Thursday, December 31, 2009

So sweeeeeeeeet!

Mary is blessing me today. She did so well with her NON sedation (just IV pain meds, no sedative at all), then we pulled out her NG tube because it was clogging so badly last night. Now she is eating like almost normal eating! She's had almost 2 pieces of sausage, some tator tots and some orange sections! With chocolate mik and ketchup. Her grafts are doing great. The surgeon resident was so pleased with what I had been doing on her face and thinks I'm doing fine and her chest is mostly ready just for this special cream-no more special film dressings. Most of all she's just back to talking, playing, smiling etc....

Wednesday, December 30, 2009


Today has been the first day of multiple visits here. Hollie came as well as my parents, and we finally let Robert in to see her today. He was concerned about her NG tube but otherwise was fine with her. They played catch-she would drop a ball and he'd pick it up. Unfortunately once he pushed it into her chest and she cried a minute but otherwise it was a nice sibling interaction. They also took a ride together in the wagon went well and shared some nuggets and soda that my co-worked Andrea brought. I am in awe over the outpourings of generosity, prayers, cash/gift cards, offers of , stickers and letters from friends, co-workers, family and even people we don't know! May God bless each of you!

Mary ate some today for breakfast-some sausage and all her juice. She really didn't eat lunch though. So we're going to work on moving her feedings to evenings/nights and see if her appetite returns during the day. They are still trying to get 1200 calories a day into her. She'll get 2/3 of that by tube and then hopefully the remainder she'll eat on her own. The occupational therapy/burn nurse was in today during her sedation and said that she will probably need a compression shirt for the next year to help with scaring. She also taught us some exercises to keep her arms loose and her wrist and what to look for that would indicate an issue.

I asked to see the plastic surgery person today (and the dietitian!) and saw a resident I had not seen before. He was very non-committal about how long she would need to be here-he thinks probably through the weekend at least. It really depends on how the dressing changes go. So we are taking it one day at a time. I'm glad to see the progress-especially in her laughing and generally acting more like herself. She wanted Wesley to tickle her feet today and laughed and laughed and then she and Hollie were playing peek-a-boo through the door and then she and Robert playing drop the ball :) It made me so happy! She's also had fun at least playing with her food-instead of being so adverse to the thought of it.

Her pain seems to be a little worse today. They had reduced the amount yesterday from 2 mg to 1 mg but it doesn't seem to hold her quite as well. I think I'll ask the nurse to do the motrin around the clock and see if that helps if not I guess we'll need to try 1.5 mg or something. I imagine that as she is moving more the skin is stretching some and hurts more. At the same time with the decrease in medication she has been more awake which has been nice!

Tuesday, December 29, 2009

Upward swing

I feel better every day. Today I actually blow dried my hair and put in my lost but now found contacts! And Mary did great during her sedation and we're seeing lots of healthy granulating tissue on her forehead and neck. I did get the OK from the surgeon to soak and work on her face as it creates more gunk-I can soak it and get rid of it. I've already been working out the scabs in her hair and she's doing fine with that.So it looks like we're getting closer to being able to take her home and have me do them at home. We had been looking at one issue but the surgeon was very reassuring and everything looks great. We no longer have to keep her still/keep her from rolling around. They have all taken root and are doing great. In fact they are encouraging us to let her move as much as possible to keep her from having contractures (tightening) from the healing burns on her shoulders. Physical therapy has looked at her yesterday and today while she was under sedation and everything looks good there.

Monday, December 28, 2009

Skin Grafts look awesome!

Well we had the great reveal and the skin grafts look awesome. I am so relieved. Actually that is an understatement. Her forehead still has some healing to do-it still gets gunky before she has her daily scrubbing but the rest of her looks really good. I was expecting the rest of her to look like her face-except with 5 days of gunk built up but with the new skin there it looks fabulous! There is one area that I'd like to ask the surgeon about when I see him (hopefully tonight or tomorrow) but otherwise we are so pleased. We did get moved to a private room last night after asking the nurse when the baby next door wouldn't stop crying and it is fabulous in here! So nice to be just us. Wesley is off to fix a work issue so it's just us girlies hanging out. And Mary is sleeping in her crib. Aah. I should prob take a nap too!

Sunday, December 27, 2009

Move out!

So moving out is not all it's cracked up to be. We're now
a) squished into a tiny space
b) sharing a room with a fussy infant who had open heart surgery
c) downgraded to a recliner. There's not even room for a rocking chair in here

sigh. If we're here for ANOTHER 7-10 days I am going to go crazy. The baby should be discharged tomorrow but who knows what we'll get next

On the plus side Mary has had a pretty good day, she's been more alert and ate about 1/2 a popsicle. Her NG tube is still in. Tomorrow is the big reveal. I'm nervous and hoping for good news from the surgeon

Another day here

Mary had her sedation first thing again today. It looks like we are on for 10 am tomorrow with the sedation team so we might be moving out today if they have a room. I sent a ton of stuff home with Wesley yesterday-after seeing how small the floor rooms are I knew we had WAY too much stuff. Mary is still ultra fussy. We did get her pain meds increased today so hopefully that will help. As she is more alert and feels better I think she is more cognizant of how bad she feels. Her IV came out of her foot yesterday so I tried to get her to stand up-and she was so shaky she could hardly stand. I think it really hit me then how long this is going to take to get her back to normal. I definitely think that getting full feedings through her NG tube is helping a lot-she is perkier and awake more now that she has enough calories. She's getting about 1200 calories/day which is great. But she has totally lost the desire to eat/drink by mouth. In reality she is back to newborn status. We had a great night last night-a 3.5 hour stretch which is the longest stretch I've slept in a week. Which is really sad! She has gone back to wanting to be held, it was really sad yesterday when she didn't even want me to hold her. I think she was just so miserable.

The visits yesterday went OK. I hadn't slept well at all the night before-I think we were up every 2 hours at least and she was fussy and I was just out of it. I've spent so much time just sitting with Mary in the last week, mostly here just by myself, although Wesley has been here a fair amount. It was so strange to see people and to be with Robert and out of the hospital and not fully centered on Mary and what she needs. We both took a nap afterwards and that helped a lot!

The resident said today that we might be doing this for another week/10 days. I guess we'll see what the plastic surgeon says tomorrow. I'm definitely staying for it tomorrow! The last 2 days I've left for the procedure since it's my only chance to eat breakfast.

Saturday, December 26, 2009

Slow Progress

Mary is making progress, slowly but surely. She is more awake every day, her face and other burns appear to be healing a little more every day, she is talking more and interacting more. But she still isn't eating well at all. So we made the decision to put the NG (feeding tube) back in again. So far it has stayed in (which is a first-the other 2 lasted an hour each!). She's getting pretty high powered feedings -1.5 calories per ml (so like 7.5 calories per tsp!) at 1.5 oz an hour (45 ml/hr). In addition they are still providing regular food for her but I no longer am force feeding her which is a relief. Since I wasn't forcing her she actually fed herself 1/2 a pudding last night! Instead of cramming food in her we play with her new toys, read books, color, snuggle and watch cartoons. Except (shh) I change the channel when she falls asleep.

The nurses here have been wonderful. Each and every one. The one we had the last 2 nights took Mary out on a field trip last night-to see a bunny and fish tanks, a bigger tree (and she got to pick another present out from under it!) then painted her nails and put a bow on the NG tube holder that we invented that looks like a headband over her head. And her dog-dog got a Christmas bow. It was a blessed day. And Santa came in the morning with the news crew so she was on TV and got 2 more presents. So far she's gotten 5 just from santa/UVA yesterday-she also got like 7 from UVA a couple days ago-a plastic garbage bag full of really nice stuff-a lot of it from Shinanagans. So yeah, she's racking in the presents! We're still in the PICU although not PICU status-she would have to come back every day for the sedation during the holidays/weekend so it was easier for them to just keep her here then move her back and forth. I've really gotten to know all the nurses her so I'm just as happy to stay here too. Plus there's a couch here and just a recliner in the regular floor so that's a plus too!

Today family is coming for a visit and I think I'm going to get out of here for a little bit. I've not been away from her for a week except for 10-15 min to eat/shower (except when she was in OR) and I think it's time to spend some time with Robert and to let the grandparents and daddy spend some time with her! I'm letting her rest now hoping that she'll be bright eyed and cute when they come! She didn't sleep super great last night-her arms are in splints when I'm not holding her to keep her from pulling out her NG tube and every time she woke up she was all mad about it. Poor pumpkin. Well, she's staring to cry so I'll go. Thanks to everyone for you love and prayers. Please continue to pray for the adhesion of the grafts, no infection and for her to want to eat. The doctors are a little worried about her continued fevers-102ish last night even with tylenol every 4 hours but so far her cultures are negative and she doesn't appear to have pneumonia based on the x ray they did yesterday (to make sure the NG tube was in the right place).

Thursday, December 24, 2009

Christmas Eve

I can't believe it's almost Christmas. Well I guess it isn't for us-we're postponing for a healthier time. Wes and I have talked and talked about it and I think with the ages of our kids it is better for us to all be home and have the big Christmas feeling of family and of course presents! Wesley still won't tell me what he got for me for Christmas-even during Mary's surgery! That guy!

Yesterday she was scheduled for surgery at 2:15 and then the called at 9:45 and said she was going *now*. Of course I had sent Wesley home for the night to get some laundry done and pick up more clothes (we originally thought she had mostly 2nd deg stuff and would be home for Christmas. ha.) Anyways she made it through, needing 4 areas of grafts-both shoulders, chest, lt wrist. After surgery when they took out the breathing tube it was full of gunk and she was needing oxygen after surgery so they sent her back to PICU. We'll hopefully move (back) out today. We had moved to the floor about midnight the night before :)

Mary had a good night last night. She slept the best she has slept since the accident and her temperature didn't start going up until this morning and wasn't as high as it has been. The doctors are saying that it is still looking like burn fever not infection although they did do a blood culture and a urine culture yesterday just to check (as well as a chest x ray). Her white blood cell count is way better than it was and that too is a good sign. Her oxygen level was good through the night and she is coughing more-and you can tell her throat hurts from the ventilator tube she had yesterday during surgery-she grimaces when she coughs. Poor girl. We're still keeping her loaded up on medicines-tylenol around the clock, hydrocodeine and morphine. Little druggie! It's been a fine line between keeping her comfortable and keeping her awake enough to cough, breathe well and eat but I think we're doing pretty well with it. At night I opt to just keep her comfortable and sleeping so we do more morphine then. During the day we do morphine as needed and the hydrocodeine.

Just found out that her face debridement is scheduled for 11 today and then we'll move out after that if there is a bed. Regardless I'm hoping for "floor orders" which will get rid of most of the wires. She's hard to hold between the bandages and all those cords!

Well Merry Christmas all!

Tuesday, December 22, 2009

Mary Update

We're having a quiet day here. She is officially a "floor" patient (so not really PICU status) now so we have fewer alarms and stuff going on. She is also needing less morphine so she's awake more although still comfortable with hydrocodone and tylenol (by mouth now!) and the morphine if she needs it. She isn't eating and drinking like they want but so much better every day. We still have to push her to drink, she's eating more though: today she ate all her applesauce and some scrambled eggs! Considering her first meal since snack on Sat was last night and all she ate then was a bite or 3 of pudding that's pretty good! She is still getting daily wound care with their magic solution (baby shampoo!) and then dressings of more sophisticated stuff. We should know this afternoon if they are thinking she'll need skin grafting soon. I really hope not. Oh how I hope not!
If she does end up needing a graft she'll be here "longer". No one has even attempted to tell us how long we'll be here, the best they'll say is we'll be here for Christmas. She wants to be held a lot so Wesley and I are taking turns holding her in the recliner. She's awake for a while and then drifts back off. Thankfully she slept pretty well in the crib last night, pretty much only needing the oral meds and one dose of morphine. The previous night she had needed morphine every 1.5 hours! She runs fevers on and off which they are still thinking is her normal body response to the burns. The tylenol is scheduled to keep on top of that. She's talking a little, last night I was feeding her some juice and about 1/2 way through she pushed it out of her mouth. I said "are you all done" and she looked at me and said "esh" just like she always does! I could have cried, it was so sweet to hear that!

Monday, December 21, 2009


How fast life can change. In the blink of an eye we went from the perfect snow day to the ED and now (about 24 hours later) to the PICU. I can still see it in slow motion, I was dropping a bullion cube into boiling water to make broth to add to the soup I was making and she came rushing in and grabbed it. I reached for it but I was too late. Splash, scream, running to the bathroom to put her under cold water, watching her skin start to peel off. I knew we were in trouble then... Til we got her to the ED (which wasn't long thanks to Roger having snow blown earlier) she was shaking and shocky. They got an IV in and morphine in so fast and had her up to the floor where we started the long difficult process of getting the dead skin off and everything dressed.

And so here we are, the first people moved out of RMH after the snowstorm, in the PICU. Thankfully they broke protocol and allowed me to ride with her, and her transporters were truly fabulous. The roads were so bumpy and that really didn't feel good to her at all so they kept her medicated and held on to her and talked to her the whole time. And they talked with me and cheered me up a little. From where I was sitting all I could see was her fuzzy head and she looked so normal from that view that it was a relief for a while to not be staring at her peeling face and body. Because truly she is a mess. She looks a little better this morning after her debridement last night and her new dressing works so much better. They used net wrapping and made her a long sleeve shirt, sewing the arms on using mask ties. I offered my embroidery floss (I'm still working on Mary's stocking) but the ties are working well. With this set up I can hold her if she wants (which she did briefly after the procedure but you could tell she was tired and uncomfortable so the nurse gave her some more morphine and I tucked her into her crib). I did hold her for about 45 min before the procedure and it was perfect. She seemed so happy snuggled up with me and well, I was so happy too.

Her biggest hurdles now:
eating or another NG tube. They put one down while she was asleep but we can't get it taped right since so much of her face is peeled. All of her face should heal great they say BTW. It was making her miserable and we weren't sure that it had stayed in position after the x ray so they decided to take it out. So today she really needs to eat. I tried to get her to drink pediasure last night but she wouldn't do it. Her lips are a little sore but not too bad and her mouth is OK

4ish areas of 3rd degree burns that will either heal on their own or have to have grafting. They will probably have a better idea which way it will go in 3-4 days but wouldn't do any grafting for a week if things were looking like they weren't healing.

Sunday, December 13, 2009

The news from lake wobegon

It's been a not so quiet week here. The kids are all ramped up for Christmas. I didn't have to work much but Mary was sick part of the week and so that put a damper on us. But the house is decorated, cookies made and exchanged, 2 holiday parties (and the only2 this year I think unless Wesley's work does one) gone to-complete with gift exchanges. Whew! Suffice to say that the kids are both excited-although Robert the most so-for Christmas. And I frankly CAN'T WAIT. More for their sake than mine. Although I'm excited too!

We've been trying to do Christmas things each day and talk about the Christmas story. We just started the "what God wants for Christmas" set that Wes' aunt and uncle got us for Robert's first Christmas where you open a box each time you do it (there are 7) and each time its another figurine for the Christmas story.

Speaking of the creche we have the "new" Zairian creche up this year (the one we bought at the Sunnyside sale last year!) since it doesn't tip over as easily-and it is surrounded by every barn animal I can get Robert to part with. Every now and then he asks for a few more so we swap some out. lol. Not that he really ever played with the animals BEFORE I put them up!

And the other indication that we have small children is that our maticulously decorated (sic) gingerbread house is missing a large number of candies due to a little almost 4 year old who can push the chair over and snack. hmm.

And finally for the cost of shipping we have 2 adorable kids fully packaged and ready to mail to anyone who needs some chaos. Cookies included!

Saturday, December 05, 2009

Tuesday, December 01, 2009


I wish I had pulled the pics off the camera-but we went to the gym instead. But the kids and I had a great time today making cookies (martha stewart's sugar cookie recipe is GOOD) and decorating and eating them. I'd like to try to focus on the season this year. The last 2 years I've barely just survived days and Christmas has come and gone in a flurry of shopping, wrapping and wrangling kids away from the tree. Now I feel like we're thriving. I immagine though that by the end of the week (I'm working 36 hours this week) I'll be just surviving!

Wesley decorated outside this past weekend so that is done, now we just need to get the tree up-but I think we're going to wait until next weekend. Mary is already wrecking havoc on the candles-I think we'll hold off a little!

I just can't believe how they are growing up each day. Every day Mary talks more, is more nurturing (if I can't find her in kids klub I just find the smallest baby-she's there taking care of it). It's so bad that the person in kids klub today asked me if we were having another baby "for Mary". um. Not planning on it. I feel bad because I would have loved a baby brother or sister-but at age 8+ not at 2-3. I do think I will do my best to give her baby oportunities as she grows-let her be a mother's helper, babysit with her, do nursery etc. We had to take 2 baby dolls with us to the gym today (we left them in the car seat though). I love seeing her with the babies. Yesterday I went to get them up and she was sitting in her crib feeding a baby. I asked her if she was ready to get up and she said "no I feeding baby". She finished feeding the baby and then was ready to get up! lol. I would love to buy her the entire bitty baby set from American girl. I just looked at them again. But where to start and end?

Robert played playdough by himself (using the playdough scissors!) for probably 30 min today-it was crazy. Mary was helping with the cookies (Robert was interested at the begining and then decided that playdough was more fun) she loved rolling and cutting out! It was amazing to watch both of them. They are getting so big. Mary is still super excited about the pop up nativity book. She loves finding baby Jesus. She'll bring it to me "baby de-sus, baby de-sus, read baby de-sus". I'm so glad that they are interested in the real reason. I want to create magical Christmases full of wonder but I don't want to loose the real reason for the season. So it's cool.

10 on Tuesday

This week's topic is
10 things you want but wouldn't buy for yourself


Is this really a "santa baby" list? And no, these are not hints!

1. Really nice pots and pans (cephalon maybe?)
2. Really nice and expensive knives (chicago cutlery or similar)
3. Shark steam mop
4. Roomba
5. Le cruset baking dishes
6. Kitchen aid 6 qt professional mixer
(is it just me or is it pathetic that these are all house/kitchen items?)
7. Shopping spree for clothes
8. Compost bin
9. The complete american girl set for Kirstin
10. Gas stove with a grill section