Monday, December 1, 2008
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Sunday, November 30, 2008
2 weeks and 2 miles
Marki is doing great. We saw the Dr. again this morning to check on the fluid behind her heart. It is still there - but the amount has not increased. At this point they do not believe they need to do anything to relieve it. She will be checked again next week - this is also when Maranda will be going in to do a standard check on her heart to ensure she has no issues. - Though Marki's anomaly is not known to be genetic, they suggested we have her checked just to make sure.
As far as energy, she is doing good here also. Because she is short on blood and will take another month or two to totally build it back up, they expected that she would remain pretty tired most of the time. But... As far as we can see - this is really at a minimum. We were out all morning at the Drs., went to a store or two and then lunch - so she came straight in a went to bed - it was a pretty long morning for her. But out side of times like this - she is ready to go.
We resumed her walking the day after 'the event' - and it has being going great. The next day we walked about 1 mile at a slow 32 min pace - she said it was easy (but boring). The following day - just wanting to do about a mile then also - but we ended up doing about 1.75 miles - started on the beach and then decided to walk to a friends a couple of blocks away - the first mile pace was 24 and then the 2nd was around 22 min/mile. Still she felt fine. She walked the next day with her boyfriend 2 miles on the beach and then back to the house. She said felt a little tired at the end of this one. I was really only expecting her to be doing about a mile at this point in time - but she was doing so good - she just kept going. We will now increase the long walks to several times a day. Right now she has only been adding these in with shorter walks. The Dr. also told her today she can also add in stairs - or a stair stepper. - This will help build her heart and lungs again. ( Besides building for just standard heart surgery rehabilitation - she is also wanting to get her heart and lungs ready so that when she is released - she can easily move right back into her soccer (just as playoff are starting... and running - just as track is starting)
We prayed for a great attitude - and for her to want to do things - be careful what you ask for - The Dr. had to tell her again this morning she was not indestructible - and just because she felt good didn't mean she could do it all so quickly. She would not be a good poster child for 'the suffering and hard recuperation struggles of heart surgery." - At least not at this point in time. - God has truly answered our prayers. Her exact quote "Everyone said this was a really big deal - but it doesn't seem like it to me". Someone quickly quipped - "that's because everything went ok."
We are going out-of-town to Thanksgiving (family reunion) so this will be nice for her to get away and hang outside in the fresh air for a couple of days - we will be in the middle of the woods - and will be taking the camper.
I am working on a video that I should publish in the next week or so and will also post her pics on my photo site (but this may take longer). As soon as I have this done I will let you know.
Thanks again to everyone for your support and prayers.
...Mary ..Mark, Marki and Maranda
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One week down...
One week down and Marki has been doing very well. She is steadily getting stronger - walking and moving around a bit more. She had a group of friends over earlier this week and we were laughing because if you weren't watching them - and noting Marki was not moving her upper body - you would never had known she had just head heart surgery. - All the giggles and silliness were echoing from the adjoining room.
We went on her first long walk yesterday - it was a beautiful day and decided to go walk on the beach. When I asked Marki how far she thought she could walk she said 'All Day' - I grinned inside thinking she had no idea. - But she said she was feeling good so we figured we would go as far as she felt she could. - we were about 11-12 minutes in (a slow quarter mile) when she said - "Oh my chest is hurting' - not her incision - I then begin feeling her pulse to get her heart rate. It was beating fast and I was concerned her heart was being damaged. She said she felt fine - but then "I" went into my adrenaline rush - needing to sit and rest - I had been strong the whole time, but then the thought of something happening to her right in front of my eyes - I apparently couldn't handle it. I finally got my legs under me again and all was fine. It is a bit funny now - but was not at the time. - The Dr. said Marki would have to determine the type of pain to determine if this was heart related - but believed it to likely be a twinge with scar tissue. ( I was giggling as I wrote this - Marki kept asking what I was laughing at)
We saw the Dr. this morning for her check-up - everything looked good and thought she was doing well - however they did note that she does have some fluid around the back of the heart. They don't' seem to be too concerned at this point in time. - But did schedule a new appt. for next week to check the fluid and make sure it is not getting larger. If this is the case, they will put on her some things to try and eliminate it. - So please pray that this resolves on it own.
Thanks again to every one for everything you have done for us. All the prayers, cards, food, etc. We really do appreciate them.
Mark, Mary, Marki and Maranda.
Home at Last
Marki is home. Yeah! I can't believe how quickly they release everyone these days. But I'm sure she will feel more relaxed at home. She had a good morning this morning. Waking up early - taking a small loop around the floor - then a couple of hours later took 2 laps - one large and one small. - So Very Good. Her breathing is still not as deep as it should be - but because she is walking they felt she should be good to go. So pray she gets her breathing worked out - We do not want to see her back in the hospital with pneumonia. She needs to be breathing deeply.
She was not feeling too well on the way home - but that was likely due to the long sitting and all the movement. - She is now resting in bed.
Feel free to drop by the house to see her. She is still expecting to see everyone.
I just want to say again. - THANK YOU for all of your thoughts and PRAYERS. There is no doubt in my mind that things would not have gone so well without them. I know our Father in heaven is looking out after her. He gave her the symptoms to save her life. He will continue to watch over her. She had a wonderful attitude through all of this. - Her nurses were all very impressed. The next 6 weeks will still be challenging - so please keep the whole family in your prayers as she continues to heal.. and as we will have to continue to do everything for her - so this will be a whole new event that all of us will have to learn to deal with.
Love,
Mark and Mary
Looking Good
So far so good. Mark stayed with Marki last night so that I could go home, get some sleep - I had an 18 miler training run this morning for the 26.2 with Donna - The National Marathon to Fight Breast Cancer." Needless to say, she was not thrilled that I was leaving her. But I let her know that she was doing great, stable, and that her Daddy was going to be with her. I couldn't afford to miss this run - But after 3 days with little sleep, spending alot of time on my feet, not really running much this week, and not eating properly - The run went surprisingly well. I'll throw my plug in here... my theme for this years run is "Running in the Gap". I came up with this one day while running and thought - I'll run for Marki while she cannot. Each year while training and running for those impacted by breast cancer, I also raise funds to support those in need. - Please consider a donation. - Here is the address to my fund raising site - if you are interested.
www.active.com/donate/2009DonnaMarathon/MLyon43
FYI...MaryKay - saw your note below, I was running on the River Walk this morning also.
But...back to Marki. Mark said she did good this morning - took a lap around the hall way. When I got back from my run, she had a room full of friends and they were watching a movie - You know, "A Slumber Party" without the stay over. I came in once and she had the pillow to her chest - from laughing.
She is resting now - So praying the rest of the day and night go well. As of now, they are saying that she may be released tomorrow. (but not yet confirmed) - Wow, I can't believe they let her go so fast.
Please continue to pray for a speedy and safe recovery.
Love, Mark and Mary
It's been a good day
Today has been a good day. - She has had her moments, but all in all she is continuing to improve steadily. She has gotten out of bed several times today, and sat in the chair several times - took some walks to the potty. She had an issue with clearing her bladder since they took the cath out but, just as the were ordered to call the urologists, we finally came up with something that helped her out. - Thank God. - She did have some bouts of nausea and did throw-up but all better now.
She is completely off of all IV's now, no more morphine, really just on an antibiotic, and two pain killers. - So she is doing good. They removed her chest tube today and the IV pick that was in her neck also. So at this point, her only attachments are the heart monitor, the respiratory rate monitor, and the blood pressure cuff. She still has two IV ports in one hand - but these will remain until she leaves the hospital.
Her color is back, we got some smiles today, and more conversation. She ate for the first time also. It took her from 9:00 in the morning until about 5:00 this evening to eat a small bowl of dry cheerios. And then tonight, she ate just under a half of a turkey sandwich. Little by little. Today made us all feel better. Thanks again for all of your prayers - there is no doubt that these are answers to prayers.
We are waiting her move to a regular room (on the 6th floor) - I was awaiting sending this until we got the room number, but it seems to keep getting delayed. - So as of now...and this could change... we are scheduled to move sometime tonight. As soon as I get the room number, I will post it in the 'quick update' section at the top of the page.
Thanks again for all the thoughts and comments and prayers. We really do appreciate it.
Love, Mark, Mary, and Marki
Better days ahead
Well, She started out good...at least for a few hours. It has been a tough day. Marki was doing wonderful until... they started reducing the meds and then having her 'sit-up'. All morning they had her chest elevated and was doing really good, and just for "Phil H. she was doing her breathing with everything she had, and made sure that I kept her on track. However, once they decided to make her bed a chair and she had to sit fully up and drop her legs, she became nauseous and in bad pain again. They finally got her medicated again and she had about 30 mins of relative rest before they had her get out of bed and sit in a real chair. She did good here - though she was nauseous, between the fanning and the cold clothes she never did completely do the deed. - Unfortunately though, she got hiccups - not something you want at this point in time.
It was good though - She sat up for about a hour - a little longer than they wanted - so this was good. One step at a time.
She is resting in bed again - with all the lights out and the meds back in play. She is talking again - with orders of what to do and what not to do - so I think she is doing better.
Pray for a good nights rest for her - and a better day tomorrow.
..ml
A Good Nights sleep
Marki had a good nights sleep. Only waking when they came to poke and prod her. She was a bit more alert last night and we actually had a short conversation (not that she will remember).
They have her on a couple of meds to keep her blood pressure low - but plan on weaning her off of all of those except Nitroglycerin today. - She is also on a couple of different pain meds - they will be reducing the one that is sedating her today as well. She is continuing to take an anti-nausea med, she has not been able to keep the few ice chips down - so they are trying again today.
They also plan on getting her up and out of bed today - but not sure if they will get her walking - it depends. I know they will have to do it here - because I sure couldn't make her get up.
Overall they believe she is making excellent progress.. The nurse said all the test they ran last night looked good. So keep up the prayers.
Please feel free to call if you have any questions - or just want to talk.
Mary....
PICU Update
Marki is doing well. She is in the PICU and will likely remain here until Friday. Her surgery went well and she is now resting - somewhat staying in and out of it. They expect she will be like this throughout the night but hope she will be more alert tomorrow. She has really only spoke enough to say "My chest Hurts" and that she was getting ready to throw up. They have given her some meds for the nausea and she finally just got on the morphine pump. So this should help her out in a little bit. They will keep adjusting to get it right.
Daddy is having a hard time - please pray for him to be relaxed. No Daddy want's to see his 'little girl' in pain and hurting. It's strange knowing that all you can do is sit back and watch (and pray) and there is nothing else you can do - and it will all take time to make it better.
We did get some really cool pictures of the surgery and heart itself. - She is the one who asked for them. I doubt I will post anything on here except one of her on the table and from a distance. As everyone may not be able to handle them - But If you would like to see them, just let me know. I won't be able to post anything though until I get back home though. (I forgot my card reader)
Feel free to call us on our cells. - But we may not answer it as some nurses may not let us use them - our current nurse said it is ok so we will take advantage while we can.
Thank you again for all of your prayers - There is no doubt that Jesus is watching over her. Please continue to pray for a safe and speedy recovery.
Love, Mark and Mary
Tick-Tock, Tick-Tock
Marki had a good day. We started pre-op at 9:00 and finally got to leave sometime after 2:00. Everything went smooth and the stick was fantastic - the nurse had it in Marki before Marki even realized she was starting. And Marki said she didn't even feel it. Yeah! - I posted pics of some of the fun she had today.
One more day and counting.. Here is the scoop.
Surgery of course is Wednesday the 12th - we have to be there at 6:30 and surgery begins at 8:30. -They said it will last around 6 hours from the 8:30 start so I expect we should have updates at around 3:00ish.
I was wrong earlier - There is only one ICU for Peds - So she will go straight from Surgery to PICU, but still expect her to be there for two days. Her surgery is taking place in Wolfson's POPS.
For PICU - She cannot have anything in the room with her, so it is confirmed - please do not bring any items, specifically flowers or balloons until she gets into her private room.
As soon as she moves, we will post her room and visiting information on here.
She keeps talking about a "slumber party" in her room with her BFFs - but we tell her - "I don't think so" - Let's hope she has that attitude afterwards.
Tah Tah for now - We are all feeling good! - THANKS for your prayers!
Love, Mark, Mary, Marki and Maranda
Pre-Op on Monday the 10th. and FAQs
Reality is almost here. Marki has Pre-Op on Monday. For this, they will be re-doing all of the previous tests they have run before to make sure there has been no changes or impacts to her heart since her last series of tests. Her fear of course is the needle - as they will have to draw blood. And, based on our last experience, as a result of her extreme fear of needles, this in itself is enough to send her heart racing - which obviously is not a good thing. So pray she gets a good stick too.
I have been asked a number of questions regarding where the surgery is, timing of events, visitation... And unfortunately, I don't have all the answers just yet -but will mention what I do know for now and will have some more answers after pre-op and then will update from there on out.
Where is the surgery? At Wolfson's or at Baptist...? They are both together so I won't know until tomorrow which one. So in relation, some have asked which waiting room. I will let you know.
When can she have visitors? She will be in Cardiac Intensive Care Unit (CICU) for at least the first day and then wil be moved to Pediatric ICU(PICU) as soon as she comes off the ventilator. So ICU for probably the the first two days. - ICU only allows family. We expect that she should be in a regular room on Friday. So antime Friday or beyond should be fine. As soon as she is moved to a regular room, I will post the information on here.
Some have asked about flowers, etc - She cannot have these in ICU because of the breathing equipment. (At least that is what I have been told) so if you are going to bring her something, please wait until she has been moved into a private room . But if I hear otherwise, I will let you know.
BTW her favorite flowers are SUNFLOWERS. - though I don't know how readily available those are this time of year.
Thanks for your support and prayers ...ml
Meeting with the Surgeon
We met with the Surgeon, and some of his staff, for the first time this morning. He reviewed the whole procedure on how they expected to repair the artery this morning. “Simply stated”, they plan to make a larger hole where the artery comes out and then open the artery length-wise to make it larger and then attach the elongated opening onto the aorta. This will make the artery itself larger therefore allowing the blood to flow freely (even when being compressed), the larger/angled opening will also negate the existing kink so as to not limit blood supply there also. There is a chance however that once they get in there, they may need to do additional procedures – possibly additional openings - but this once again will depend upon exactly where they determine the artery is coming out and whether it is actually running thorough the wall of the aorta, which was identified as a possibility per their image reviews.
Though heart surgery is somewhat a routine event these days, her particular surgery is not. My understanding is they only do about 1 or 2 of these a year. Fortunately her surgeon is experienced on this defect and also lectures on it. So we are probably in one of the better places to have this performed. As with all heart surgeries, there is still risk – so this is not something we are taking light-heartedly (no pun intended :)
Marki is taking it all in and is doing well. She said she is not scared - I attribute this to your prayers for her to have peace. As I mentioned previously, she has a good friend who went through heart surgery a year ago where they implanted a defribulator in her chest which is hardwired to the heart. So she has been a good source for Marki to draw on as she goes through this event. Marki is however is counting the days until EVERYONE can wait on her hand and foot. She was informed that for the first six weeks, she can do nothing with her arms except basically brush\wash her hair, brush her teeth, eat, and use very restrained movement. She cannot pick up anything greater than 5 pounds…oh but she can do school work :(. Once she is able to return to school, she will have to have someone carry her books, etc until the 6 weeks is up. They want NO movement until they confirm the sternum is cleanly healed (if not, it would required them to go back in and do surgery on the sternum itself). However, after 6 weeks, she will be free to do pretty much anything that she feels up to. – Until then… it will be anybody’s guess. He expects a fast recovery, with the only limiting factor really being her feeling drained until her blood supply\iron is replenished fully. So he believes that is the only thing that will limit her to get back into her current shape.
I expect that I really will not have any further updates until we go into pre-op on Nov 10th. However she is still periodically still getting chest pains, so if anything changes between now and then, I will let you know. However, please feel free to give us or Marki a call, come by, etc. We are always up for an adventure. Marki is still going to the Fletcher soccer practices (though she cannot train) and we will be attending all the games except during the time of surgery and until she feels up to going again. So we expect that we will see many of you at the games. Until then…
Thanks for your thoughts and prayers!
BTW, I added a new pic of her and her Surgeon, staff.
Love, Mary …Mark, Marki, and Maranda
Surgery is scheduled
I know many of you were waiting an update last night. I apologize. I did speak to the Dr. but really did not know anything new until I spoke with the Surgeons office this morning.
They (the cardiologists and surgeon) did confirm that surgery is required. We currently have it scheduled for Weds, Nov 12th, with her pre-op on Monday, Nov 10th. The 11th is Veteran's day. We have requested that they move her up if at all possible. So we will have to wait on a cancellation.
We still do not yet know what they are exactly going to do. All they would say is ‘repair’ it. What that means is anyone’s guess, but it seems to leave a wide array of options. We have an appointment with the Surgeon next Friday so we should know the full scope of the surgery and the heart situation then.
As far as scaring, they were trying to see if they could do what was a bikini cut – which follows the bra line under the breast as opposed to the long vertical scar down the chest, however they said that this scar would actually be worse. But… he did say they will plan on making what they call a mini-incision. Likely this is still not pretty, but I guess better than the larger one. Marki will now have a new conversation piece on the beach.
So for now, we are still waiting on more information. Please continue to pray for peace and rest.
Love you guys,
Mary ….and Mark…
After the CT Scan
OK… Here we go…
Marki had her CT Cardiac Scan this morning. Outside of a bad stick on her IV – re-enforcing her fear of needles and causing her blood pressure to drop suddenly and nearly fainting -- all went well. Not sure if everyone knew but because of her allergy to Shrimp, they had to start her on prednisone and Benadryl the day before the procedure because of a concern with an allergic reaction to the contrast. – So far so good.
The Results… as expected, we are heading down the surgery path. The Right Coronary Artery is believed to be sitting directly between the left and right cusps and appears to be coming out of the wall (I am not a Dr. but as I understand coming out of the wall is not good). In addition it is higher than it should be, and is therefore being compressed between the Aorta and the Pulmonary Artery. It is also coming off at a sharp angle and therefore cutting\limiting the blood supply.
But… Surgery is not 100% (just 99%) until they meet with the group of cardiologist and the surgeon tomorrow night to review all of the images and confirm what they want to do and how they want to do it. She could not yet say exactly what they were expecting to do until they meet with the surgeon. They did confirm it will be open heart surgery but beyond that we will have to wait on the specifics. The Dr. is supposed to call me again tomorrow night to go over the basic procedures. The expectation is that we would then meet with the surgeon. Once I have more detailed information, I will pass it on. Marki’s only question was… “Do I have to get stuck with a needle again?” – Don’t worry about the fact that they are getting ready to do surgery on your heart J. I Love her!
Surgery… I do not yet know when it will be scheduled – she expected sometime in the next several weeks – as soon as they can get on the surgeon’s schedule, we requested to have it done ASAP. – Let’s get it over with and get her back up ASAP and doing her normal activities. The Dr. did say that they expected that assuming all goes well; she will be able to resume a normal athletic lifestyle with no limitations. – Yeah! Of course this will take several months. But no limitations are a great thing.
As this appears to be an on-going activity for some time going forward, I am going to open up a ‘Care-Page’ which is a website that will provide everyone a current status of Marki’s status. You will then be able to go take a look as you choose. I will also send emails when I update it so that you can be aware of changes as they occur. I have not yet done a full page setup – But the previous emails I have sent out are on the page, I will update with more Information and photos as soon as they area available.
The link for the Care Page is here…. http://www.carepages.com/carepages/158485/invitations/119444/3d8810cf508f5fcd1549bbdf8e04f4df6b0205c5
Thanks to everyone for their support! We really appreciate it. Please keep Marki in your prayers, she puts on the image that she is fine with everything – but as I previously mentioned – she doesn’t say a lot when worried. Though I have to say, that for those of you praying that she has peace – I believe she does. Oh yeah, pray for Mark, he said he is not doing well… and me… I’m doing ok – until I try to sleep.
Thanks Again,
Mary ..and Mark Lyon
CT Scan Scheduled
Whoo...Hooo.. The CT scan has been Scheduled for this coming Weds, Oct 8th in the morning.
Once we have the results and know the next steps then we will send you a new update.
Monday, November 24, 2008
First Status -Oct 2
I just wanted to give an update on Marki’s situation. But first to bring everyone up to speed in case you had not heard what is going on.
Approximately 2 weeks ago, Marki began having severe chest pains and numbness in her left arm, pressure, and shortness of breath – this continued on and off through-out the day (though I did not know until late that night). The following day she began to have the same symptoms along with pain running from her chest into her neck. This is when we took her to the ER – here is where we learned that she had several heart conditions that they noted were abnormal...but not necessarily abnormal for her.. A murmur (no big deal), Athletic Heart Syndrome (no big deal..for her), and Junctional Bradycardia (again no big deal ...for her) with the exception of the murmur (which they say most kids have) the other two are all due to her athletic conditioning. However, they still could not explain the chest pain, and believed it really had nothing to do with any of the pre-mentioned conditions. So in short... He decided to refer her to a cardiologist and restricted her activities until the cardiologist released her...just in case there really was a ‘cardiac’ issue.
We saw the cardiologist last week and after her echocardiogram they discovered that her right coronary artery is not coming out of the Aorta where it should. At first they believed this to be ‘abnormal’ but was ‘within tolerance’ and should be no issue. However after further review with another Doctor they recommended more images – better\more clear to determine exactly where the artery is originating. However they did not want to send her for the CT scan unless it was truly necessary – This is due to increased risk of cancer in children due to radiation. Therefore we elected to wait and let the team of cardiologist review the case and the echocardiogram results to determine the next steps.
So here we are. The group of cardiologists met yesterday and the Dr. noted that they ALL stated Marki will need to have the CT scan. From the best I could derive from the conversation – without the Dr. giving up too much... They are concerned that it is further over toward the left side then they originally thought... Or it is even possibly coming out of the left side which is not good. But from the original images – they could not say for sure (or at least were not telling me). – This anomaly is a approx .03 - .07 chance of occurrence.
So what does this mean? Depending upon where the artery is originating and at what angle it’s coming out will determine the next steps. It is possible they could take a look and determine that it is higher than it should be but is still ok. Or...where the real issue is that if it is high, kinked, having pressure placed on it - potentially cutting off the blood supply- or in the opposite side... Then this will require heart surgery. What they do will depend on the exact anatomy of the artery and where and how it goes into the aorta. With the fact that they all wanted a better image and based off the limited conversation – the expectation is that we are heading down the surgery path.. - She noted that we needed to be prepared for it.
So today...we are still waiting on the scheduling of the CT Scan...which they want to be done at Shands because it has the best CT imaging for the heart. The down side to this is they are saying that this may take a month to get the appointment. - Me nor the Dr. want to wait this long considering she is continuing to have intermittent chest pains (but nothing like before). - So I think they are trying to see what they can do. So pray we can get the scheduled ASAP.
Until then... Marki will continue to be on restricted activities. When I informed her, the first words out of her mouth was “So I guess I’m not going to state” referencing her Cross Country season that will be all but gone by then. But then as I started to say. ”Better.. She finished the sentence...”Better off missing State than being dead’. She is also missing her Club Soccer and potentially High School soccer seasons – which she is not fond of doing. As I understand it, this issue is one of the reasons of Sudden Death... You know, the ones where you hear that normal, healthy, even well conditioned Athletes drop to death on the field/court...with no previous history. - Fortunately (assuming this is as it seems) Marki had symptoms that allowed us to find this before it came to this. Thank You Jesus
I believe that everything happens for a reason – even if you don’t know it for years away... I Personally think some of the “symptoms” still all goes back to when Marki was hit by a very hard kicked soccer ball (We love you Vanessa!) in the Chest several years ago – we thought she broke her sternum but in the end they said it was a bruised xiphiod process - and took months to heal – but this is where she first started mentioning chest pain. For a long time, they just kept saying it was still due to a long healing process from the bruising, then on occasion we thought maybe it was reflux... But I believe if she was not in-tune to the chest pains after the hit, we would not be alert enough to address the heart. She also has a good friend ( and soccer team member) who had a defribulator implanted in her chest at the age of 16 – so we are very aware of the seriousness when you see those symptoms.
So with all that being said... Whooooo – sorry didn’t mean to be so long-winded. I have attached a CT scan (not hers) of the Aorta and the Right coronary artery. Her’s may not be this bad, but it will at least let you see what the Aorta and the right coronary artery looks like.
Please pray...1) for a CT scan to be done ASAP – this is for two reasons. First we obviously want to know ASAP what the situation is, but also if in the event she is released back to her normal activities, then it is sooner than later so that she does not miss anymore of the cross-county or soccer seasons (Which she really wants to be a part of).
2) Pray for God’s direction and hand is this situation and that His will be carried out.
3) Pray for Marki – and peace. She is not one to vocalize when she is worried.. and being teenager – that says enough.