Intensive Care: August 22nd - 29th, 2004

8/29/2004
I've just returned home with Bonnie from an enjoyable weekend with Nikki. Nikki is experiencing rapid changes now, healing very well. Her I.V. pain medications were entirely discontinued on Thursday. She now takes oral pain meds only (Oxycontin & Percocet), and has little to no ongoing pain. She was receiving a small I.V. bolus of morphine for dressing changes, but now doesn't even take that. Her rapid healing means less wrappings, and a faster dressing change- about 1½ hours now. Some grimaces and hand-squeezing are about her only response now. She now stays awake almost the entire day, with a short afternoon nap, and is sleeping better at night. She no longer has the nightmares that she was experiencing while on I.V. pain meds.

Nikki's appetite is improving, but slowly. Tube feedings still continue, but only from 6pm to 6am, allowing her appetite to improve. Last night, she ate half of a Wendy's Spicy Chicken sandwich & 3 chicken nuggets- very good for her. On Friday, she ate some spicy Chinese food, although she filled up quickly. She really doesn't like much of the hospital food, even when she does feel like eating. She drinks a lot, although not as much as she would like. She's restricted to 2 liters daily, and only milk, Gatorade or Boost (dietary supplement) - no water, which is what she really wants. The nurses hope to get the volume restriction dropped, as her intake & output are nicely balanced.

Nikki now walks a lot- whenever she wants, and mostly on her own. Her Foley catheter was pulled Thursday, making her much more mobile, and she no longer has to drag an I.V. pole with her. She's still restricted to the sterile hall of BICU, though, which she finds boring. The walks also led to an interesting event today- Nikki saw her face for the first time, in the reflection of a large picture in the hallway. This was especially interesting, as the nurses and I had just discussed the night before that it was time to let her see her face & help her to cope with it. This was supposed to be a topic of discussion for the doctors on Monday.

There are no mirrors on BICU, for obvious reasons, and we haven't offered her one up to now. I was with her on this walk, and I just started pointing out and explaining the work done to her face, neck and head. Now, her face really doesn't look bad, especially considering how it *did* look. However, she does have several suture lines, which look pretty icky with the black suture and blood dried on them. Also, the grafts still look a bit different from the rest of her skin, and really stand out. I explained how the joins between graft and ungrafted skin will virtually disappear when the sutures are removed, and the incisions cleaned. I also pointed out how her skin looks more "pink" every day, as blood vessels continue to grow in to the grafted skin. I admitted her right eye looks like hell, but pointed out the new lower lid & grafted upper lid- which both look great. She noticed that her right ear is only about half its original size, but commented that it still looks like an ear, and besides, she always wears her hair long & over the ears, anyway. Bottom line- she didn't seem unduly bothered, so I hope this attitude continues.

The nurses (and a few docs) have commented all along that Nikki seems unusually strong and resilient during her recovery from a truly traumatic injury. She almost always does more than is asked of her, and likes to do things on her own. The staff isn't just being supportive- they mean it. There's no doubt that she's progressing ahead of schedule, partly due to youth, a strong will and a good attitude. Of course, she has a few down moments… the other night, right after I helped her use the potty and get back to bed, she started crying quietly. When asked what's wrong, she sobbed "I can't feed myself, get a drink, or wipe my butt". I dried her tears, hugged her carefully and told her "I'd much rather feed you & wipe your butt ten times daily, than put a wreath on your grave even once." She smiled at that, and was better. Nikki is slowly understanding that she's very lucky to be alive after that terrible accident, and I hope that helps her to put everything else in perspective. I know from past patient care (and from being a parent) that you don't lie to a patient or child, but instead explain and clarify the situation.

No plans for this coming week that I know of. In another week or so, Plastics will be ready to separate her right eyelids. They'd like to do this in conjunction with some other surgery, to avoid anesthesia just for a relatively minor procedure. I'll find out more tomorrow, when I return to Cleveland.

Nikki has pretty well caught up on all of her cards and letters. She's still amazed at the volume, and of course, more come in every week. She's looking forward to getting back on a computer & chatting with some of the wonderful folks who have helped to support her (and us!) during her difficult times.

From Nikki, as well as Bonnie & me, another big Thank You to all of you.

8/26/2004
Almost daily, we get messages from people who have just found out about Nikki & want to know the whole story. Since not everyone has the time or knowledge to dig through the Daily Drool archives, I've decided to post all of my update messages to a web blog. The page also prominently displays the much-requested addresses to the hospital & our home. Hopefully, this will help the folks that only have part of the story so far. I'll add every new posting to this page as they occur.Thank you to everyone who has expressed interest in following Nikki's progress.

8/25/2004
Just a quick stop by home for a couple of real estate showings over the next two days. Yes, we're trying to sell our home, on top of dealing with Nikki. Back when our life was quiet and uneventful, we couldn't get a showing to save our lives. Now that we don't have time, we've had to turn down several. This week, we bit the bullet and scheduled two showings that we could make. Right after the last one tomorrow, Bonnie & I are back to Cleveland.

Many heart-felt thanks to everyone who has sent cards, letters and assistance in support of Nikki. She's really enjoying the cards, and we show her & read to her every card that she gets. She could read them herself, but her arms and right hand are wrapped & don't bend too well. She's amazed that so many people really care about her, without really knowing her. I've also had several requests for addresses again, as new folks become aware of Nikki's situation. Cards and letters can be sent directly to the hospital, as can appropriate gifts (stuffed animals, artificial flowers, etc). Other items should be sent to our home address.

For a change, Nikki should have an uneventful week, with no surgeries scheduled. This is healing time, both for her grafts and donor sites. She needs to grow some more skin to use in at least one more grafting surgery, where several small spots will need to be re-grafted. Plastic surgery was in today and removed the bolsters (large bandages stitched directly to an area) from her upper eyelid and back of her neck. These areas were grafted on Friday, and her doctors are very pleased with the results. They just want her to have "quiet time" for a while, to allow the grafts to stick & grow. Maxillofacial has also looked her over, laying some long-range plans for her facial repair in the future. The facial docs will attempt to use the suture lines already in place from plastics, minimizing scarring.

Nikki is now walking some, making a couple of trips between her room and the treatment room for her dressing changes (50 - 60 feet) over the last two days. Her changes occur once daily, take about three hours, and hurt a lot. I go through these with her, which really seems to help her. As planned, I have taken a personal leave from work in order to be with Nikki. I didn't qualify for FMLA (not employed long enough), so I'm taking a chance, as there's no position guarantee for me at the end of the leave. Things will work out there, though, and Nikki is more important to us.

Nikki also sits in a standard chair for up to 3 hours at a time. She's on a regular diet, although not eating much yet. She did eat a decent helping of mashed potatoes, mixed veggies & apple sauce today. She also gets a tube feeding during the night, which helps to kill her appetite. Her pain medication has been cut to 5mg/hr, and the sedative has been discontinued. She receives extra doses for her dressing changes, although she doesn't want much- it makes her sleep too long, she says.

We're back to the hospital tomorrow night, and will return home again on Sunday night. I'll give another update then, as there still seems to be a lot of interest from this group. Again, thanks to all of you for providing many shoulders for us to cry on, and to lean on.

8/22/04
Cards & letters keep coming in from Droolers and Cavalier people all over the world. When Nikki has to change rooms, it's going to be a really enjoyable pain in the butt to take down all of her cards to move them. It's starting to look like a basset and Cavalier paint job in there.

Nikki continues to do well, progressing as expected. She remains critical, as she still has some open burned areas & is at great risk of infection. She has been on strict isolation since admission, requiring full gowns and gloves during visits. During dressing changes, I also wear a hairnet and full face shield. She is fully conscious now, with a normal sense of time and a sense of herself. She's awake more than asleep, but still dozes around the clock, as do many hospital patients. She continues to get 8mg/hr of morphine and 1mg/hr of Versed for pain control- still a pretty hefty dose. The infected areas of her grafts have cleared up nicely, due to aggressive antibiotics and dressing care. No temps now for a few days.

On Friday, plastic surgery worked on Nikki from 10:15am to 6:30pm. During this session, they grafted her forehead, upper-right face, upper-right eyelid and the front & back of her neck. All of this skin came from her scalp, which was largely untouched in the accident. It's amazing how much skin they got from there. These were "full sheet" grafts, where the skin was transferred in large, single pieces to the desired area. This gives the best looks after healing, but is an uneconomical use of skin. Most grafting is done by punching small holes in the skin, allowing it to be stretched over a wider area. These holes are typically on a 2-to-1, or even 3-to-1 basis, greatly increasing the coverage of a piece of skin. Problem is, it looks a little like a tire tread mark when it heals- not bad, but not entirely natural. When grafting to highly visible, "look conscious" areas (face, neck), single sheet grafting is preferred, leaving no 'tread marks'. Stitches, rather than staples, are used for this detail work. She has hundreds of finely spaced stitches running around her scalp. Scarring from these will be minimal, with stitch lines following existing wrinkles and areas of skin shading. These guys really know their stuff!

Her forehead looks great. The area where doctors first thought she was burned to the bone actually had one last layer of tissue covering the skull, and they have high hopes that the graft will stick. It's already turning pink today, which means a blood supply is growing into the new skin. The neck areas are iffier, since every little head movement stresses them some. There will probably be partial success there, but we'll have to wait and see.

Nikki woke up quickly from this one, with no intubation needed after surgery. The plastics surgeon had a nice conversation with her on the operating table, immediately after finishing her. He really loved her personality & sense of humor, especially considering her surroundings. When Bonnie & I got to her room at 7pm, Nikki woke right up for us. Her greeting? "Dad, this sucks.... my head really hurts. Can we go home now?" The next day, she felt much better, and the three of us watched quite a bit of the Olympics over the weekend.

Nikki is on a regular diet now, but not eating much. She still gets a tube feeding, and isn't very hungry. Also, after 4 weeks of not eating, her stomach has shrunk a lot. I got a couple of bites of a noodles & cheese dish down her yesterday, along with a decent helping of peaches and a bite of green beans. She isn't allowed water; only electrolyte-replacement drinks like Gatorade, Boost and milk. Some of her 'lytes are low, and the docs prefer oral replacement to I.V.

This should be a week off for Nikki, a time for us to concentrate on her dressing changes and wound care. This is a daily ritual, hated by any and all burn patients. Simply put, it hurts- a LOT. Dressings stick to open burns, and when they're pulled off... well, you can imagine. Tears for most folks, screaming, cursing and thrashing for a few. I go through every dressing change with her, helping her to relax and concentrate on other things. We get a few tears and some grinding teeth, but that's it. This takes about three hours each time. It's not pretty, and it's not easy to watch, but I can take it as long as she can.

At least one more burn surgery is needed, to cover a few small areas. Maxillofacial surgery also still waits, to repair her broken face... one long, or two shorter procedures, along with lots of plastic and scrap metal. Several plastic surgeries are likely, some in the near future, others over a period of years. At the end of all this, a period spent in a rehabilitation center- in Columbus this time. Then, home to live with us until she can get out on her own again.

Thank you to everyone for the support and help you've given. Nikki is starting to look at her cards (with our help) and she's really enjoying them. She's amazed at the number she's gotten, and the locations they've come from. Your good wishes perk up all of us, and we gratefully appreciate all of you.