Nora was skiing this afternoon and had a bad accident. She is in a hospital in Vermont right now. She is in a coma but is in very good hands here at Fletcher Allen Hospital. If you would like to send her a card or pictures, please do that. The address is Fletcher Allen, McClure 3, 111 Colchester Ave, Burlington VT 05401. Please pray for Nora. We will keep this site updated as best we can.
*** For more of Nora's story and progress, go to the "JOURNAL SECTION" of this website.
Day Two- Nora is fighting. She really got banged up pretty bad. If you don't want the details, you might want to stop reading. For those who want to know what's going on, I'll tell you. Right now she is getting a procedure done to look into the blood vessels in her brain. They don't know clearly what is going on with the bloodflow from the MRI. The doctors here are super. I really feel like she is in the best care. She is on a ventilator and is heavily sedated. They tell us they think she knows we came in the room this morning because her blood pressure went up a little. What else? They have a monitor in her brain to keep an eye on pressure, etc. She has yucky lungs, I guess from vomiting when unconscious. They are draining that. She broke her left humerus up high by her shoulder. She broke her right collar bone. There is a fracture at the base of her skull and they are concerned about her carotid artery. That is what this test they are doing will help tell. Tim and I feel your support all the way up here. If you could send pictures of Nora that would be wonderful. I want the people here to see who she really is. Please try to let ppl know not to send balloons or gifts. We know you want to, but the room just isn't big enough, and frankly, it's more important to get pictures and well wishes. We love you all and I will try to keep you posted as we go.-Candy
2:30pm Monday (day two)- I can't tell you all how much it means to Tim and me to read your well wishes. We are reading them and we thank you all from the bottom of our hearts. She needs your prayers more than ever.
6:45pm Monday (day two)- I understand there is a vigil at KWS tonight. Thank you. So this is what we know. Might be more of what you've read above, but at any rate... here come details about her condition. She is fairly stable in that her blood pressure and brain pressure are holding steady. Getting through tonight will be great. This is up to Norsie to just hunker down and get through until the swelling gets better. So it sounds as if the swelling is still coming. But she's a fighter. I've been playing John Mayer and Lana Del Rey pandora for her. And Lorde. A little of Lorde goes a long way, as far as I'm concerned, but Nora plays her all the time, so... Tim and I camp out in the waiting room and in her room- depending on how many people are in with her. I can't believe how many people are caring for Nora. They are amazing. Ok, well that's it for now. She is scheduled for a CT scan tomorrow morning. No more tests tonight. Love to you all.-Candy
9:50pmMonday still... It's amazing what a body can do if it needs to. I'm talking about mine and not Nora's, actually. have been awake since yesterday. slept an hour this morning. Had a so-so bowl of frosted mini wheats and pineapple juice. and still going. tim and I are hanging in the waiting room. Snooky (my mom) will arrive here probably in a half hour. We'll visit Nora quick, then it's off to bed for my first real sleep. Hopefully. No news on the Nora front. and no news is good news, folks. Beck will be coming back up here tomorrow with Tim's parents (Mom Mom and Pop Pop). Tom (Tim's brother) is here doing anything we need. As we speak, he is being chauffere (sp) for Snook. I'm feeling good right now. I've been reading all of your messages. You all are keeping us going. To those of you who want to be here, know that her room is small and she needs rest. We talk about all of you, well some of you! Only in the best of ways, of course. We've told Nora about the vigil at her school. Thanks for the pictures. We have a slideshow of Nora and some of you that is going in her room. This is for all of her caregivers to see the real deal. She is beautiful and she is receiving your prayers. I know she is. They say that her blood pressure changes slightly when Tim and I walk into the room and hold her hand. She knows we are with her and we tell her you all are too. More to come... goodnite for now.-Candy Oh, by the way... Nora was wearing a helmet. Yes, thank god, she was wearing a helmet.
3:50am Tuesday Good News Report!Well, I decided to sleep at the hospital tonight just to be close. I may have gotten a couple of winks. Just woke up and went in to check in on Nora. She has been cleared of her Thoracic, Lumbar and Sacral precautions and now only has cervical precautions. What that means is that she can be in a more of a sitting position. Instead on lying flat and not bent at all (her head has always been elevated and feet below, if you can picture that), she is more in an L shape sitting up. Her face is less swollen. She doesn't have cervical spine fracture, per se, but ligaments are banged up. So the cervical brace thing will have to stay on. Next, where she had been requiring 100% oxygen, she now only requires 75% (and is saturating it well. The brain is absorbing it well- she has good numbers on that). I was in there for a few minutes talking to her and kissing her arm, and she spontaneously moved her right leg a couple of times! Had apparently done this before too. Okay, I'm going back to sleep now. -Candy
11:00am TuesdayHi guys, It's Tim. I'll leave the medical updates to Candy as she is better at remembering what the doctors actually say. I am still kind of in a daze. I just wanted to thank all of you for your words of encouragement. You don't know how much these posts and well wishes mean to us. We feel your love. I have been reading them to Nora as I hold her hand. Right now they have put her in a deeper coma so that her brain can heal. The swelling in her head these next few days will be at the most extreme so they want her to be as calm as possible. Keep sending your love up to her and spreading the word of this site. It's a great way for us to communicate to you all. We love you all so much. She is a fighter.
Candy here- well, the medicine they gave her about an hour ago to put her in a deep sleep is doing its job. The number that we want for the brain pressure is under 20. Nora went from 20 to 10 in about fifteen minutes. The doctors are very happy about this. Don't know if I mentioned that her right lung had been in not so great shape... but much improvement with her lung today and they are very happy about. To our dear Kimberton friends, it sounds like the vigil you had for her last night was simply beautiful. We have heard about it and have seen beautiful pictures. I have read the notes you all wrote to her. You are making a difference. All of you. We know what a helpless feeling it is to be in Pennsylvania with Nora up here in Vermont, but honestly with this website we feel so close to you all. Thank you.
7pm Tuesday (March 25)Hi everybody. Nora is in a good holding pattern. I just spoke with Richard, the neurologist that is in charge of all of the residents here in the ICU, for about 40minutes. Not because things are horrible but because he spent that much time with me and made sure that I understood everything that I wanted to know. You all can sleep well tonight, and I think that maybe, just maybe I will be able to also. For the very short term, he is very pleased with what he is seeing. Earlier today there was a big decision to make. In order to keep the pressure in her brain to optimal levels, should they take off a portion of her skull (they aren't doing that because the pressure is global and not in one concentrated area; also that would mainly help make room for swelling, but Nora's issue seems to be more of a pressure problem). I realize that probably makes no sense. So instead of that option, they decided to give her the drug I think I told you about earlier that makes it so that she is in a deep coma. Well, Richard is happy with decision 4 hours later. So a short term celebration is in order. Everyone that works with Nora is looking at her beautiful pictures and listening to her sing "Make You Feel My Love." I'm not sure if Nora ever posted her singing this. I want to find a way to make it available to all of you, and it will melt your heart. I've said this earlier, but you all are supporting us tremendously. I have to say that as the number grows at the top of this page, I am growing more self conscious about my writing. Every mom loves talking about their children, but I never dreamed that I'd be sharing this content and to such a large, supportive group. I thank you. As for Fletcher Allen, I hate to tell you all in Philly, but I don't want to leave this place. They are top notch. Haven't run into one grumpy human here. Ok, so before I start sharing really stupid details like Tim is craving pudding but can't open the container, I will sign off for now. So many of you have told me you check in frequently for updates, and so I will try to give you something to read. But Richard says we are hoping for a REALLY boring next 2 or 3 days. Love to you all. -CandyOh, please keep posting pictures!!!
8:30pm TuesdayNora singing "Make You Feel My Love"https://www.youtube.com/watch?v=P29yZ8CH6EI
7:25am Wednesday Good Morning, My sweet Nora- You've made it through another day. I woke up this morning with tears streaming down my face, but they are tears of joy, honey. I was lying in bed listening to Daddy and Beck breathing. What a simple sound that we never take the time to treasure. Then I thought of your nurse, Alison, who is right now listening to your sweet breath and who is watching your every brain wave. I was thinking about how you are like a hibernating bear right now. Resting your brain and body and finding the strength and will to come back to us. Then I read a message from one of Daddy's new Disney friends. She called you Sleeping Beauty. She is so right. Your are our Sleeping Beauty, darling. Sleep. And we are all like the seven dwarves holding a vigil for you until you wake. I called Alison last night around 3am to check on you. She told me that your ICP (intra cranial pressure) was holding at 9. When Beck and I left the hospital last night it had crawled back up to 18 and all of those nice silent brain waves were squiggly again and my heart sank. But you're back down to 9 and sleeping perfectly again. I hope you don't mind, but I taped your bucket list to the wall in your room so all of your doctors and nurses can read it. Daddy caught a nurse crying when she did. You are inspiring people even in your sleep. Remember Sunday morning when you told me you had a weird thought... what if just once, just one time in the whole world every single person in the world was awake at the same time? And I told you that couldn't be because of the sick people and the tiny babies that need to sleep all the time? I never thought about the sleeping beauties. We all need to sleep. I love you more than you will ever ever know. Love, Mommy
10:40am WednesdayNora shared with me a bucket list that she wrote in the car on the way up here for our vacation. She calls it her "Personality Bucket List"
*be courageous- talk to strangers, learn their story
*roll the dice- be spontaneous
*explore unpopular beliefs*reclaim spare moments
*be a spy- people watch, eavesdrop, learn secrets
*be observant- sample flavors
*wake up early
*look at the moon instead of a screen
*notice details, learn from others
*offer to help
*be yourself in public
*smile at sneers
*follow your weird impulses
*say what others can't/are scared to
*listen to the silence and the unspoken
*be careful what you brag about
*don't take yourself too seriously
*see potential, see good in everything
*have no shame- in the past, in your ideas
*embrace change- tradition isn't a mandate
*set your boundaries
*give extra chances
*let go of bad memories
10:50am Wednesday, March 26 (tomorrow is my niece, Aubrey's bday!!! Happy Bday Aubs!!!)So here's the latest on Nor-Today will be boring, is the expectation. I've learned a lot about brains over the past couple of days. A 16 year old brain is still growing and by the time you're about 18 it has grown to the biggest size that it will get. Did you know that from then on, the size of your brain actually shrinks? Anyway, that means it's kind of tricky for Nora because there is not as much room in there as there would be if she had my head and brain. Anyway, she is getting the sleepy meds again today and maybe tomorrow they will begin to wean it. The meds have something they call like a memory... it takes a few days to wear off. It is a great big balancing act. How long to medicate in this deep coma and when to stop. The trick about being too still for too long is that complications are around every corner (pneumonia or blood clots since she is SO still). So that all will be stuff to worry about. Now, hopefully when she starts "coming out" she will tolerate not being on the meds (pressure levels staying good, etc). What else? There is a monitor that actually shows how much room is in her head. Right now she is pretty much at max capacity. But the pressure level is good. She is requiring 85% oxygen instead of 100% (the other day she had needed only 75% but once they had to lay her flat for a test that made things get tricky). But she is being oxygenated well on 85%. So that's good. So the long and short of it for today is hopefully nothing more to report. But tomorrow and the next day very well may get complicated. Thank you for all of your continued messages. Ellen, your post is the BEST! Tim's parents, my mom, Tim's brother, Beck and I were rolling. I think that one will make Nora's wall. Love you all -Candy4pm Wednesday Boy, the day just drags on. I want to just jump forward. But still no news is good news. Nora is chugging right along just as the doctors said she should. Improvement in the amount of oxygen she is requiring. She is successfully tolerating 60%. This is good. They are taking such good care of her. I don't think it would matter if the president himself were to call and put in a word for her- they are treating her like a VIP. And us as well. I don't think I've mentioned before that we are staying at the Ronald McDonald house. Oh my god, I will never look at a McD's the same ever again. We are staying there for free. The kitchen is stocked with drinks and snacks. They make a hot, nice dinner every night. We have a beautiful bedroom and a bathroom down the hall. The bed is the most comfortable bed I've ever slept in (and we all actually were able to sleep last night). This is truly a night mare that we are going through, but we are surrounded by love up here. Beck last night said "it sucks that we're here but it's great that we're here." Meaning the house is wonderful. I've never had a charity that meant anything to me, but The Ronald McDonald house now is our charity. Yesterday was supposed to be spa day for Norsie and me, so I gave her a very unprofessional pedicure today. Her poor little feet are puffy. They have compression pumps, or whatever you call them, around her legs that help prevent blood clots. They reposition her in bed every two hours so that she keeps her beautiful skin staying beautiful. They say it's going to be a very long road. Thank you for being with us on this journey. This website is a tremendous source of strength for Tim and me. We are hanging on your every word. God bless you all. -Candy
9:30pm WednesdayNorsie- we all just went out to dinner at the Outback Steakhouse (me, daddy, Beck, Uncle Tom, Mom Mom and Pop Pop). It was really the first "outing" for daddy and me. Everyone told us we have to leave and try to take care of ourselves. Well, I felt worse being there than when I am here in the hospital with you. My gut just ached. So no more restaurants for me. I just went in to see you with Beck. Nor, he loves you so much. You mean the world to him. But you already know that, I know you do. Norsie, you look so pretty tonight. I think you might even agree with me. They put you on a new med to decrease some of the swelling. Your poor little arms and legs, and knees and feet and hands were really getting quite swollen. And they say that means only one thing for your brain... but you are less swollen now. Now, let's talk about your hair for a minute. Looking curly and a crazy orange/dark color mostly. I think you would like that too. It is kind of all pushed up to the top of the bed, but it almost looks like you planned it. I like to think you really have a mirror hidden underneath the sheets and did a quick check before we walked in. My sweet Nora- you are a beauty on the inside and out. I've always told you that, and I couldn't mean it more than right now. Your O2 is staying strong. Your ICPs are a bit up, but they say that's just because they were doing some trach care. You're tolerating the feeding tube calories. All in all you are doing it! I think about all of the challenges you've had in your 16 years so far. You've had many hard times, more than anyone should have to deal with. You're so wise to have learned that you come out stronger for having pulled through those times. Remember getting the concussion at camp? Of course you do. God, that was water skiing I'm just realizing. And dealing with mean girl stuff. And having the worst year at camp that year and deciding to go back the next year anyway? That was all you. And you got there and felt nervous and decided you needed to just walk in the cabin and say, "Hi! I'm Nora Neely!" even though you were scared out of your mind? And then having hi's and low's at camp that very CT summer and making some of the most best friends ever? And then receiving the most highly respected character award at the end of camp? That was all your doing. You were working on that bucket list even when you didn't even know it. You are my hero, and I need you to keep being my hero for a little while longer. Like get through tonight. And then the next couple of days. And then the next. Honey, I can't wait to share this website with you so you can see how many people's lives you are touching right now. Do you realize there are people praying in Iran, Italy, Germany, Peru, Australia, California, Wyoming, from Vermont to Florida and don't forget cousin Kev in Arkansas. People we know and love are telling people they know and love to pray for you. Honey, you are a little miracle. Keep on fighting and come back to us. Good night, sleep tight, and don't let the bed bugs bite. xxx see you in a few hours... Love, Mommy
March 27th!!! Day 5- Good Morning. Beck is in a car back to Philly with Uncle Tom, Mom Mom and Pop Pop, and Tim and I have arrived to see our sweet baby girl here in room 307. She had a fairly uneventful night. The Pentobarb they have given her to keep her so so still is doing its job, but her pressure level in her brain creeps up to the dangerous 20 number, and so they started giving her a higher concentrate of salty saline in order to try to suck the fluid out of her brain more effectively. This is working, but it is quite a game to get it to work and stay. Some things to put on your radar... The Pentobarb will probably be given to her for 4 or 5 days. But ppl seem to get pneumonia at about day 5. I am in the room with her right now. I need to go. Just can't think. I do want to tell you that I woke up again today humbled by all the love that is being sent to us. Your messages are our fuel right now. As glued to these updates as it sounds you all are, Tim and I are hanging on your every word. I feel like today will be harder because Beck is gone, goofy Uncle Tom isn't making us laugh. Tim and I are strong together, but you are keeping all of our broken pieces glued together right now so we don't completely fall apart. God bless you all and God bless our little Bean. -Candy
12pm March 27 (Thursday)Well, they predicted a rocky road, and I think we are at the beginning of that. Nora seems to developing pneumonia, which they said would probably happen. I was just in the room with her, and she is resting comfortably. Her little eyelids are closed, her face is pretty, and her ICP was down to 7. Respiratory came in to take a culture, I guess you would call it, so that they can make a mix of just precisely the exact kind of antibiotic and get her going on that. The room is dark, quiet and the door is shut these days. Don't really want any stimulation in the room. Keep the brain calm. So Tim and I are out here in the waiting room/ lounge. We have been meeting other families who are going through troubled times of their own. Want to picture Tim right now? He's in a lazy boy chair reading a golf digest magazine. Has my mom's reading glasses on. They are a tiny bit too small for his face. It's good to see him putting his mind on something else, if even for just a second. It's been a really hard morning for us. Lots of crying. But right now I am sitting here with a smile on my face because I've got Tim by my side. We have been holding each other up. Somehow when he gets low I get stronger and when I break down he's a rock. He's a funny rock, and I'm so glad I married him. Ellen, I look forward to reading your posts, as I'm sure many other people are beginning to as well. At any rate, we are out here chugging along... waiting for our food we get to order to Nora's room. Keep the posts coming, and thank you for your personal emails and texts. Don't stop. -Candy
3:30p Thursday March 27Dear Nora, I have spent a lot of time away from you. They want it to be just so, so quiet and still. MJ is your nurse right now. She reminds me so much of Diane, my student teaching rock star of a supervisor. I know that you love her and are so glad she is taking care of you. She doesn't sit still. Always monitoring something, tweaking something else. For such a motionless girl, you sure are a handful right now. I love MJ because she is so calm and sure of what she is doing. She has been a nurse here for something like 38 years. Snooky said she must have been born here in the hospital bc she is so young. Well, the last time I was with you this is what was going on. You are having a harder time and need a bit more oxygen concentration. Your pressure seemed ok at the time and MJ said it was holding a little bit longer than it had been earlier in the day. A doctor walked in and they were discussing why they thought your heart rate was elevated. MJ thinks it might be because your body want to have a fever. As we were leaving the room we heard MJ telling the doctor she believes that you are aware of things on some level. Huh. I'm going to have to watch what I say around you. But anyway, they don't want us touching you or really talking too much bc they still want you calm. I talked to Ginny Maxson! I know that will make you happy to hear. I discovered how to get on your Facebook and sooooo many of your friends from camp are telling you the nicest stories about you and them. Daddy and I are so proud of you. xxx Mommy3:45p Thursdayantibiotics are started, although they won't know which really good exact kind to give her for a few days. Need the culture to grow or something. Ok, now for really encouraging news. Nora's right pupil has been fixed and dilated. While the MRI was not too successful, l and therefore, they really don't know what has happened in your brain and brainstem... the right eye being dilated has been a bad sign of some kind of damage to her optic nerve I think. They did tell us that they thought from the MRI there was no real damage in the brainstem, it's just swollen in there. Now, the good news. Your right pupil is LESS DILATED!!! It's gotten smaller. It's not reacting to light, but it is smaller. Now I'm no doctor, but this suggests to me that something is getting better and we are talking temporary and not permanent optic nerve damage. Let's just hold onto that for a while. There are so many things wrong with her right now, but it is so good to see one thing getting better. Below is going to be my recalling the day of the accident...I haven't gone back to read what I've written here. I don't know what has been shared about the accident itself, so I thought I would share a bit of our day on Sunday. Doing this writing really helps me. It's kind of weird. I really feel as if I'm writing it for myself- like in a diary. But I also have been told by so many of you that it is helping you to be able to follow along. Anyway, Sunday. Our first full day up here in Lake Placid. We started the day by going to the Olympic Training facility where you can do a bobsled run. That was a lot of fun. Nora said that Tim was yelling, "GO FOR THE GOLD, BOYS!" the entire ride down. Then we went to White Face Mountain for the skiing. Had the worst lunch there. Nora got chicken nuggets and french fries- ate no nuggets. We called them 'fuggits' (fake nuggets). I talked to Nora about being so careful on the mountain. I reminded her about my good friend Carolyn's skiing accident and how she really had a bad trauma and broke both legs and it was horrible. I told her to take it easy. I told her a lesson would be a good idea, but she said, "Mom, I can ski fine. Remember when I was skiing with Lara at Bear Creek a few years ago?" So then we went to the store and bought goggles for everyone, neck warmer things, and then went to get the skis. It was about 1:28pm when Nora was all fitted in her helmut and ski boots. Had the boot warmer things tucked in. Nora, Beck and Rory (our Australian son/exchange student) went out to ski and Tim and I got settled up in the lodge. We could see them through the window and watched them head up the mountain. I got on the phone and began to book the spa day that Norsie and I were going to have on Tuesday. Tim spots the boys. No Nora. They came up to the lodge and we started to text her. "Boys r inside. Lost u. U ok?" We saw the snow mobile and I knew it was her. We got her in the ambulance and were at the closest hospital 20 minutes later. She was conscious in the ambulance and in pain and shock. They kept telling me that was a very good thing. I know she was saying' MOM. and I know she was trying to tell the EMT folks something. We got to that first hospital. (Tim, Beck and Rory were driven by the nicest guy named Dan who was from White Face). They tried to stabilize her, and it might have taken 1 1/2 hours before she was stable enough to be air lifted to Fletcher Allen Health Care. We walked up to the chopper with her. Watched them get her into the helicopter. A nurse gave me the things that were in her coat pocket- iPhone & her special, perfectly round, flat rock. It was 3 hours before we could get to Fletcher Allen. Dan took us to our hotel and we shoved things in bags and checked out. We had to go back to White Face to get our car (I had the car keys with me all along- leaving Tim stranded and needing the ride to the hospital). We started off for the hospital- had to take a ferry. Nightmare ride. Got to the hospital by maybe 7:00. There's more, but that's enough. She is in very good hands here. Signing off now so I can go see her... -Candy
11:26pm Thursday nightIt was a pretty encouraging night. Then we went in to say good night to Nor- and there are some tricky things going on with Nora. I just don't have it in me to write about it, but Tim and I are hunkering down in the hospital tonight. I just can't leave her this night. I thank you all for your support. Not feeling quite as strong at the moment, so I'll sign off for the night and express my gratitude for all of you. -Candy
12am- It seems she had an allergic reaction to one of the 3 antibiotics they are giving her. They figured it out quickly and things are better. I'm breathing again. Goodnight.
Friday 9am March 28 Greetings from snowy Burlington. Tim sees the weather as a good sign. We slept here in the lounge outside of the ICU. Woke up without having to be summoned to Nora's room, so that's a great thing. We are showered and back here waiting to be able to see her. Right now anybody who's anybody is hovering over Nora's bed having a pow-wow. It sounds as if the plan for her is to do more of the same. Just keep her quiet and cool. The reaction she had last night is called Red Man's disease or something like that. Reaction to the antibiotic Vanco. Benedryl fixed the problem. Whew! Tim was giving me the business for writing my desperate entry last night. Says I shouldn't freak you all out. I'll try to save the bad reports for after things have been resolved. Ok, got to go for now. Gonna go see our sweetie! -Candy
12:30p FridayShe is back from CT scan. Two hour journey for a 90 second procedure. Have to get her ready to be mobile. So much to consider. I told MJ, her nurse, that Nora has always been very low maintenance. Ha. No word on the test yet. But she did well with her road trip to the test. Levels all stayed stable. So that's great. Nothing else to report. Someone was in there with her doing something up top toward her head. Drawing lines on her forehead in green pencil. Looks like a mini football field. She would like the color of her hair. It's reddish, they say from the iodine, etc they cleaned it with. She has had dark red/brown, but never this shade. A little lighter red. One of the nurses, Lexi, brought in some black and dark green with sparkles nail polish. We will do her up in a few days. It's weird to say, but it's beginning to feel a bit like home around here. We have gotten to know new families and their stories as well as having some people come back to visit us whose family members have moved on to other floors. Matt, a guy whose dad just had bypass surgery always stops in to say hi. When we want to go in to visit Nora, there is a phone that we have to pick up. We wait for them to answer, and they let us know if we can come in. I just figured out there is a hidden camera in that spot so they can spy on the people trying to get in. The lady last night enjoyed the little jig I did for her. It's beginning to be like a ginormous family. And you all are all part of it. Will report back when we know something about her testing. xxx Candy
1:45p Friday Hey there. So... they know now that she DOESN'T need the vanco antibiotic (that's the one she is allergic to)! They had to keep giving her this antibiotic even though she is allergic to it. Ugh. Her face is pink (not cherry red like last night) right now, but they just took her off the drug. So that should all go away! Nora's heart rate is good, ICP pressure is actually holding without needing continual doses of whatever drug to control that. Her brain oxygen saturation is good. I forget how much oxygen she requires these days, but I think it was at about 70%. CTscan report read like a bunch of medical jargon. I think the new news is that there is a tiny decrease in the bleeding in that brain of hers. No new injuries detected otherwise. Um... coming up on a shift change, and we are sadly going to have to say goodbye to MJ until Monday. -CandyCandy
3:40p Friday Woo Hoo!!!! Official word from the neurologist. Her swelling is decreased! The CTscan shows more room in the brain. Less blood and more room. Things are being absorbed. They think she's turned a corner with that HUGE worry. So they are beginning to decrease the pentobarbital (that's the drug to make her hibernate), and if she keeps tolerating it, she might be off it by tomorrow. They've taken her off all but one antibiotic. She hasn't needed to be on any blood pressure control medicine since early this morning. She's been holding the brain pressure at a low level 6 without extra med control. Her pupils are the same size as each other and, while controversial, the right eye may have been reactive to light. Oh my god, what else? Her face is still pink, but who cares. All good signs. And while she is in no way OUT of the woods, this is such a huge change. Go Nora, go!!! Now I know all of this progress is happening because of all of our prayers for her from all over the world. I think we've added South Africa and Iraq to the list of places. Right before the doctor walked into the room to talk to me, I was opening an envelop addressed to Tim and me. It is from Mary Ann Cox, long time friend and colleague of my mother's. She sent me her mother's rosary. Mary Ann asked her mom to watch over Nora from heaven and bring her a miracle. I believe this is exactly what happened. I will not let go of this rosary. Thank you everyone. Love, Candy (and Tim) http://youtu.be/HsdPRW2TxFY
Friday night 9:30p March 28 Dear Nora, Daddy and I felt so good about your news that we actually left the hospital and went into the cute little town of Burlington and had dinner. The weather isn't too cold, and we walked a block from the house to town. You would love this place. I peeked in a couple of storefronts and have decided that when you are better, we are shoe shopping up here. You will love the boots. We went back to the hospital to say goodnight to you, and Naomi is your nurse tonight. She was the nurse on duty the night you had your accident. Well, we hugged and celebrated your huge accomplishment today. In the words of Sherri Shields- you turned the most important corner of your life today. Well, Naomi heard that I wanted to paint your toenails and brought in all kinds of colors. I painted your toes. Some are blue, some are green, and a couple are silver. Naomi is going to do your manicure tonight. Had a good talk with one of your doctors. Same doctor and same time of night as last night's scare, so it was nice to talk to him about the good things tonight! Daddy and I kissed you a million times, got you caught up on the news from friends, etc, and then headed home for the night. I found myself singing a song when we were walking to the car, and I realized that it's the first time I've done that since your fall. It's stuck in my head: "Waiting on the Day," by John Mayer. It made me happy thinking about when you and I drive in the car and sing his songs at the top of our lungs and harmonize and don't stop the car even if we're back in the driveway because we have to finish the song. I can't wait to do that with you again. But I will. I'll wait on that day. And we are waiting, sweetie. I feel good about where you are and who is taking care of you. I was thinking about when you were born and how Snooky came over to watch you one night so that Daddy and I could go out. I think we went to look for a sofa at a furniture store. But all I could think of was needing to be back with you to make sure Snook was doing everything just right (sorry Snook). We didn't stay out very long. Well, now we aren't looking for furniture, and I feel ok about leaving you in the care of Naomi or MJ or Lexi or Alison or Colleen. You get a good night sleep tonight, because I think that in the morning they are going to start weening that hibernation medication. That's going to be hard work for you. Oh, by the way, Rob (doctor) told us that they are starting to think about that left arm of yours and you'll probably get an X-ray soon for that. Oh my goodness, that means they are starting to make their way down the list of your injuries. Not just thinking about your brain anymore!!! Daddy and I love you so much. You have always amazed us by what you do. Now is no different. And one more thing that I want to share with you, Beanie. Tori sent me a few quotes and one just keeps sticking to me. "I do believe we're all connected. I do believe in positive energy. I do believe in the power of prayer. I do believe in putting good out into the world. And I believe in taking care of each other." Good night. Love, Mommy1
1p Saturday, March 29Good morning. Nora had an uneventful night. There are so many things they are monitoring that I am losing track of them, and this is the only place I am keeping track of them, so bear with me. Slowly being weened from this pentobarb drug. Watching how her little body tolerates that. Things will slowly start to wake up- like body functioning things. And then other things might not wake up as easily or may be a bit messed up. Whether that is temporary or permanent... who knows. So for right now the are keeping her cold. They have some kind of arctic thing, I forget what they call it. It's like soft ice packs in the form of tubes that stick all up along her legs and arms. She's so cold! The door is shut and lights are dim. Her pituitary gland is not functioning the way it is supposed to. That regulates how much urine is produced and that has to do with how much sodium and other things are in her. She is "peeing like a race horse" right now. But that is all being closely monitored and it is what it is for now. Her ICP- brain pressure is good. That's the number that's supposed to be under 20. Well, last night it had gotten down to -5. Right now it is 6. When it gets too high (what we've been so worried about all along), that means too much pressure in the brain and no room in the skull. When the number is too low, the doctor was explaining to me that means the ventricles don't have enough pressure and he doesn't want to see them collapse because that is where the cerebrospinal fluid flows. But they seem happy about her number. Nora is requiring less oxygen and is at 60%. So all the numbers are good right now. Her nurse, Sue, says that she is very impressed with how well she is tolerating all of the feeding tube stuff. For someone to be on pentobarb and be tolerating all of that is just great. Nora's lips were pretty chapped this morning. It felt good for me to be able to put my chap stick on her. I can't think of anything else to report right now. I am certain that if Tim and I didn't have this website to go to (which we do every moment we are not in the room with her) we would be feeling very isolated and probably very negative. Thank you for being there for us. Beck has been home for a few days. I miss him. Today I think he will be in the neighborhood running around. That will be so good for him. A little normalcy in this crazy new life. Some of our new friends up here (family members of ICU patients) have moved out of the waiting room and are home or are on other floors of the hospital. Some have stopped by to visit us. New family members are moving in today. We will meet and share stories and support. Well, here's to a good day. Hug your kids and be nice to strangers. Even the annoying ones. Love, Candy ---------------------------------------------------------------------------------------------------------------------------------------------------- Enjoy the little things in life, for one day you'll look back and realize they were the big things - Kurt Vonnegut --------------------------------------------------------------------------------------------------------------------------------------------------
5:50p SATURDAYI sat down at 5:50 to start to write this. It's the first time that I've been with my computer all day. Then I realized I needed to track down Beck and find out when he wants to come back up here. Not an easy task. When I'm in my house, I can't track him down. The beauty of my wonderful neighborhood is that Beck can just roam and play with his buddies. So my wonderful neighbors are taking care of him today and I think tomorrow. Life is a bit normal for Beck yesterday, today and tomorrow with his buddies. He needed that so much. Well, it's now 7pm. Funny how time is crawling like it's not even moving, but the day kind of flies by. I spent most of my time with Nora today. Sue was her nurse. New nurse for us. Another wonderful, caring human being. I remember at the beginning of this thinking that I didn't want the nurses to leave. The next one might not be as good. But they are all fantastic. Well, let's talk about Nora for a while. What an amazing girl. So, the pentobarb(sleepy med) is down every 8 hours. And she is tolerating that. Heart rate, brain pressure, temp, o2 saturation all good. Her eyes are reactive. So when they shine a flashlight on them, her pupils move a bit. That's great. I'm sure I'm forgetting something huge to report, but I can't think of anything right now. Um... eventually she will need surgery on her left arm to fix the break. I guess she might beep in the airport. She will need surgery on her corotid some day. She may or may not need surgery on ligaments in her neck. But that's all down the road. Nora's cousins, aunt and uncles visited her today. Aubs, Maura, Kally, Chris, and Tim's brother Mike. It is not easy to walk into Nora's room for the first time. It was so good to hug them and have them share some time with Nora. If you were to walk into Nora's room, you'd see a lot of equipment and monitors. If you can ignore all of the stuff that is on her, around her and coming out of her, it's just sweet Nora sleeping. Her eyes are closed. Her mouth is a little bit open. She looks like her pretty little self. I rubbed some lotion on her feet and hands. I was able to reach over to kiss her on her cool little cheek. She had a very uneventful day, and will hopefully have a very uneventful night. A woman saw me smiling earlier and asked if she had opened her eyes. No, I'm not even thinking about that. After all, this Pentobarb will be in her system for maybe up to 7 days. I don't think that far out. I am more in the moment than I have ever been in my life. As I type, it's 7:16pm, and that's so mentally where I am. The entire ICU is embracing us. So are all of you. Not a bad place to be right now. Have a wonderful night. Love, Candy
10:15 Saturday nightGetting ready to hit the sack. We are so tired. The beds at Ronald McDonald House are amazingly comfy. That memory foam kind of mattress. I'm getting one when I get home. We left Nora in the hands of her wonderful nurse, Colleen. I think the thing I'm focusing on is hoping Nora's ICP levels stay low as the Pentobarb is decreased. Nora's brain pressure needs to stay below 20 on her own without the help of medication. So while you all are praying, you can think about that part of it. I'll probably wake up in the middle of the night just to check in with Colleen. It's so nice to know I can make a quick call to check in. Too tired to write any more. Talk to you all in the morning. -Candy
11:15am Sunday Morning Well, Nora is ahead of schedule. They actually just took her completely off the Pentobarb. That wasn't supposed to happen until tonight or tomorrow morning. Her ICP pressure went up to 27 (over 20 is bad) last night, and they had to give her something to bring it down. I'm losing track of which medicine does what. But as of now, her levels are good, and she is not needing anything extra to help with the ICP pressure. Her o2 is down to 50%. She is tolerating that. I really think that all of our prayers are being heard. Tim and I slept straight through the night. I didn't move. Ordered breakfast in the hospital that gets delivered to Nora's room. Tim had pancakes and I had pumpkin french toast. Real maple syrup. I'm beginning to be able to eat again. Haven't been able to drink coffee yet. But I'm starting to think about it. There was a woman this morning that was crying here in the lounge. I went over to her and we just cried and hugged each other. Her granddaughter is here. Three years old named Addy. Please add her to your prayer list. Little Addy has a condition that only 74 other people in the world have. I wish I could remember what it's called. Little Addy is having a very tough time. God Bless Nora and Addy. -Candy
6pm SundayIt's Tim. Just a quick note to say hi and let you guys know that we are keeping positive and hanging in there. Nora is definitely doing her part and I am so proud of her and the progress she is making on her journey back to us from this healing sleep. It is going to be a long fight, but we Neely's are scrappers and we are up to the challenge. So, I thought it might be a good idea to get away from the hospital for a bit to get some laundry done back at the Ronald McDonald house. While I waited for the laundry, I straightened the room a bit and rearranged the chair to give us a bit more room. I opened up the window shades and let some sun in. It was raining, but somehow it felt sunny to me. I then walked into the little part of town about a block away to get a candle. We were thinking that Nora might like a little mild fragrance in her room as she does when at home in Malvern. So there I am standing in front of these candles, so clueless as to how to pick the right one, when this nice, college aged girl, working at the shop approached me to help. Well, she was the lucky human to be the first stranger I had to deal with since we have been here in Burlington. I think I tried to speak but instantly started weeping. She was very kind and let me just cry. When I finally pulled myself back together she told me that I was definitely "getting the employee discount" for whichever candle I wanted. I grabbed the first one within reach, paid her and went back to the room. Somehow I feel it will be the perfect fragrance or I am going to hate it. Anyway, baby steps. We are thinking of you guys and how much your love and support means to us. Keep on sending the love. We need it.
7:20p Sunday EveningOne week ago tonight, pretty much to the minute, Tim, Beck, Rory, and I arrived here at Fletcher Allen Health Care. We were greeted by folks in the ER, and they took us right up here to the Surgical ICU. We met Katrina within minutes, and she walked us to a room to give us the low down. I saw her yesterday for the first time since last Sunday night. She and I hugged. I told her that she will always be in a special place in my heart. She has such compassion and broke the news to us in a way that we felt confident Nora would be okay. We knew by her manner that things were very serious, but we also knew that there was no mistaking Nora was in the right place. It's hard to believe that it's only been a week since Nora's accident. I almost don't remember what it's like to live anywhere but this hospital. Tim did get out today for a few hours. I was impressed he did some laundry! I stayed here in the lounge and went in and out of Nora's room. I missed Tim. It was a long few hours without him. Well, Beck will be going to school tomorrow. I hope that goes well. I'll miss our morning panic as I try to get us out the door in time to catch the van. I miss Lilly, our dog. Actually, I've forgotten that I have a dog almost. I'm sure she's driving Rich and Fran and Uncle Steve crazy with her obsession for food. I miss hearing Nora say, "Oh Lills." I miss plopping Lilly on Nora in the morning and watching her lick Nora's face until she smiles. I miss smelling that incense and candle Nora's been burning lately. I miss hearing her singing in her room. I miss trying to figure out what the hell to fix for dinner. I know we have entered a new phase of life. I started Nora's journal today. It took me all day, but I have her all caught up. Started with the night before the accident and have gone right up until an hour ago when Tim and I sang the Carpenters' "Close to You" to Nora. I'm scared for these medicines to wear off and learn what is working and what isn't working. The nurse said it would be like one step forward and two steps back a lot of the time. Ugh. I just want to scream. I didn't post much about Nora's condition today, because it seems like just as I would finish a post, her condition will be different. Overall things are fine. They did take her completely off of the Pentobarb. But they needed to put her on something else instead. I forget the name. This drug does the same type of thing, but it's quicker to get in and out of her system. Nora's O2 was at one point down to 45% but is back up to 90 or something. Her ICPs were up and so they had to give her this new drug. I found myself not being able to hang in the room as much today. Just looking at the numbers was freaking me out. So I spent the bulk of the day journaling. Tim came back and had bought me socks. Those smart wool kind. Oh, my feet are happy tonight. Well, it's 7:45. Middle of the shift change. Tim is here. This is hard, but we are together. Beck will be up on Wednesday. Thanks for your continued well wishes. -Candy
11am Monday It's Tim. Good morning everyone. When we went in this morning to see Nora we got the awesome news that she is acting a bit responsive today!! When we said good morning to her she opened her left eye!!!! The Doctor then came in and said she was also wiggling her fingers and toes a little when they asked her to! This is such promising news. She still has a lot of heavy medicine in her system so it will be a slow process, but she is doing so great. She also seems to be coughing a little which means the brain is sending signals to other parts of the body. Another baby step that feels like a big leap. Keep praying, this week has started off on a good note and your thoughts are healing all of us. Be good to each other out there. Thanks.
2:30pm Monday March 31What a day this has been. As soon as I wake up, I just want to be at the hospital. I took a look in the mirror and thought my hair really wasn't too bad. Maybe I could just skip the shower and get there quicker. But I did talk to Nora's nurse at 3am and also at 8am and knew that she had had an uneventful night. So I took the shower. I'm sure Tim was happy about that. Nora is still pretty heavily sedated. The pentobarb is supposed to be lingering for a few days, and they also have her on some other kind of sedative. Plus the pain meds that I'm sure would make most people unable to drive a car or think straight. Despite all of that, like Tim mentioned above, she is responding quite a bit to pain and to us. She is coughing, licking her lips, opening both eyes, moving both feet, and moving her fingers on her right hand. She squeezed Tim's hand a few minutes ago so hard. Like a real, real hard squeeze. She is definitely in there. I can't imagine how scared and confused she must be. We keep telling her general things like that she has had a skiing accident, she's in Vermont, she's been in the hospital for 9 days, that she is hurt pretty badly, but the nurses and doctors are taking such good care of her and she is getting better every day. I can only imagine it is going to freak her out to not be able to talk. I think she is aware that they are doing trach care for her, etc. It is comforting to know that everyone says she won't remember this stuff. I hope not. We received the most beautiful prayer shawl today. Tim and I were in this special lounge area just for surgical ICU families. There is a lovely volunteer staying in here with us. The three of us held the shawl and said the prayer together for it. Then Tim and I went down to Nora's room and laid it on her bed. Such powerful little moments that we have experienced these last 9 days. Nurses and doctors are stopping by to visit to check on Nora- the ones that were with her last week. I haven't watched the news since last Saturday. I do feel like I'm in a bit of a time warp, and I feel far removed from reality. But my glass is so half full right now. -Candy
April 1. Tuesday Hi Everyone, It's TIm. Nora is doing really well. As we enter this next phase, we may not update as much as we have been because we want to concentrate our energies on Nora. Just know and take comfort in "no news is good news" . She is making tremendous strides in her journey back. We love you guys.
2:40pm Tuesday, April 1stI think it's day ten. Nora is stirring a bit. She is able to nod yes/no. She is wiggling even the left hand now. I know they tell me that she won't remember this, and I hope that is true. She answers that, yes, she is in pain. Yes, it's my arm. No, my stomach doesn't hurt... More X-rays today reveal that her clavicle is displaced. The ortho guys are chomping at the bit to fix her poor little arm, and now I guess collarbone too. The neuro guys need for her to be much more stable before any of that happens. I'm having a hard time keeping my thoughts straight today. Needing to think about where she will go for rehab, how she will get there, applying for medicaid... I'm hearing the words but not letting them sink in. I'm in her room so she knows I'm there, but I'm leaving because I feel like I'm the thing making her blood pressure go up. I'm tired, and I can feel myself starting to get angry sometimes. I'm tired of being polite to the other families in the lounge and find myself just staring at my computer. That makes me feel bad. And then I start thinking about how Nora could have died... and how I thank God she had a helmet on. And then Nora's nurse told me that there were two other teenagers (since Nora's accident) that had accidents snowboarding and didn't make it. it's just awful what can happen. Well, I'm gonna go. I'm not that good at concentrating right now. I carry around Nora's little rock still. Along with the rosary and the guardian angel from Nora's Aunt Marian. You all are up here with us in spirit. Thank you. Love, Candy
Wednesday Apr 2, 2014Well, for the last two nights I have posted once we have gotten back to the McD house. Both times, something has been up with the the internet connection. I get kicked off and lose everything I've written. Last night most of this post got deleted. My awesome brother-in-law and sister have the whole thing printed out. I thought, well that's just how life is. One minute you're humming right along, and the next minute stuff can just get messed up. But then the next minute someone (like your family and friends) comes along and makes things better. So I don't have any idea what the last posts have even said. The days are running together. We can't remember all the way back to the morning when it's nighttime. The days are long, and so much happens. We haven't seen Nora this morning yet, but yesterday she was nodding yes and no, indicating things like: she didn't know where she was or what had happened to her, but she was in pain. Her arm hurts, she's sick to her stomach. She wants her snowie. She slept a lot yesterday. She got a lot of X-rays. They took the "bolt" out of her head (the antenna thing that measures oxygenation and temp, I think). Stuff is getting better. She is shaking. They still have her with this arctic sun thing that makes her core temperature low. Like a hibernating bear. But then they have blankets on her. The prayer shawl too. It was is exciting to be able to communicate with her, but I feel a huge sense of responsibility with it. What in the world do I ask her? I can tell she is freaked out. I can tell she wants to tell us something. I asked her if she wanted me to ask her questions. Yes. But then what questions do I ask. Oh boy. So now the day is looking very different to me. I am looking forward to it. Want to hear? Beck is on his way up. Arrives at 11am. We'll have a nice visit with Norsie, and then we are taking Beck out on the town. Yep, we're getting outta dodge! They've got our number, and we don't need to worry about surgery. I was really down and bitter and negative yesterday. I was angry. I didn't feel like looking at anyone or talking to anyone. Today is a better day. And I know there are ups and downs. Everyone keeps telling us that. Tim is listening to the Beatles right now. We've got the whole lounge to ourselves. We're singing. People are walking by and waving. Gonna be a good day. Hope you all have a good one too. Love, Candy
*********You can find more of Nora's story and progress in the JOURNAL SECTION of this website.*********