More on Jack.
Liver is back to normal. Which, unfortunately, doesn't explain his jaundice, loss of muscle control, or fluid in his abdomen, which advanced liver disease would have explained. His pancreatitis is improving, but is still active. We're looking at gall bladder involvement. He's getting ultrasounded at Angell on Tuesday, because now we're looking for a blockage or cancer.
The thing that gets to us is that his condition is so variable. Thursday morning, he was happy to see us and was talkative for the first time in a while; then he retched, lost muscle control, fell over and couldn't move and cried. Joy to heartbreak in three seconds flat. Friday we observed that he had a leaky butt. Yesterday he lost bladder and bowel control repeatedly on the (thankfully cheap and utterly replaceable IKEA) duvet, and then he started hiding, which he hadn't done yet. Which catapulted me into my first real breakdown of this whole thing.
We sequestered him in my office overnight so we could sleep without him peeing on us. When I went in to say hi this morning, he bounced right up and started talking to me like he used to every morning, and tried to get out of the room! The whole time he's been in my room, he hasn't tried to get out. Which is in itself a symptom.
If you'd asked me yesterday, I'd have told you he might not make it to his ultrasound on Tuesday. Last night was full of tears and anguish and serious talks about saying goodbye. Today he seems almost okay. I don't know. The not-knowing is doing me in. If I just had some way to know if he was fixable, I could prepare for whatever the answer is. As it is, I'm pre-grieving and then yelling at myself for doing so. So much emotional whiplash.
I've cancelled my trip to Florida. I was supposed to fly out tomorrow for a week. If we'd gotten definitive answers on Friday and gotten Jack started on a treatment that only takes one person to administer, I could've gone. We didn't, so I need to be here. Elayna is still going.
And now I must go continue to Do All The Things!
Liver is back to normal. Which, unfortunately, doesn't explain his jaundice, loss of muscle control, or fluid in his abdomen, which advanced liver disease would have explained. His pancreatitis is improving, but is still active. We're looking at gall bladder involvement. He's getting ultrasounded at Angell on Tuesday, because now we're looking for a blockage or cancer.
The thing that gets to us is that his condition is so variable. Thursday morning, he was happy to see us and was talkative for the first time in a while; then he retched, lost muscle control, fell over and couldn't move and cried. Joy to heartbreak in three seconds flat. Friday we observed that he had a leaky butt. Yesterday he lost bladder and bowel control repeatedly on the (thankfully cheap and utterly replaceable IKEA) duvet, and then he started hiding, which he hadn't done yet. Which catapulted me into my first real breakdown of this whole thing.
We sequestered him in my office overnight so we could sleep without him peeing on us. When I went in to say hi this morning, he bounced right up and started talking to me like he used to every morning, and tried to get out of the room! The whole time he's been in my room, he hasn't tried to get out. Which is in itself a symptom.
If you'd asked me yesterday, I'd have told you he might not make it to his ultrasound on Tuesday. Last night was full of tears and anguish and serious talks about saying goodbye. Today he seems almost okay. I don't know. The not-knowing is doing me in. If I just had some way to know if he was fixable, I could prepare for whatever the answer is. As it is, I'm pre-grieving and then yelling at myself for doing so. So much emotional whiplash.
I've cancelled my trip to Florida. I was supposed to fly out tomorrow for a week. If we'd gotten definitive answers on Friday and gotten Jack started on a treatment that only takes one person to administer, I could've gone. We didn't, so I need to be here. Elayna is still going.
And now I must go continue to Do All The Things!