rmlyonsfamily Posted July 15, 2011 Report Share Posted July 15, 2011 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! Quote Link to comment Share on other sites More sharing options...
kclynn Posted July 15, 2011 Report Share Posted July 15, 2011 Glad to hear you are there. I know you are relieved. Quote Link to comment Share on other sites More sharing options...
Yolaclover Posted July 15, 2011 Report Share Posted July 15, 2011 Feels so much better she is being closely watched and that some answers could be found, hope yr all getting some rest and that K feels better. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted July 15, 2011 Report Share Posted July 15, 2011 So glad to see this. She is in good hands! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted July 15, 2011 Report Share Posted July 15, 2011 I know that's got to be a huge relief for y'all. Def keep us updated! Quote Link to comment Share on other sites More sharing options...
RockiesGirl Posted July 15, 2011 Report Share Posted July 15, 2011 Yay!!! I'm sooooo relieved, as I'm sure you are too. Keep us posted! Quote Link to comment Share on other sites More sharing options...
enko Posted July 15, 2011 Report Share Posted July 15, 2011 Yay! Quote Link to comment Share on other sites More sharing options...
Olive Posted July 15, 2011 Report Share Posted July 15, 2011 Praying for ya'll. I know you are in good hands now. Quote Link to comment Share on other sites More sharing options...
delphicdragon Posted July 15, 2011 Report Share Posted July 15, 2011 I just read through the saga you've all been through. My thoughts and prayers are with you that Kayber gets the care she needs. (hugs)Sara Quote Link to comment Share on other sites More sharing options...
pat57 Posted July 16, 2011 Report Share Posted July 16, 2011 I am very happy to see this also. How old is Kayber? Quote Link to comment Share on other sites More sharing options...
rmlyonsfamily Posted July 16, 2011 Author Report Share Posted July 16, 2011 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! Quote Link to comment Share on other sites More sharing options...
jekecana Posted July 16, 2011 Report Share Posted July 16, 2011 I'm glad you are there and they are watching her.> Have they decided on a pacemaker? I'm curious as to what they drew blood for during the PVCs? My 5yr old is constantly throwing PVCs when we are inpatient and no one has every checked into it. Quote Link to comment Share on other sites More sharing options...
rmlyonsfamily Posted July 17, 2011 Author Report Share Posted July 17, 2011 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! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted July 17, 2011 Report Share Posted July 17, 2011 Thank goodness! I hope he figures it out tomorrow. Quote Link to comment Share on other sites More sharing options...
enko Posted July 17, 2011 Report Share Posted July 17, 2011 That's a wonderful man! Good luck! Quote Link to comment Share on other sites More sharing options...
rmlyonsfamily Posted July 17, 2011 Author Report Share Posted July 17, 2011 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? Quote Link to comment Share on other sites More sharing options...
lieze Posted July 17, 2011 Report Share Posted July 17, 2011 I just found something interesting yesterday because the last two days I've been symptomatic with eating. I'm going to start a new post. This doesn't affect me all the time so that part is strange. It is also confusing because I think I am having an allergic reaction to food when it happens at times and I have myself narrowed down to such a small safe food list I don't have much to choose from but it's basically what caused my weight loss and my fear of food. Quote Link to comment Share on other sites More sharing options...
rmlyonsfamily Posted July 17, 2011 Author Report Share Posted July 17, 2011 Thanks. I will watch for it, lieze. Quote Link to comment Share on other sites More sharing options...
Connie Posted July 17, 2011 Report Share Posted July 17, 2011 My son had the same test at Duke and it took a little while but his system is really fast so the dye moved thru in 20 minutes. But of course you have to set up everything so I guess it took about 1 1/2 at the most for us. But we had the test done about 3 - 4 years ago. I remember the person doing the test telling me that my son's system was very fast.I hope things get better for everybody and Kayleigh stabilizes. Please keep us posted.I will be praying for you and your family.Hope Quote Link to comment Share on other sites More sharing options...
hilbiligrl Posted July 17, 2011 Report Share Posted July 17, 2011 Kabers momma:I've been following your post about our daughter.... as i was very sickly at her age as well. Also, we had a situation were my niece was born at 1 lb and 3 ozs...... she was in NICU for almost a year, had many failed surgeries and died several times but was shocked back..... in the end, doctors from the hospital and docs from another nicu at another local hospital were fighting over what to do next cuz niece had an illostomy bag (cant remember how to spell it)...... finally, my sister basically grabbed up her baby and drove 7 hours to vanderbilt... they done one surgery and she was fine ever since..... so i can relate... sorta..... i know that is off subject..... just know that you arent alone and even though some of us havent posted, like me, do know that we are thinking of you and your daughter, as well as praying...... when i cant pray, it is those prayers of others for me that gets me through..... at least, that's what i like to believe......keep your chin up!!!! You are doing a great job with all of this!!!hugs to you and your daughter!tennille Quote Link to comment Share on other sites More sharing options...
janiedelite Posted July 18, 2011 Report Share Posted July 18, 2011 Sounds like K is already in the midst of her test. When I did that test at Mayo, it took a full day (my stomach emptied really fast but the rest of my guts were quite slow). However, if you have severe emptying issues then it can take up to 3 days. But I would be scanned every 2 hours and could leave between tests. Hope she continues to get answers!Hugs to you... I'm glad you were able to get some rest in your own bed. I'm sure K relies on you more than anyone, and you have to be strong for her while ignoring your own fatigue and worry. It sounds to me like she has the best mom in the world! Quote Link to comment Share on other sites More sharing options...
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