7 Months, Masses found, Retina damage, J-G tube not working
Today (Saturday) marks seven months that Denise has been in the hospital.
Lots of things happened since the last post. Here's the rundown:
Thursday:
Ultrasound showed enlarged liver, enlarged spleen, two masses. CT scan will be performed in a couple days to find out what's going on. We're not worrying about these until we know there's something to worry about. Enzymes continue to be high, and this may possibly be a manifestation of the cocci again, or toxicity to the meds that fight the cocci. It's a "darned if you do, darned if you don't" situation. The silver lining is that *if* this is more Valley Fever infection, the dosage of the anti-fungal meds can still be increased. And I think that if the liver function is whacked out as a side effect of the anti-fungal meds, perhaps the meds can be decreased. Another liver test will be preformed next week. If the enzymes are still high, a liver biopsy may be on the horizon.
Opthalmology appointment showed that the right eye does have 20/20 vision, normal field of view. Left retina does have damage. Denise described vision through the left eye as being black with a spotlight that allows her to see. She had to scan lines on the eye chart in order to read. We rescheduled an appointment with a retina specialist.
Denise had a bit of pain at the site of her feeding tube today and yesterday. That's a new complaint. She also had a little bit of red around the insertion site of the PICC line. She was itching it, too. I wondered if a little bug crawled under there and bit her or something. But it's probably a bit of infection. Hopefully it's just at the surface, not far in along the PICC line. Also, we found that the covering for the PICC line hadn't been fully removed the last time it was changed, so it was not letting the PICC insertion site breather and was causing some irritation for her.
At night Denise & I got a neat surprise that was planned by some folks from my school. We were serenaded by a singing family. Valentine's day stretched out over a few more days for us!
Friday:
Back to the ophthalmologist. They took pictures of the insides of Denise's eyes. They show that there is permanent damage to Denise's right retina (but with new glasses, the vision is corrected nicely). The left retina shows inflammation (possibly infection... let's hope not the cocci). The ophtho people that visited Denise at USC didn't have the ability to take pictures while in Denise's ICU room, so there's nothing to compare today's pictures with. Could be damage that's getting better (Denise has indicated that she thinks her vision is better since USC), or it could be getting worse, or staying the same. So we'll have to take Denise back again in a couple weeks for another set of pictures. The waiting game has begun.
We had a care planning meeting with several people that are helping Denise. Reps from the medical group & the SNF doctor weren't able to attend, but we still were able to cover plenty of ground. We still don't know how long Denise will be in the SNF. She is progressing well in each of her therapy areas, though.
Today (Saturday):
We interviewed some people for care when Denise comes home. We'd appreciate your prayers for wisdom on this one, as everyone we talked to was qualified and seemed wonderful. We're looking for a good fit for our needs, but we don't entirely know what they'll be yet, nor when home care will start. I know that it's a bridge we'll have to wait to cross. We're just paving the road to that bridge, I guess.
The feeding tube stopped working today. No food is able to go in. It's possible that there's a clog. It's possible that the tube migrated, as it did at Huntington Hospital. It's not an emergency, so they're increasing Denise's IV fluids and even encouraging her to try eating more soft food by mouth (she even ate some pastrami sandwich). She's done well so far with keeping food down. Let's hope that continues. We have to get in to see a radiologist and have this fixed. We were told it couldn't get scheduled for today and chances were slim that we'd be able to be squeezed in tomorrow. Notice that it's a three-day weekend, so my guess is that Monday's out, too.
And through it all, Denise is still in good spirits.
Lots of things happened since the last post. Here's the rundown:
Thursday:
Ultrasound showed enlarged liver, enlarged spleen, two masses. CT scan will be performed in a couple days to find out what's going on. We're not worrying about these until we know there's something to worry about. Enzymes continue to be high, and this may possibly be a manifestation of the cocci again, or toxicity to the meds that fight the cocci. It's a "darned if you do, darned if you don't" situation. The silver lining is that *if* this is more Valley Fever infection, the dosage of the anti-fungal meds can still be increased. And I think that if the liver function is whacked out as a side effect of the anti-fungal meds, perhaps the meds can be decreased. Another liver test will be preformed next week. If the enzymes are still high, a liver biopsy may be on the horizon.
Opthalmology appointment showed that the right eye does have 20/20 vision, normal field of view. Left retina does have damage. Denise described vision through the left eye as being black with a spotlight that allows her to see. She had to scan lines on the eye chart in order to read. We rescheduled an appointment with a retina specialist.
Denise had a bit of pain at the site of her feeding tube today and yesterday. That's a new complaint. She also had a little bit of red around the insertion site of the PICC line. She was itching it, too. I wondered if a little bug crawled under there and bit her or something. But it's probably a bit of infection. Hopefully it's just at the surface, not far in along the PICC line. Also, we found that the covering for the PICC line hadn't been fully removed the last time it was changed, so it was not letting the PICC insertion site breather and was causing some irritation for her.
At night Denise & I got a neat surprise that was planned by some folks from my school. We were serenaded by a singing family. Valentine's day stretched out over a few more days for us!
Friday:
Back to the ophthalmologist. They took pictures of the insides of Denise's eyes. They show that there is permanent damage to Denise's right retina (but with new glasses, the vision is corrected nicely). The left retina shows inflammation (possibly infection... let's hope not the cocci). The ophtho people that visited Denise at USC didn't have the ability to take pictures while in Denise's ICU room, so there's nothing to compare today's pictures with. Could be damage that's getting better (Denise has indicated that she thinks her vision is better since USC), or it could be getting worse, or staying the same. So we'll have to take Denise back again in a couple weeks for another set of pictures. The waiting game has begun.
We had a care planning meeting with several people that are helping Denise. Reps from the medical group & the SNF doctor weren't able to attend, but we still were able to cover plenty of ground. We still don't know how long Denise will be in the SNF. She is progressing well in each of her therapy areas, though.
Today (Saturday):
We interviewed some people for care when Denise comes home. We'd appreciate your prayers for wisdom on this one, as everyone we talked to was qualified and seemed wonderful. We're looking for a good fit for our needs, but we don't entirely know what they'll be yet, nor when home care will start. I know that it's a bridge we'll have to wait to cross. We're just paving the road to that bridge, I guess.
The feeding tube stopped working today. No food is able to go in. It's possible that there's a clog. It's possible that the tube migrated, as it did at Huntington Hospital. It's not an emergency, so they're increasing Denise's IV fluids and even encouraging her to try eating more soft food by mouth (she even ate some pastrami sandwich). She's done well so far with keeping food down. Let's hope that continues. We have to get in to see a radiologist and have this fixed. We were told it couldn't get scheduled for today and chances were slim that we'd be able to be squeezed in tomorrow. Notice that it's a three-day weekend, so my guess is that Monday's out, too.
And through it all, Denise is still in good spirits.
posted by Phil and Denise Williams at 11:36 PM
1 Comments:
We're still praying for you and Denise, Phil. I guess it's time to take another deep breath and get ready for the next round, huh? Let Him lead you. And at the same time, I am truly sorry that you are still having to go through this! My heart goes out to you. Give hugs to Denise for me.
Love, Rachel
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