too late. Here's what happened during her first day back at rehab:

• With assistance, she took 11 steps (that's 28 short of a great Alfred Hitchcock movie... sorry... Denise & I love old movies).
• Rolled herself around in a wheelchair for a few yards, and got to go outside for some sunshine.
• Dressed herself & wore normal clothes again.
• IV fluids were discontinued (IV meaning "intravenous" and not "four" in this case), though I believe that she still does have the PICC line that was inserted last Saturday.
• Sat on a commode instead of using a bedpan. Don't mention that to her. If you do, you didn't hear it from me, OK? She asked if I could go to Home Depot and buy her a padded toilet seat because the commode seat hurts her bony behind. Again, you didn't hear any of this from me.
• She vomited at lunchtime today. I guess that about 15 minutes prior, she was talking about the TV show Fear Factor. Maybe thinking of what they have to eat on that show grossed her out. Maybe they served up something unmentionable for lunch. I don't know. But she did hold down two full meals and some small snacks throughout the day. So she's probably batting about .700 and that's not too shabby.

Thanks for the encouraging emails! She loved getting so many from people she hasn't heard from since before going into the hospital. Several were from total strangers, which is always a kick. The emails are one-way, as she can't respond to them. But you can still call. The other day when I wrote up the new room info (La Vina building 4124), visiting info (M-F 3-8pm, any time weekends), and phone number (626-535-6458), several people notified me that either the phone wasn't working or she wasn't answering. I found out why. Last night I noticed that the phone wasn't plugged in. I used my extensive technical skill to solve the problem. Still, she won't answer the phone when working out, eating, napping, or when she's just plain unable to reach the phone (with pillows propped behind her, she can't roll over & grab the receiver).

VHS to DVD transfer

Is anyone set up to do VHS to DVD transfers? I'm trying to get two of our favorite (out of print) Christmas specials onto DVD so Denise can watch them on a portable DVD player. Each special is 1/2 hour. Thanks!