Lumbar puncture, Speaking valve, Chair time, G-tube clot
Denise was off the ventilator a few more times today. You're not going to believe this, but they're aiming to have her on the vent for four hours, then off for two hours. They haven't worked up to this... she's just all of a sudden been doing it!
A speech therapist came by and put in a speaking valve for a while. It's a one-way check valve that allows air into the tracheostomy, then out through the vocal cords. She said "Hello," "I love you," and answered a bunch of questions for the therapists. After a while, her heart rate got into the 140s so they put took the valve out and hooked her back up on the 30% oxygen (no ventilator). Now get this... about an hour later, they got her out of bed and into a chair (still no vent)! It wasn't even a cardiac chair... it was just a high-back chair with armrests. She was moving her neck around because it felt good. Her heart rate was about 132 while sitting up in the chair. She found it harder to breathe after being in the chair about 45 minutes.
The lumbar puncture was done today. Specimens were sent out and we have to wait for the lab results. She's not been complaining of headaches and she was easily moving her neck. Apparently headaches & neck stiffness are things that come along with meningitis. So the fact that Denise isn't experiencing either is something I'm hanging onto as positive points.
About yesterday's bone scan, the nurse added some specifics that I hadn't heard before. Seems that there's some osteomyelitis (that'd be inflammation of the bone marrow & bone, for the rest of us) in the right pelvic region. She said that the doctor didn't seem overly concerned about it, perhaps because she's already been on the appropriate meds.
The downers today: Fevers seemed to spike a little higher (101.8). The gastrostomy tube clotted tonight. I don't know if that means that her blood is clotting & blocking the tube or if the food in the tube got crusty & blocked the tube. On the home front, Jacob's cough seems to have come back with a vengeance, and he's coughed so hard that he's thrown up. Coughing's only in the morning & the night. That part matches a cough that came with our neice that's been staying with us a few days. The puking doesn't match the neice, but does match Denise's pop. Yes, we're quite a nifty bunch of folks to be around right now. I'm probably off to the doctor again tomorrow to see what's up with Jacob.
Other stuff: The social worker at the hospital found out that in addition to Denise still being covered 100%, there's also no lifetime limit on her insurance. Whew! That news came yesterday. I was happy. Then I went to the mechanic to pick up our car and found out that there are some more repairs on the horizon (valve cover gasket, all four motor mounts). Our van needs work, too (power steering). Neither car is worth the cost of repairs. I thought, "Now what am I going to do?" Later that night when I checked email, someone told us that they'd like to *give* us their old car if we could use it (they must have figured we'd need one soon, having read the blog post where our car turned 200,000 miles). Can't beat the timing, huh? So I'm checking into that possibility. The sticky wicket is that they're in the San Francisco area and I'm in the Los Angeles area. Anybody able to make that kind of road trip?
A speech therapist came by and put in a speaking valve for a while. It's a one-way check valve that allows air into the tracheostomy, then out through the vocal cords. She said "Hello," "I love you," and answered a bunch of questions for the therapists. After a while, her heart rate got into the 140s so they put took the valve out and hooked her back up on the 30% oxygen (no ventilator). Now get this... about an hour later, they got her out of bed and into a chair (still no vent)! It wasn't even a cardiac chair... it was just a high-back chair with armrests. She was moving her neck around because it felt good. Her heart rate was about 132 while sitting up in the chair. She found it harder to breathe after being in the chair about 45 minutes.
The lumbar puncture was done today. Specimens were sent out and we have to wait for the lab results. She's not been complaining of headaches and she was easily moving her neck. Apparently headaches & neck stiffness are things that come along with meningitis. So the fact that Denise isn't experiencing either is something I'm hanging onto as positive points.
About yesterday's bone scan, the nurse added some specifics that I hadn't heard before. Seems that there's some osteomyelitis (that'd be inflammation of the bone marrow & bone, for the rest of us) in the right pelvic region. She said that the doctor didn't seem overly concerned about it, perhaps because she's already been on the appropriate meds.
The downers today: Fevers seemed to spike a little higher (101.8). The gastrostomy tube clotted tonight. I don't know if that means that her blood is clotting & blocking the tube or if the food in the tube got crusty & blocked the tube. On the home front, Jacob's cough seems to have come back with a vengeance, and he's coughed so hard that he's thrown up. Coughing's only in the morning & the night. That part matches a cough that came with our neice that's been staying with us a few days. The puking doesn't match the neice, but does match Denise's pop. Yes, we're quite a nifty bunch of folks to be around right now. I'm probably off to the doctor again tomorrow to see what's up with Jacob.
Other stuff: The social worker at the hospital found out that in addition to Denise still being covered 100%, there's also no lifetime limit on her insurance. Whew! That news came yesterday. I was happy. Then I went to the mechanic to pick up our car and found out that there are some more repairs on the horizon (valve cover gasket, all four motor mounts). Our van needs work, too (power steering). Neither car is worth the cost of repairs. I thought, "Now what am I going to do?" Later that night when I checked email, someone told us that they'd like to *give* us their old car if we could use it (they must have figured we'd need one soon, having read the blog post where our car turned 200,000 miles). Can't beat the timing, huh? So I'm checking into that possibility. The sticky wicket is that they're in the San Francisco area and I'm in the Los Angeles area. Anybody able to make that kind of road trip?
posted by Phil and Denise Williams at 11:58 PM
4 Comments:
Hey Phil, when you take Jacob to the doctor, have them check for asthma. My daughter was young when I had to go into the hospital for some major surgery. The day before I noticed a cough (she had never had) and sure enough...she developed "stress-induced" asthma. Just a thought...not that you need anything else to worry about. You all continue to be in our prayers.
Phil,
In two weeks we are going to be in the Sac area, and I could possibly be able to make that trip. We will be looking into opportunities to do so.
Rachel
Hi Phil, I just spoke to you in carline. Maybe you should sell both cars and just get one, like a mini-van or something practical. I know of two PCS families who are selling a car like this. I will at least talk to them and see if they are still for sale... Hope that's okay. In His Grace, Heather Ortlund (Ortygang @ AOL.COM).
I am not sure this will help but my Grandmother rents rooms in her home Its in Monrovia above Foothill She can be reached at (626)358-7032 and her name is Neda Walton...
Post a Comment
<< Home