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rmlyonsfamily

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Everything posted by rmlyonsfamily

  1. Yep - we have a blog. www.rmlyonsfamily.blogspot.com
  2. K is scheduled for a "Radioisotope Gastric Emptying Test" tomorrow. I'm assuming it's to see if the Dysautonomia/POTS/NCS is affecting her GI system. Sounds like it could take a while??? Said she'll swallow something with this dye in it and they watch it go through her system picture by picture. Couldn't that take several hours?
  3. K's doctor came back in to town tonight (her EP Cardiologist, Dr. Kanter). He called the floor tonight to check on Kayleigh and it just happened to be when she was in bigeminy for almost an hour! He was supposed to come in Monday, but decided to come TOMORROW instead! Love that man! So - we should know more then!
  4. I should clarify - her name is Kayleigh, we just call her Kaybers every now and again! She is 16 - 17 on July 26th. She is still having PVCs and they think that they are somehow related to the POTS. She had GI come see her and they are gong to do a test Monday where they watch something go through her system after she swallows it to see if her stomach/GI is involved as well. Mornings are her best few hours of the day and as the day progresses she just drains and then the PVCs start. They give her great care here and every doctor we have seen has been so helpful and understanding! I've had my ups and downs. I drove 2 hours back home last night to get some rest, my husband stayed here. Leaving her was the hardest thing and I cried half the way home, then cried when I got home. Just emotionally drained... but today I feel a bit more refreshed. Can't wait till her doc gets here Monday!
  5. We had a long night with her, but we managed. Called Duke clinic at 8:30 to get her an appointment today. They called back at lunchtime with a bed for her instead. So... here we are. She had another 45 minute run of PVCs but they were right on it and drew labs as soon as it started. She came out of it on her own and is resting peacefully. We know we'll be here until Monday at least. They plan to just watch her closely and track her meds/responses to the meds and then go from there when her doctor returns Monday. We are ALL much more relaxed now that we are here!
  6. lieze - how did you get your diagnosis of AVNRT? Do you know what the rhythm looked like? I have a few pictures of Kayleigh's bazaar rhythms.
  7. Just went online and saw that K's labs from her tilt table are up... As she flatlined they drew the Norepinephrine. It was only 337 and normal is 70 to 750, says it's within limits. Lovely.. just lovely! Thought we had all this figured out.. and now, not so much!
  8. I feel like we are in a bad dream. Yesterday we decided we wanted K moved to Duke where her team is. 3 hours later the doctor at Baptist came in and said that Duke refused the transfer and they were discharging her home. They felt she was stable - despite the PVCs and symptoms. She is actually feeling WORSE than she was when we had her in the ER Monday. I was shocked, but didn't know what to do so we brought her home. Last night I noticed that Baptist changed some instructions on a med so I called the Ped Cardiologist on call at Duke. I was SHOCKED to hear that they had been waiting on us all day!!!!! I told him what we were told and he said his notes read that we were bringing her by car!!!!! After talking with him for a while (it was 9pm) and giving him some vitals and how she was feeling, we kept her home for the night. Waiting to hear from her nurse this morning to take her for a clinic visit where they will decide if they want her in the hospital or at home until Dr. Kanter returns on Monday.
  9. I have an update one and I'm certain it's one that will get everyone's feather's ruffled... I know ours sure are! We are actually HOME with K and nothing has been done or changed other than she is now throwing more PVCs with increased chest pain. Nice huh!?! Anyhow - last night we requested a transfer to Duke. This morning the doctor came in and said he was suggesting that K see a psychiatrist because he felt strongly that she actually has anorexia, even went as far as to say that anorexia can cause the low heart rate, PVCs, etc. Didn't matter to him that we explained before April 12th - the night she collapsed - she could eat us under a table and was a healthy weight! Furthermore - he went on to say that he talked to Duke and gave them his thoughts, so Duke was refusing the discharge also agreeing that she needed psych services! Didn't matter that she was unstable and throwing PVCs left and right, we could either take her home today or we could take her to the ER at Duke instead of direct admit transfer and force her admission there. So - we brought her home and called our EP nurse. Waiting on a return phone call. On another note - she was started on Robinul Monday. She didn't start throwing the PVCs until Monday. Yesterday evening it occurred to me that the extreme nausea sets in about an hour after the Robinul and then after that the PVCs start with the chest pain and shortness of breath. After an hour of that she bradys out big time in the high 20's and low 30's. Today I paid closer attention and watched the telemetry monitors. 30-40 minutes after the Robinul you can see her heart trying to beat faster. It would go from 30s/40s to trying to jump to 60/70 and throw a PVC, then repeat a few times until shew as stuck in PVC for about an hour, then it would settle in the mid 40's and slowly drop from there until the next round of Robinul was given I mentioned it to the doc who looked at me like I was nuts! So tonight - we are home - and guess what drug K is NOT getting?!?! Her doc at Duke will be back Monday and we will take her there then unless she worsens - then we will drive to Duke, we will not stop at Baptist at all! This is the most frustrating thing I have ever been through!
  10. Nope - he hasn't came back in the room yet. The nurse just brought her last Midodrine dose for the day and they have decreased her to 7.5 mg. Not sure why - even the nurse isn't sure why. My husband is at a point of wanting to pack her up and make the 2 hour drive to Duke!
  11. Brought her to the local ED last night b/c her BP went way up and her HR went down to 33, c/o shortness of breath and chest pain. Got here and decided not to transport her to Duke b/c it was so late and she was so unstable. She was admitted here into the "high acuity" pediatric unit (step down from PICU). Since here she's seen 3 pediatric doctors, 2 pediatric cardiologists, and SEVERAL med students/fellows. This morning she started throwing PVCs and her feet were nearly black they were so discolored! All docs agree it's time for the pacemaker. Only this hospital doesn't have a Pediatric EP doc... so they called the adult EP doc. His fellow came up first while she was throwing PVCs and in a bad brady... he says yep, time for pacemaker. His attending comes in.... NOPE! He won't do it! Don't really want to transport her 2 hours, she doesn't want to be transported 2 hours, we just want it done, but he wants to do more meds! I told him our stance and he says "I'm going to have to go think about it and come back." That was 3 hours ago! Meanwhile... her BP is low, her heartrate is 36, she's lethargic, can't eat a thing b/c of nausea, can't sit her up in the bed b/c of the dizziness and swimminess, etc. I am one ticked off momma right now!
  12. Really?!? Dr. Kanter is the "Dysautonomia Guru" at Duke Children's. He does work with another, Dr. Carboni. Her primary cardiologist there is Dr. Camitta. But all 3 think that the pacemaker may help her. Then again, K not only has 2 forms of Dysautonomia, but she also has a problem with her SA Node in her heart. So - when she has an "episode" - her heart is stopping completely.
  13. I'm putting together a list of questions for Dr. Kanter in regards to the pacemaker that he's considering for K. What else should I ask? What would it be set to pace her heart at? Will it improve her overall activity tolerance? What meds would she still take or have to take with it? Would it be permanent or could it come out down the road? If it's longterm - what does it mean for pregnancy/child birth? How many days in the hospital? How many days out of school if it's done during the school year? Activity limitations? (i.e. can she still dance with it?) How frequent would MD follow up visits be to check it?
  14. We yanked the patch off early this morning. She became very disoriented and was really struggling. There is no way she can function on this med... she's way better off without it. Supposed to call them tomorrow morning.
  15. Got busy with K and didn't come back here to update. They - at first - said to take the patch off. Then an hour later called back and changed their minds. We put the patch back on and we are supposed to have her under constant supervision. If symptoms worsen remove the patch. Otherwise leave it on and call them Monday morning to discuss options. This journey is sooooooooooooooooooooooooo frustrating!
  16. The only new med they put K on this week was Scopalamine patches. Dr. Kanter said that she may feel "swimmy" headed and have trouble concentrating. He didn't say anything about vision specifically. But, tonight, she is having trouble seeing. Everything in her vision is very blurry and she can't read anything! I've called the pager for her doctor, but no return call yet. Anyone else ever been on the Scopalamine? Same thing happen? If they don't call soon I'm yanking the thing off her!
  17. This has been one area that really bothers K. Before April 12th (the day this got out of control), she had lots of friends who were always here at the house or she was always with them. Our phone would ring off the hook. She had a quite active social life! But now, because she doesn't have the energy to go out and do things, they've stopped coming around. The first few weeks after her collapse they'd call to check on her and a few would stop by. But now.... not many at all. She has definitely learned what being a true friend means and has even said a few times that she realizes now how there's a few people that she really didn't "hang out" with much, but they have really became good friends and been there for her.
  18. She is to wear compression stockings or he wants her to wear biker shorts a size too small. The pharmacy ordered her stockings for us because she is so tiny. I haven't gone to the store to get her biker shorts yet. He said to wear one or the other at all times, she didn't have to wear both.
  19. K is having a hard time bouncing back today after all that happened yesterday. I'm assuming it's because she was asystolic yesterday. Her BP at 11am was 68/42, heart rate of 41. Right now she's at 81/41 and heart rate of 44. Ughhh! I hope she starts to feel better soon!
  20. Wow! What a day it was! After it was all said and done, she was back there about 3 hours. They called us back into the room with her and the first thing they told us was "after about 23 minutes she went asystolic....". My mouth hit the floor! My husband looked a bit clueless so Dr. Kanter then said "she had no pulse or blood pressure.... she was clinically dead." Thankfully, it was a very controlled environment and Dr. Kanter and his nurse Angela are FANTASTIC and were right on the ball! When her heart started beating again though, it was way out of rhythm, very erratic, and took a long time and some meds to get it recovered. They said she has 2 different things going on, and possibly even 3. First - She without a doubt has Neurocardiogenic Syndrome. Second - She "more than likely" Postural Orthostatic Tachycardia Syndrome. The labs he drew during the test today will give us the 100% definitive on this, but he said he expects them to come back positive based on what he saw. The only thing that he saw that indicates it may NOT be POTS is that her heart rate only went up to about 90-100 beats per minute. (They drew the labs right as she was crashing on them.) Third - She may very well have a problem with her SA node in her heart. This is evidenced by the arrythmia she was in from the second they hooked her up to the monitors as well as the difficulty her heart had recovering from her asystolic episode. The SA node should have put her heart right back into rhythm and it needed some help. Where do we go from here? She is to continue the .3 of Florinef and 10mg of Midodrine 3x a day just as she has been taking them. They've also added something called Scopalamine. Still not sure I completely understand this one... He wants to put her on a beta blocker, but can't do it at this time because her heart rate is too low all of the time.. If she has no improvement in 2 weeks he has another drug he can try before we start giving serious consideration to a pacemaker. It is looking like this is going to be part of her future, but he wants to be certain that he's tried every other avenue first and we are ok with that. She is home tonight and feeling very blah, weak, and tired. But she is stable and doing ok. Hubby and I are doing ok too... just very tired!
  21. I just talked to our doctor last week about this subject. Two years ago, K had a TERRIBLE flu with very high fevers! It was the one year I didn't get my kids vaccinated and she had the worst respiratory flu I've ever seen (and I work in healthcare as an Occupational Therapist!). It lasted 4-6 weeks then she developed something called Labrynthitis and within a few months had mono. Since then she has had one bizarre illness after another leading up to now. Our suspicion is that for K, this started with that flu somehow.
  22. This week has been a little better. We also got her Ensure and she loves it! She's been drinking it at least once a day. The other switch we made was from water to an all natural white grape juice, she seems to drink that fairly well. Eating is still an issue... I guess it's one step at a time.
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