Re-rehab, Feeding tube details, Bedsore itchy

Tonight Denise is back in her old rehab room 4124 at Huntington Hospital's La Vina building.She welcomes visitors M-F 3pm-8pm and any time on Saturday & Sunday.Park in the La Vina lot off of Pasadena Ave. Parking is free on weekends.Phone number direct to her room is (626) 535-6458.Click here to get to a page on the hospital's website that lets you send her email. Be sure to put "Denise Williams room 4124" in the subject line so the volunteers know where to drop off the emails. She loves getting them, whether from family & friends or complete strangers.I learned today that the feeding tube might have been causing just enough irritation to cause the vomiting. She's been hurl-free all day, and able to eat increasing amounts. She needs it, as she's malnourished. Now that I've said that,...

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J/G-tube in wrong place, Eating & Hearing OK

In 1980, a one-hit-wonder band called The Vapors put out a catchy little song called "Turning Japanese." Denise & I love that song, and today it has newfound meaning for me. A portion of the lyrics:"I got your picture, I got your picture.I'd like a million of you over myself.I want a doctor to take a pictureSo I can look at you from inside as well."Wish granted...The GI doctor provided a procedure report and some pictures, like this one of the inside of Denise's stomach. The business end of the feeding tube came out of place and was between the stomach and the ab lining. Bad news, as that placement would leak food into that space, causing...

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No j-tube reinsertion, No vomit, Sat herself up

Denise went to have an endoscopic look-see and the jejunum feeding tube reinserted. However, the tube was not placed. There was some infection at the insertion site, and they decided to wait. The nurse said that the gastrostomy feeding tube had "migrated" and gave me the doctor's number. I hope to find out what that's all about tomorrow. In the mean time, she had no food today until dinner time, and was able to hold that down, as of the time I left. My understanding is that yesterday's lunch and dinner stayed down also. Might be that the tube itself was causing the vomiting... who knows?Strengthwise, things went well today, as Denise was standing...

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New feeding tube on deck, Less cookie-tossing

Hopefully everyone's returned home from the Thanksgiving weekend, and no worse for the wear. In the last post, I listed a few things I was thankful for. I read some of the posts from the opening days of our ordeal in July, and from the middle of September, just to compare with how things are now. Yes, she is still very ill, I don't really anticipate her being home for Christmas, and we have lots more cheerleading to do for Denise. But she's way, way, WAY better now than before. This was punctuated by a visit from a friend today that said the last time she saw Denise, she was on a ventilator, unable to speak or move, heavily sedated... it was great for them to be able to interact again.Tomorrow morning a new feeding tube will be put in. The feeding tube came out today, by accident. The nurse...

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Thanksgiving picture, Wound vac restarted, Hearing?

Thanksgiving Day: Here's a picture of us with Denise's mom, dad, & one of her sisters. You know how it is... the probability of getting a good group picture is inversely proportional to the number of members in the group. So I've got my eyes closed. Other than that, it looks pretty good, don't you think?I was thankful that Denise is not only still alive, but able to speak, eat, breathe without extra oxygen, doesn't need any chest tubes, doesn't need dialysis anymore, isn't jaundiced, can pass food, can move, doesn't need a swan catheter... the list goes on & on. I'm thankful that even if, even *when* things take the ultimate bad turn,...

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Throwing up, Paracentesis, Tired

Denise's feeding takes center stage in tonight's post. Even sitting in a chair, she's not holding things down very well. Gastro tube feedings during the night were restarted recently. Her doctor from USC came by to check on her, and noted that the gastro tube feeding wouldn't work as good as the jejunum tube feeding. Weeks ago, while she was still at USC, they put in a J/G tube so feedings could go to either site. The thinking was that if she were getting g-tube feedings into the stomach, there was only one sphincter muscle to keep food from going back up her throat. But if she were getting j-tube feedings into the jejunum (beginning of the intestine; food's next stop after it leaves the stomach), there would be two sphincter muscles acting as roadblocks to keep food from being thrown up....

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Temp 102.4, Lumbar puncture, Movie date

Last night's temp went to 102.4, but today's temp hasn't crossed the 100 mark.Lumbar puncture was performed last night. I got to help keep Denise in a little ball shape so that the needle could more easily get between her vertibrae. The first vial was a little pink from some blood, the other three vials were crystal-clear. If they were cloudy, that'd indicate the presence of white blood cells (and infection). Today the ID doctor said that she had 3 white blood cells. That's apparently on the upper end of being OK. More WBCs means bigger infection in the spinal/brain fluid. (Yes, a "lumbar puncture" is the same as a "spinal tap." Fortunately, Denise only went to three, and not to eleven). :O)She's been having trouble holding food down, so g-tube feedings will resume again. Tonight she was...

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Moved from rehab to acute care room, Fever 102

Denise's anticipated move from a rehab room to a "regular" room came early this morning.Her new room is 530 east, and the room phone number is 626-535-6070.While she's capable of working to get stronger in rehab, there are some issues that they'd like to keep a closer eye on, such as monitoring seizure activity and her fever going to 102 last nig...

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Picture of Jacob, Slight fever,

Here is a recent picture of Jacob to start off tonight's post. Were the camera faster, you would have seen that bottle up the other nostril. Trust me, I scrambled and even tried to get him to do it again. But this is the best we could do. Still, pretty good. Fathers live for photo ops like this one here. At least, fathers like me live for them. Well, if you've never met us, now you know what Denise, Gracie & Jacob look like. I'll try to get a picture of myself posted one of these days. Hopefully it'll beat this picture of Jacob.The bad news first: A slight fever is going on... just 100.6. But it's enough to whip out the cooling blanket and...

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First family meal in four months, Seizure questions, McD's

Today's lunch was the first meal that we've eaten as a family in four months. For other reasons, it today was a much better day than the previous couple of days. She sounded more animated, said she felt more alert, had a bigger appetite, and some lab results turned out a little better. Nightly gastro tube feeding has been discontinued (but the tube's still in). PT assisted her in taking five steps, and she's getting to the point where she can roll herself from side to side. It's a workout, but she can do it.Earlier today she asked me to bring her a burger and an A&W root beer. She only ate about a third of the burger, but tonight she ate most of her pork & spiced peaches dinner (a favorite whenever we go to Cracker Barrel). I asked her what ideas she had for Thanksgiving this year....

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Four Months in the hospital, Denise doesn't want to hurt anymore

Today marks four months in the hospital... a third of a year.Not much today was earth-shaking. No seizures, blood pressure improved to 110 systolic (coreg's being held off if she dips below 105), potassium keeps bottoming out (3.2). She's tired & gets dizzy if sitting up too long. A limit on fluid intake has been set at 1500ml/day, I assume in response to her unusual desire to keep drinking water the day of her seizure (water's good for you... but it is possible to get too much). The wound vac has been gone for a day or two (the last time I saw it was when Denise had the seizure on Wednesday. I don't know why it was discontinued, but she now has an Acticoat dressing instead. The Acticoat dressing is super-fancy, and in researching it, I just now learned that it has silver in it. What......

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On seizure meds, tired but doing better

After yesterday afternoon & evening, today was great. Denise was sleeping most of the day today. But when she was awake (tired, but awake), she was answering questions appropriately, smiled & giggled a few times, never seemed "spaced out," and was not repeating things. Her only complaints were dizziness and feeling tired. She wanted to sit up at the edge of her bed (and did much of the work herself) to eat breakfast. At lunch time, she was in a wheelchair. During a PT session, she tried wheeling herself around a little bit, but couldn't due to the IV in her arm. The PT had a balloon and they were hitting it back & forth. The next time I bring the kids, I'm bringing a punching balloon, too. Maybe I'll pick up one of those small parachutes so we can all play with that together, too...

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Seizure, EEG

Denise had a seizure approximately 3:15pm. I was with her through it, as was her wound care specialist (and a batch of nurses & doctors toward the end). I regret that I didn't remember to look at the clock at the onset, but I would estimate perhaps a minute in length. She was laying down to have her bedsore checked, and appeared to be reaching and looking up behind her and to the right, as if trying to grasp something at the head of the bed. I asked if she was trying to look at something, and then noticed that her eyes were rolling up, arms & hands contracted toward her body. I told the wound care tech that she appeared to be having a seizure, she concurred, and called for help. Anticipating being asked to leave, I quickly grabbed my things as people poured into the room. Nobody asked...

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Better day, Loopy, No more isolation

Denise said she had a much better day today. The schedule of therapy resumed, so she rode in the wheelchair, bathed & dressed herself (she was especailly proud of doing her socks by herself). One of the PTs from USC popped in for a visit. Denise said she loved the visit but felt loopy. Read on.Isolation is a thing of the past, it seems. When we visited we didn't have to wear the gloves, gown & mask anymore! Jacob continues to get more comfortable with mommy. The lack of all the isolation measures probably help. Both kids sat on the bed next to Denise. Gracie snuggled. Jacob kept taking the bed phone off the rail and saying, "Hello," then hanging it up again.Denise had one vomiting episode today, not eating much, no fever, still on amikacin for the pseudomonas, ab/pelvic CT scan showed...

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Creeping numbness panic, Great EF improvement

Of the several hours of therapy scheduled, very little happened. Denise just wasn't feeling well or able to get comfortable. The magnifying glass isn't helping her see print very well, and that was disappointing. She noticed that glare is a problem, and it's easier to see at night in dim light than during the day in bright light. She had some vomiting episodes throughout the day & couldn't really hold anything down. She was very discouraged about that late this morning. A paracentesis was performed this afternoon and 4 liters of clear fluid were drawn from her abdomen. Tonight she had a panic because (probably due to dehydration) she had a creeping numbness moving on her chest & up her throat. She called me from her bed phone (couldn't reach the nurse call button... it was there, but...

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Fever crept up, but so did Denise's spirits, Kids visit

Fever going up a bit. She was at 101 tonight for the first time since leaving USC. We don't like to see that. She feels pretty good in spite of that, though. They're taking blood & urine samples for testing. Other stats include a BP of 120/88, heart rate of 110, and administration of coumadin, coreg & lanoxin (digoxin) for the heart, plus the usual antifungal & antibiotic meds. She had a much better day today than yesterday. Still minimal therapy, being a weekend. Here nurse team today went way above & beyond, taking care of Denise plus four other patients while also taking up the slack while the therapists were on light duty for the weekend. Denise said she felt sorry for the nurses, likening them to a parent having to take care of five different babies, each in a different...

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"Miserable" day, Weekend visiting, Rosebud Parade

Denise felt like she was having a miserable day today. On the heels of yesterday, that's the way it would seem. Yesterday she had about four hours of therapy. Today she only had about an hour & a half, but we were expecting to have four to six hours, just based on the trend since she arrived. Apparently weekends are much lighter. Even though the patient to nurse ratio is 5 to 1, there were so many people coming to work with Denise yesterday that if she needed something, someone could take care of it. Because there were so few therapy sessions today, there were fewer people around and it took much longer for someone to get to her, so she felt helpless & frustrated. One of her college buddies that has a disability came to visit yesterday and today. Denise wasn't particularly "encouragable"...

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Took 5 steps, Rolled wheelchair, Loves rehab

Denise has already made a tremendous amount of progress in the rehab facility, and she loves her therapists. Yesterday she only had two hours total of physical & occupational therapy. Today they had four or five hours, from what I could see from the schedule. She took 5 steps with assistance in a walker, got to go outside in a wheelchair, rolled the chair down her hallway all by herself, bathed herself while sitting up at the edge of the bed, and she darn near turned herself on her side by grabbing the rail.I cheated on the visiting hours and was there for some of the therapy (at Denise's invitation... but I still tried to stay out of the way). I am impressed by what I heard... the therapists are upbeat, personable, and related to Denise in ways that I'm sure made her feel like she was...

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Huntington Visiting Information, Phone Number

Denise is now at Huntington Hospital in Pasadena. Room 4124 in the La Vina building (best parking lot is off of Pasadena Ave.) Phone number is 626-535-6458 directly to her room. Visiting hours M-F are 3pm-8pm. Visiting hours Sat & Sun will be decided when she finds out more about rehab schedule. She'd like to eat dinner alone (served 5pm-ish). Denise has requested no visitors tomorrow (Friday Nov. 11), as she'd like to get to know her new surroundings and meet everybody that she'll be working with. Visiting hours were set by her, based on her desire to have her therapy sessions consist of only her and her therapists. Again, don't feel offended... she even told one of the prayer moms that was planning on coming today that their visit should be postponed (and Denise was asking...

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Moving to Huntington Hospital 7am Thursday

I found out tonight that Denise is scheduled to transfer from USC University Hospital to Huntington Hospital at 7 am Thursday morning. I can ride in the transport with her. She's looking forward to the ride, as she says she doesn't remember the last one at all. When Gracie heard about the ambulance ride, she got excited & said she wanted to go, too. I spent a long day with Denise today, anticipating a possible move that didn't happen. We talked about everything under the sun, and it was both wonderful and difficult. One of the respiratory therapists came by to say goodbye, and that was a tear-jerker moment.Somewhere along the way in our journey, I think I remember someone saying that every day in the hospital adds three or four days to the stay in rehab. With that in mind, Denise is eager...

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Rehab plan: Huntington, then Casa Colina

Here's a picture of Denise & Gracie during a recent visit. Look at that smile on Gracie's face!Now for the latest in the rehab saga, as of this evening... Looks like she'll transfer to Huntington Hospital in Pasadena for a while, then to Casa Colina when she's ready. The doctors and case managers all felt that a good step for Denise would be to get out of an acute hospital setting and into a setting where rehab takes the center stage. But Denise is still sick, and until some current health issues are fully resolved, they want to make sure that acute care is down the hall, instead of an ambulance drive away to another hospital. Casa Colina...

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First Visit to the Workout Room

She took her first trip to the workout room! Her dad & I cheered her on. I got to wheel her there & back. Today was the first time I've ever pushed her in a wheelchair. She gave her all and toughed out the pain. With some help, she stood for about two minutes. Among the exercises she was doing, my favorite was with the Cybex Kinetron II. It's like a Stairmaster, but you can sit down while doing the workout. Her PT was trying to get her to press down on the foot paddles but she couldn't do it. Another PT that was sitting off to the side with us said, "Denise, there are bugs on the floor! You've got to step on them!" Denise still couldn't get the paddles to move and joked, "I guess there'll just have to be bugs on the floor, then." A minute later, she got them moving, and even did an...

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Pointers for Calling & Visiting Denise

Since Denise has been doing so much better during these last three weeks, many of you have asked about visiting her. She'd love it! Here are some pointers for the remainder of the time that she's at USC University Hospital: Denise requests that calls & visits fall between 10am and 8pm. I usually call ahead to see if she'll be available and feeling up for a visit. A short phone call is a great alternative to a visit, as you'll save on drive time, gas, and parking. The phone number to her floor is (323) 442-8780. Ask for Denise Williams in room 753. You can also email Denise to let her know that you care: pullingfordenise@yahoo.com She sounds a little "out of it" at times, and there are still a couple hoses & bandages here & there. That makes some people uncomfortable....

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Rolled herself along in a wheelchair

Denise got to take another wheelchair ride today, and rolled herself along in the lobby. It was only for a few feet, and it exhausted her, but she did it. Her parents & a couple friends from Coalinga also took her to the chapel, and went to a park that's adjacent to the hospital. Those trips are great for her morale. Today she got an IV inserted. I don't believe this is a PICC line this time. My thinking is that PICC lines are designed to stay in for a while. Admittedly, I'm probably reading too much into it, but my thinking is that maybe they're not anticipating her staying much longer at all. Still no work on the echocardiogram, vision, or when she might be moved out to the rehab facility. Her voice sounds stronger and more normal each day.Tonight she was tired. A couple of her college...

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Asking questions, Rehab field trip,

Yesterday when my dad was visiting, Denise asked lots of questions about losing the baby (he was on hand with me for that ordeal). Today she asked me questions about what happened to her during the time that she was sedated. Part of what I told her was that a few times during the months that she was at Arcadia Methodist, everyone thought we were about to lose her, but her doctor & the team were able to help pull her back every time. Just for the record, her doctor at USC said that she was probably just ready to get better at the time of the transfer, so he was going to get out of her way & let her do it. I think he's selling himself short, because she's getting better by massive leaps & bounds. Anyway, it was hard for her to digest the gravity of her situation. I haven't wanted...

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Heart looking better, Jacob said "Hi Mom."

Tonight when I took the kids to visit, Jacob said, "Hi mom." Not bad for a little guy that's not even 19 months old yet. He sat on Denise's lap for quite a while without squirming, and he seemed to be more comfortable with her than yesterday. I remember asking you for prayer on this point a few nights ago. It's working! Keep it up! Gracie was her usual happy self. Denise's doctor walked by and saw Gracie in the room visiting Denise. He could tell that she was eating this up. She loves wearing the gown & gloves. A couple months ago, she wanted to be a nurse. Last night she said she wants to be a doctor instead. Denise's dinner included a glass of red wine tonight. That really surprised me. I didn't think you could get wine in a hospital. My mom, dad, and nurse aunt were on hand to help...

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Wheelchair ride, Went outside, Wasabi toothpaste

Denise got in the wheelchair today! They just rolled her along with her tree full of meds. Not only did she get a wheelchair ride, she also got to go outside. This is only the second time she's been outside since she went into the hospital on July 18. The only other time she's been outside was when she was transferred from Arcadia Methodist. There's an entire team to thank for this milestone... doctors, nurses, therapists, techs... Here we have Denise with some physical & occupational therapists. I mentioned weeks ago that I'd love to name names and give credit where it's due, but there's probably some privacy & liability issues with...

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Casa Colina on deck, 4 liter paracentesis

I spoke with Denise's case manager today and she also said that a move to an acute rehab facility is planned in about a week's time. Casa Colina in Pomona CA is the anticipated venue. I've heard good reviews so far. They just revamped the facility in March of this year. I'd be interested in your input if you know anything about this place. Denise is both excited and scared. She hopes they have a pool for her to use. She used to be a lifeguard and was on swimming teams, so she swims better than I do. But I cannonball and dawdle about in the water infinitely better than she does. Along PT lines, she stood for a little while today and told me that they might let her get into a wheelchair. Indeed, I saw one in her room!Her paracentesis yielded about 4 liters of fluid (15 days since last paracentesis)....

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Transfer to rehab facility? Solid food, Bible - large print

I crossed paths with Denise's doctor last night (after 9pm... I swear that the guy lives at the hospital!). He told me that he talked to someone from our insurance about getting Denise out to a rehab place. I asked how long we were talking about... a month or what? He said a week or so! I at once couldn't believe it, and found it reasonable to expect, given the tremendous strides she's made during the last two weeks. I remember that while Denise was at Methodist, there was talk about moving her out. Due to some of her needs, not just any long term acute care facility (LTAC) would work. She needed to go to a place that also specialized in getting her off the ventilator, and I believe that the feeding tube may have been a sticky wicket as well. Our needs & desires are to find an excellent...

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