Blech!
Yesterday, Shelbie had her Oncology appointment. He confirmed that she does indeed have Vasculitis. I predicted that a couple of posts ago. She has a lot of petechiae and purpura. She had huge patches of purpura on her arms, it was sort of frightening to see, even for us oldies in the cycle of low platelets.
The doctor thinks that the IVIG is just slamming her body with inflammation, even causing her veins to become inflammed. When this happens, the walls of the veins become leaky and blood escapes and pools under the skin. It should resolve over time but more than likely, this will be our new normal with each transfusion from now on. That's an awesome 'suck' factor but wait, it gets better.
We have to change up her pre-med list because now the Toradol we use during the transfusion is aggrevating the vasculitis so that has to be discontinued as well as Naproxen for the headache pain. That leaves us very few options and the only one that I will really consent to is the Emergency Room for IV Morphine. He said we could try narcotics but the last thing we need to deal with is an addiction to pain meds; I don't even want those kinds of drugs in my house. I declined the prescriptions so I guess we will just plan on an additional maybe two hospital trips starting 36 hours after transfusion.
The other problem is that the IVIG hasn't been working to knock down that Adenovirus she has had for a solid year now! I didn't realize how dangerous that virus is and there are only two treatments that offer any hope for killing it. One is IVIG and the other is an IV medication given a couple times a week for a few weeks. He wanted to start it in a couple of weeks but the side effects are worse than aseptic meningitis. He had a transplant patient last fall who contracted Adenovirus and the sent her to University of Utah for the IV treatment. I asked him how she did and if the treatment helped or worked. He hesitated then said, "Well, unfortunately, she passed away." UGH!!! Scary!!! There is also a little boy in the UK who has been clinging to life because the adenovirus is in his lungs. He's been on a ventilator etc. This does not sit well with me!
How do you choose between those two options? Shelbie decided to stick with the IVIG. The doctor is going to look into trying a different brand or running it at a different concentration but that means the transfusion will take up to 12 hours instead of 6 or 7.
We have started to schedule bone marrow biopsies the week that school gets out. I just want to get that done and out of the way. We are about 6 months late in getting it done! We are going to stay here instead of going back to Seattle. I just can't stand the thought of another 14 hour drive. Here, they all get a bed in the same room. It's so much easier on me to be able to have them together in one room rather than running back and forth down the hall to check on each one. Easier for them too.
Big SIGH!!! Why doesn't this surprise me? Who knew we could have high platelets but petechiae anyways? Her red count is low so hopefully as the inflammation goes down, her counts will recover. Onward....
The doctor thinks that the IVIG is just slamming her body with inflammation, even causing her veins to become inflammed. When this happens, the walls of the veins become leaky and blood escapes and pools under the skin. It should resolve over time but more than likely, this will be our new normal with each transfusion from now on. That's an awesome 'suck' factor but wait, it gets better.
We have to change up her pre-med list because now the Toradol we use during the transfusion is aggrevating the vasculitis so that has to be discontinued as well as Naproxen for the headache pain. That leaves us very few options and the only one that I will really consent to is the Emergency Room for IV Morphine. He said we could try narcotics but the last thing we need to deal with is an addiction to pain meds; I don't even want those kinds of drugs in my house. I declined the prescriptions so I guess we will just plan on an additional maybe two hospital trips starting 36 hours after transfusion.
The other problem is that the IVIG hasn't been working to knock down that Adenovirus she has had for a solid year now! I didn't realize how dangerous that virus is and there are only two treatments that offer any hope for killing it. One is IVIG and the other is an IV medication given a couple times a week for a few weeks. He wanted to start it in a couple of weeks but the side effects are worse than aseptic meningitis. He had a transplant patient last fall who contracted Adenovirus and the sent her to University of Utah for the IV treatment. I asked him how she did and if the treatment helped or worked. He hesitated then said, "Well, unfortunately, she passed away." UGH!!! Scary!!! There is also a little boy in the UK who has been clinging to life because the adenovirus is in his lungs. He's been on a ventilator etc. This does not sit well with me!
How do you choose between those two options? Shelbie decided to stick with the IVIG. The doctor is going to look into trying a different brand or running it at a different concentration but that means the transfusion will take up to 12 hours instead of 6 or 7.
We have started to schedule bone marrow biopsies the week that school gets out. I just want to get that done and out of the way. We are about 6 months late in getting it done! We are going to stay here instead of going back to Seattle. I just can't stand the thought of another 14 hour drive. Here, they all get a bed in the same room. It's so much easier on me to be able to have them together in one room rather than running back and forth down the hall to check on each one. Easier for them too.
Big SIGH!!! Why doesn't this surprise me? Who knew we could have high platelets but petechiae anyways? Her red count is low so hopefully as the inflammation goes down, her counts will recover. Onward....
I wish you health! Read more about Petechiae. This post is linked there.
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