Wednesday, March 30, 2011
Kiera had the VDU done last Thursday and the results are that she has thick blood and has many small blood clots in the small veins. That same nigh she started a medication called Coumadin, it's a blood thinner. It's also a very scary medication to be on. The Thrombosis (Blood clots) are also very scary as well. She has had 2 INR tests done to see how thin her blood is after taking the medication. The first test was 5 days after starting Coumadin and that one read 0.9. The goal is 1-2. I am waiting to hear what it read today and move from there. Prior to the veinous ultra sound, Kiera had a EKG to make sure that the right side of her heart was fine. The tech could not see the right side of the heart for some reason. I don't know why they could not view it but they "assumed' that the right side was normal. There was a note on the report saying (stage 1 distolic dysfunction) of course I looked that up and now have many more questions for her Doctor. How timely, Kiera's regular Doctor just called, he is back from vacation. He is taking Kiera off the Coumadin, he says it is too risky of a medication for Kiera to be on and the small blood clots that are in the small veins are not at risk of moving and getting into the heart, lungs, and brain....whewwww! We told him that the edema was a bit less now, but he said that the Coumadin should not have made any difference with that. So we are kind of back to square one as far as the edema and the more concerning issue with the right sided swelling with her arm turning purple. We were also told that in order to look at the right heart Kiera would have to go through a very invasive procedure that not many Doctors even do any more. I am guessing that the stage 1 distolic dysfunction may be caused from the tachycardia that Kiera has. Next step is to see the endocrinologist. I should have named her Mystery because she sure is...
at 3:27 PM
Wednesday, March 23, 2011
Tomorrow Kiera is going to have a test called a doppler ultrasound on her vains. We are hoping to find an answer for the extra edema on the right side. She has Genralized edema from an unknown cause but the localized edema is a bit worrisome.
at 3:45 PM
Monday, March 21, 2011
It's again been a while sence my last entry, there just seems to be something always going on.
For some reason Kiera's pain has been increasing over the last year without any answer. It breaks my heart that we can't take that away. She also has been dealing with a bad yeast infection that is also around the g and j sites. We have used everything imaginable to take care of this and some of the times the topicals work for a bit but it always comes back, she really does not go for more than a week without the rash....poor girl!
Kiera has also been having J-tube issues (when has she not!)which has brought her into the hospital only because we have to keep her hydrated and the only way to do that is to do an IV. We really believe that the placement of the new J was a failure and it's caused a lot of problems. We have been told that it would be highly unlikly to find a Doctor to re-do the surgery. That really leaves me wondering about the years to come... what would be the next step if we can no longer feed her via the J?
Latley, Kiera has been having more emesis episodes, they can be bad such as projectile vomiting. Today her tempature is up a bit, so we will see what will happen next.
Kiera has again developed edima again from an unknown cause, the other day as I was visiting her I noticed that her right arm/hand and leg/foot were much more pufffy than the left side. About 3 days prior to this we had an appointment with one of her Doctors who just about covers everything when we see him. At that appointment it was determend that Kiera should have another EKG to look specifically at the right side of her heart, well over the last year Kiera's curve in her spine has gone from 42 degrease to 65 degrease and the curve is to the right, with that I think that made it hard to see the right side of her heart. The left side looked fine so it was "assumed" that the right side was fine as well.... that does not set well with me. I had talked to Kiera's Doctor after the results were sent to him and told him about the new right side puffieness, He has now orderd a Doppler Ultrasound on her vains. That is not untel the 27th of this month so there must not have been a rush to get this done.
She did get her new bed and a fantastic new wheelchair. The bed is a Sleepsafe bed, it's wonderful and I think Kiera is very comfortable in it!
I would love to see her have many more happy, healthy days in the future... still hopping.
at 11:58 AM