The veinous doppler ultra sound did show something

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...

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.

Can she just get a break?

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.

Rough night...

We were suposed to go on an appointment, this is one we have already canceled before, but yesterday Kiera was having an off day and then vomited.
Ove the night hours, Kiera was very agitated, so agitated she wriggeled herself right out of her brief! She then had a 9 minute seizure and finnaly fell asleep around 6am. I am hoping that this is not heading into something more and as of right now her lungs sound fine.
It seems that we might be teetering right now.... we will see how the rest of the night goes. Kiera's O2 has droprd down in the low 80's 2 times today which required oxygen, but her lungs are still sounding ok....

Very long seizures again...

Well it's not unexpected because we are decreasing one of her seizure meds but Kiera had a 31 minute GTC seizure on Sunday, the day before she had a very hard GTC that lasted 14 minutes. They are so strong I am surprised that she has not broke anything yet with them.

With lowering the Lyrica, she has lost a little weight. Kiera is now at 102 LBS. I think that she will continue to loose as we go off the lyrica but we are not alarmed, neither my husband or I were overweight in our young 20's.

We have brought in a Palliative care team to help with the future needs that Kiera might be facing. Kiera has restrictive lung disease on the right, secondary to neuromuscular scoliosis. As her curve progresses her lung capacity will diminish and Kiera may have more pain from her back. Surgery is always an option, but it's not for everyone. We will know more in December after her Ortho appointment as far as where her curve is.

We have been working to get Kiera back up into her stander but she is not a big fan :( I am not surprised though, it's been over 1 1/2 years since she was in her stander and there have been a lot of changes with her body since then.

We are also looking for a suitable bed for Kiera, the one she has just has not held up to the use that we need it too. The zipper has been fixed a number of times over the last 3 years, and the crank to go up and down and elevate her head, keep bending and the more it gets fixed, the weaker it is, so eventually that is going to break! Kiera needs her bath chair adapted again because of the curve on her spine has increased AND her wheelchair seat needs to be looked at or a new one made... I feel like it's a loosing battle with all of her equipment and bracing!!!!

We were supposed to see her dietitian today but I cancelled it, I am tired of having appointments 'just because it's time' today's appointment would have not changed anything, so why get Kiera up so early to shower, dress, fix her hair (all of which she does not care for) and drive through rush hour traffic for 25-30 minutes, just for a check-up? I just don't see it!

This Saturday is my birthday and I love my birthday ( I don't know why, I just do!) but this birthday I will be spending it at a funeral. I will be 3 1/2 to 4 hours away from Kiera, I hope that she will be okay over the weekend.

On a more up beat note, I bought Kiera real Cheerleaders pom-pon's, they are the color of our Football team the Vikings!!! I am so bad, I want to give them to her today, but her Birthday is not until October!!!!! I think I am going to have my husband hide them from ME so I don't 'accidentally put them in my car and somehow they end up at Kiera's home'!!!!!

Thank You!

For all of you that have made comments on this blog, thank you! I have to translate your comments most of the time, but your messages are very nice! :)

Wow, it's already been one year since Kiera's surgery

It's hard to believe that a year has gone by already since Kiera had her emergency surgery last July 4th.
I still remember how I felt when I was asked for my verbal consent to go ahead with emergency surgery. I also can remember what the drive home from up north was like and having the fear that we were not going to get there before something horrible would happen.
Her scar is still there, and issues around the surgery, but unrelated are still present....and always will be now. she was critical and had to be placed on a ventilator even before the surgery due to aspirating on the contrast the Doctors gave her. But Kiera's here, and has proven to be a very strong young woman.

Over the last few day's Kiera has been in one of her giggly moods which makes everyone around her very happy, love that!!!