I’ve been putting this off as long as I could. If I had my way I wouldn’t post it at all, but the whole point of this webpage is to post all the updates, not just the happy ones. So here it goes.
Since the day after her transplant they were giving her 3 more kepivance shots to keep fighting the mouth sores, but this time the reaction was much more severe. She isn’t eating at all, they have her on TPN, and she is having serious reactions ranging from feeling like she is sun burnt from head to toe. Compare this to the worst sun burn you’ve ever had and times it by 10. It brought her to tears. We were rotating out cold rags to cool her down. She also has a horrible sore throat, constantly throwing up, and was shaking uncontrollably. They finally were able to get everything under control and she has been able to rest a little. The reactions started to get really bad 2 nights ago, and they had her so drugged up yesterday that I saw small glimpses of her the whole day. She would open her eyes every once in a while. Also a couple of times during the day the medicine would wear off and she would start going through the same thing. Finally she had to constantly have ice packs on her hands. I felt them and they felt cold to me and she still felt like her hands were on fire. She compared it to putting your hands on a hot burner and just leaving your hands there. Then they would get her more medicine and she would be able to close her eyes again. That night was more of the same. I was up with her once and the nurses were switching out her ice bags constantly. I decided to spend the night so she wasn’t alone until her mom got there and then I went to work.
Last time I talked to her mom they had her on a drug she could give herself with the push of a button that she could push every ten minutes to control her pain. As far as I know that’s the only thing that’s letting her rest right now. I am going to be calling her in a few minutes to see how she’s doing. Now don’t get overly concerned about this. Yes it has been extremely difficult for me to see her go through this, but the doctors are continually telling me it is expected. Again that isn’t too comforting, but hopefully it will soon be over. I’m just hoping that she’s so drugged up that after this is all over she won’t remember it. She also does have a virus in her stomach but this also is expected. We are still confident and looking forward.
Also this Sunday is Fast Sunday. Please if it be at all possible remember her in your fast.
Thank you for your prayers. I know there are so many out there and we are reaping the blessings. Thank you.
Adam
i just wanted to say that im sorry that i have not kept in touch while i have been in colorado, its just been work work work, and there is only time for eatin and sleep. so im stayin up late to check my email and thought i would say hi. i hope things start going better for both of you. i will be home soon and would love to come see you guys, if they dont have me working 24-7 well i have to get some sleep, talk to you soon
It is almost too much to take in. I cannot begin to comprehend what she is experiencing. I share your hope that she does not remember what she is going through. There is one thing that I hear most often about Amber, that her spirit is indomitable.