Our weekend was busy but went well. Tom is super-happy to be home and is getting around pretty well. It didn't take long for our first mishap. Before Tom was even out of the car, the puppies jumped on him and scratched his arm. We took care of that pretty easily but once Tom was in the house, I picked up the dogs and took them to get their nails trimmed (one of those things I don't have time to do when Tom is in the hospital). Anyway, I guess it was also time for another round of shots because it cost me $133 to get out of there!
Tom has two antibiotics he receives via IV. They are given at 6 am and 6 pm. The first one is supposed to take about 75 minutes and the second one 30 minutes. We've discovered that the more room-temperature they are, the faster they run so I set the alarm for 2 am today to get up and take them out of the fridge. I think I'll go with 1 am tomorrow since it took the first one about 90 minutes to run. This weekend it didn't matter so much since I didn't have any place to be that early.
The Home Health RN came by at 6:45 am on Saturday to do the paperwork again. This is the same poor guy who comes every time Tom gets out of the hospital. He spends 5 minutes taking Tom's vitals and 45 minutes filling out paperwork. I told him to fill out everything but the dates and I would make copies for the next time.
Our second mishap occured yesterday when Tom wanted to go to the grocery store to get some stuff to make chili for dinner. When he got out of the car, he hit his leg on the car door. Not a big deal but since it is on his calf, it has been leaking lots of fluid. I told him since all of the fluid is in his tissue instead of his veins, that is what happens. He told me to hand him a nail and hammer and he would get rid of the rest of the fluid. We're still dressing the wounds from the hospital so there is a lot of cleaning and patching to do while the IV's are running.
Tom is taking lots of diuretics so he's up a lot. I really hope he will rest while I am at work today. I know he is lonely and bored so for those of you who are close, feel free to go by and visit (please forgive me for the shape of the carpet - it WILL be replaced someday!!).
My "Santa" sister is coming to town tonight and will be delivering Christmas gifts from Memphis! I thought about holding on to our presents and "re-gifting" them next year but, to be fair, we'll send her back home with them.
Tom has a follow-up appointment with his doctor on Friday. The antibiotics are scheduled to be done on Wednesday so hopefully he won't need another round. I'm really hoping to hear from UAB on the Denver Shunt decision this week now that the holidays are over.
Monday, January 9, 2012
Friday, January 6, 2012
GOING HOME TODAY
Tom just called and said they are going to let him go home today! I Trust You Jesus . . . Praise the Lord!
Yesterday Dr. Rutland had told us that he wanted Tom to stay on this new antibiotic for 10 days. They started it on New Years Day. If it was not approved for Tom to receive this medication at home, he would have to stay in the hospital 5 more days. Tom did not understand this part of the conversation yesterday so when I was re-stating it for Dr. Dunn this morning, Tom got VERY upset.
I came on into work and called our Blue Cross Social Worker - who is so wonderful - she said that the medication is very expensive, but they can most times find a way to get it at home. I had placed a call to our Rx company and was on-hold with them when Tom called to say they had the approvals.
Tom is in the process of moving from mad to glad.
Dr. Rutland probably won't be by until lunch time to do his piece of the discharge paperwork. Then the hospital staff has to do theirs so I'm sure it will be this evening sometime before we get home.
I'll probably not post again until later this weekend. It's usually very busy when Tom gets home.
Yesterday Dr. Rutland had told us that he wanted Tom to stay on this new antibiotic for 10 days. They started it on New Years Day. If it was not approved for Tom to receive this medication at home, he would have to stay in the hospital 5 more days. Tom did not understand this part of the conversation yesterday so when I was re-stating it for Dr. Dunn this morning, Tom got VERY upset.
I came on into work and called our Blue Cross Social Worker - who is so wonderful - she said that the medication is very expensive, but they can most times find a way to get it at home. I had placed a call to our Rx company and was on-hold with them when Tom called to say they had the approvals.
Tom is in the process of moving from mad to glad.
Dr. Rutland probably won't be by until lunch time to do his piece of the discharge paperwork. Then the hospital staff has to do theirs so I'm sure it will be this evening sometime before we get home.
I'll probably not post again until later this weekend. It's usually very busy when Tom gets home.
Wednesday, January 4, 2012
HOME ON THE HORIZON
Dr. Rutland actually said that Tom may get to go home in a couple of days. The key is that he remains stable (and nothing else goes wrong - my words, not Dr. Rutland's). His hematocrit is higher today, thanks to the blood he received last night. Everything else looks good and his ammonia level is 47. I'm hoping tomorrow might be the day but we'll have to wait and see. Tom is making plans for the weekend - mostly about stuff he wants to eat. These steriods really do a number on his appetite!
Thanks to all who have called, emailed and texted the past few days. I'm sorry for not responding to you all. Now that everyone is back at work, it's really busy. There is just not enough time to go through the story for everyone and get my work done. I'm working on some fun stuff and when I get started, I don't want to stop.
Our moods and attitudes have improved. Of course it helps when Tom is better and we both get some sleep. He slept most of the morning today. I'm going to try to get him out of the room tonight - just for a short walk. I think he needs to build his stamina. He thinks he pulled a muscle in his chest when he fell this past time so that's been giving him some pain. My sympathy reserves are running pretty low so he's not getting much from me. He asked the nurses to turn off the bed alarm last night - which they did. Even though Tom says he calls them when he's going to get up, he will not wait more than a nano-second for them to show up. I do understand this - but I am still worried. I told him if he fell again, I was not going to come and see him anymore. That didn't go over so well.
When I left yesterday morning, the hospital staff was complaining that their phone system was not working. I told them if they "fixed" my husband, the two of us could probably "fix" their phone system. Hopefully the team of folks working on the phone system is faster than the team working on the wireless Internet. It's kind of scary that we rely on it so much now. I could really get something done if it was working.
One of my devotions this morning talked about repeating the phrase "I Trust You Jesus". I have been saying that all day. I think it's going to be my motto for 2012. One of the gifts I receive from my mom each year is a new copy of Daily Guideposts. Since Tom and I haven't exchanged Christmas gifts with my family yet, I'm re-reading my 2011 Daily Guideposts - it's just as good the second time around! I hope you all will join me in Trusting Jesus this year - we're living examples of how He carries us through the really, really difficult "life interruptions". I was also looking through my prayer list for 2011, there are so many friends who have had it much harder - with losing family members or terminal illnesses. We do have much to be thankful for.
Thanks to all who have called, emailed and texted the past few days. I'm sorry for not responding to you all. Now that everyone is back at work, it's really busy. There is just not enough time to go through the story for everyone and get my work done. I'm working on some fun stuff and when I get started, I don't want to stop.
Our moods and attitudes have improved. Of course it helps when Tom is better and we both get some sleep. He slept most of the morning today. I'm going to try to get him out of the room tonight - just for a short walk. I think he needs to build his stamina. He thinks he pulled a muscle in his chest when he fell this past time so that's been giving him some pain. My sympathy reserves are running pretty low so he's not getting much from me. He asked the nurses to turn off the bed alarm last night - which they did. Even though Tom says he calls them when he's going to get up, he will not wait more than a nano-second for them to show up. I do understand this - but I am still worried. I told him if he fell again, I was not going to come and see him anymore. That didn't go over so well.
When I left yesterday morning, the hospital staff was complaining that their phone system was not working. I told them if they "fixed" my husband, the two of us could probably "fix" their phone system. Hopefully the team of folks working on the phone system is faster than the team working on the wireless Internet. It's kind of scary that we rely on it so much now. I could really get something done if it was working.
One of my devotions this morning talked about repeating the phrase "I Trust You Jesus". I have been saying that all day. I think it's going to be my motto for 2012. One of the gifts I receive from my mom each year is a new copy of Daily Guideposts. Since Tom and I haven't exchanged Christmas gifts with my family yet, I'm re-reading my 2011 Daily Guideposts - it's just as good the second time around! I hope you all will join me in Trusting Jesus this year - we're living examples of how He carries us through the really, really difficult "life interruptions". I was also looking through my prayer list for 2011, there are so many friends who have had it much harder - with losing family members or terminal illnesses. We do have much to be thankful for.
Tuesday, January 3, 2012
Ammonia level down to 43
Hard to believe! Tom is so much better today. Dr. Rutland didn't offer much of an explanation about the spiked ammonia level. I asked him if he would review the test results for the past week and see if there was a set that could be sent to UAB for them to evaluate. All of the tests have to be run in the same day and they don't run every test every day. The day Tom's ammonia level was so high they didn't run the liver enzymes so although that should have made a big pact on the list position, it can't be used.
Tom's kidneys are still doing great. Managing the fluid is going to continue to be a problem though and Tom will have to keep dealing with these hospital visits unless UAB decides to do the Denver Shunt procedure or something else happens. Not really what we wanted to hear but I'm hoping we can find a way to balance the meds and manage it somehow.
Out neighbors have come through for us again and will go over in the afternoons and let the pups out for some playtime. That will save me a trip home from work and back to the hospital which gives me an extra hour of time at work and/or with Tom. I've been making 2 - 3 trips per day which is really tiring.
Tom's hematocrit was low today so they are giving him 2 units of blood tonight. It takes quite a while to run so hopefully there are some good movies on TV for him to watch. There are still problems with the Internet access here. I'm typing this post on my iPhone.
That's about it for tonight. My thumbs are tired!
Tom's kidneys are still doing great. Managing the fluid is going to continue to be a problem though and Tom will have to keep dealing with these hospital visits unless UAB decides to do the Denver Shunt procedure or something else happens. Not really what we wanted to hear but I'm hoping we can find a way to balance the meds and manage it somehow.
Out neighbors have come through for us again and will go over in the afternoons and let the pups out for some playtime. That will save me a trip home from work and back to the hospital which gives me an extra hour of time at work and/or with Tom. I've been making 2 - 3 trips per day which is really tiring.
Tom's hematocrit was low today so they are giving him 2 units of blood tonight. It takes quite a while to run so hopefully there are some good movies on TV for him to watch. There are still problems with the Internet access here. I'm typing this post on my iPhone.
That's about it for tonight. My thumbs are tired!
Monday, January 2, 2012
Better again
Tom is more himself this afternoon. Still not as good as he should be but it's a lot less stressful for both of us. I was hoping we could take a nap today but every time I got settled, either Tom needed something or someone came in. I'm still trying to get out of here to go home tonight.
The nurse he has tonight is one we've had this trip so she knows what's going on and that will make it much better.
They keep increasing his ammonia medicine and he will get an extra dose early in the morning. He's already starting to refuse but I suggested they spread them out a little to make it easier for him. He hasn't been up at all today - I'm a little disappointd in that, but I know he's sore from all of the up and down last night.
Fortunately there have been no more tears today - I'm thankful for that!
I was looking up e normal ammonia level on the Internet and noticed that diuretics raise the ammonia level. They added. Third diuretic to the mix N I wonder how much that contributed to yesterday's train wreck. WebMD specifically mentioned one of the drugs Tom is on. Hopefully they can back down on those a little in a day or two. I think they've scheduled another full work up in the morning so we'll see what that shows.
I've finally made it home. On a mission to get to bed in an hour. Thank you Ll so much for your faithful prays. We are desperate for them right now.
Jeanne
The nurse he has tonight is one we've had this trip so she knows what's going on and that will make it much better.
They keep increasing his ammonia medicine and he will get an extra dose early in the morning. He's already starting to refuse but I suggested they spread them out a little to make it easier for him. He hasn't been up at all today - I'm a little disappointd in that, but I know he's sore from all of the up and down last night.
Fortunately there have been no more tears today - I'm thankful for that!
I was looking up e normal ammonia level on the Internet and noticed that diuretics raise the ammonia level. They added. Third diuretic to the mix N I wonder how much that contributed to yesterday's train wreck. WebMD specifically mentioned one of the drugs Tom is on. Hopefully they can back down on those a little in a day or two. I think they've scheduled another full work up in the morning so we'll see what that shows.
I've finally made it home. On a mission to get to bed in an hour. Thank you Ll so much for your faithful prays. We are desperate for them right now.
Jeanne
Tears
There were lots of tears last night. When I got back to the hospital (with the intention of leaving early for some much needed sleep), the nurse stopped me in the hall and told me Tom had slipped again! He didn't completely fall to the floor but she said it took four of them to get him back in bed. I asked why the bed alarm wasn't on, she said it was but the time they responded to it, Tom had already slipped. Now, Tom has basically been in the hospital bed for 12 days. He has gotten up with me a couple of times and it takes a good 15 minutes for him to get himself out of the bed - with my help!! I ask you, how long did it take for them to respond? Once I made it Tom's room, I sat on the bed and just cried!
The nurse said he didn't want to take his meds and kept telling them to "wait until Suzie gets here". I don't know who Suzie is but if that is who Tom is calling for when he is delirious, she needs to come on over and take care of him. I was at the hospital all night, Suzie never showed up.
I asked the nurse this morning for a print out of Toms blood test results. Here are his ammonia readings for the past few days:
Dec. 31: 54.8
Jan. 1: 185.7
Jan. 2: 75.7
How does that happen!? Tom is better today but obviously his ammonia level is still high. The report shows his billirubin is high also and the calcium, protein, and albumin are low but not "remarkably" low. His WBC is 10.6 so that's pretty close to normal. Tom got up every time he needed to use the bathroom last night. I think he got about 4 hours of sleep, I got 2. Hopefully the ammonia level will continue to come down today. A huge thanks to Thelma, the dog sitter, who responded to my panicked call at 7 pm last night and agreed to stay with the pups.
It was good to see Dr. Dunn back this morning. We are anxious to talk to Dr. Rutland tomorrow. I may also see who I might need to chat with regarding the bed alarm fiasco. I have asked the team today to set it on the middle sensivity setting so when he starts to sit up it will go off. I don't know why it hasn't always been like that.
Tom did not eat anything after breakfast yesterday. About 3:30 this morning he was hungry and proceeded to eat everything on yesterday's lunch tray, followed by everything on the dinner tray (yuck) and then was ready to order breakfast.
I've been home to take a quick shower and play with the pups. I'm headed back and will try to post again tonight if the wi-fi is working.
The nurse said he didn't want to take his meds and kept telling them to "wait until Suzie gets here". I don't know who Suzie is but if that is who Tom is calling for when he is delirious, she needs to come on over and take care of him. I was at the hospital all night, Suzie never showed up.
I asked the nurse this morning for a print out of Toms blood test results. Here are his ammonia readings for the past few days:
Dec. 31: 54.8
Jan. 1: 185.7
Jan. 2: 75.7
How does that happen!? Tom is better today but obviously his ammonia level is still high. The report shows his billirubin is high also and the calcium, protein, and albumin are low but not "remarkably" low. His WBC is 10.6 so that's pretty close to normal. Tom got up every time he needed to use the bathroom last night. I think he got about 4 hours of sleep, I got 2. Hopefully the ammonia level will continue to come down today. A huge thanks to Thelma, the dog sitter, who responded to my panicked call at 7 pm last night and agreed to stay with the pups.
It was good to see Dr. Dunn back this morning. We are anxious to talk to Dr. Rutland tomorrow. I may also see who I might need to chat with regarding the bed alarm fiasco. I have asked the team today to set it on the middle sensivity setting so when he starts to sit up it will go off. I don't know why it hasn't always been like that.
Tom did not eat anything after breakfast yesterday. About 3:30 this morning he was hungry and proceeded to eat everything on yesterday's lunch tray, followed by everything on the dinner tray (yuck) and then was ready to order breakfast.
I've been home to take a quick shower and play with the pups. I'm headed back and will try to post again tonight if the wi-fi is working.
Sunday, January 1, 2012
Happy New Year
We're trying hard to make this New Year's Day a good one but it's been tough. Tom's ammonia level is twice what it was two days ago so he is even more confused. I wish I could understand what is going on, even more, I wish the doctors could explain it but they can't.
Tom has a bladder infection so they are supposed to be giving him a new antibiotic for it. I was there for 5 hours and no one brought anything. I called for help twice and never got it. The second time I was struggling with Tom because he was trying to get up and I didn't think it was a good idea. Some how I was able to get him up on my own to use the bathroom (crying the whole time). From there we went for a short walk! When we got back, he got back in the bed and promptly fell asleep. I cleaned everything up, grabbed my stuff and left. I stopped his nurse on the way out and gave her his status. I asked a couple of questions about his meds (she didn't know the answers) and told her if she was lucky he would stay asleep and that I would be back later.
The PCP on-call is still covering for Dr. Rutland through tomorrow so we probably won't get back on track until Tuesday. Dr. Dunn is supposed to be back tomorrow. I'm going to take the blood test list required for UAB tonight to see if I can get them to run the required tests tomorrow. Tom's creatinine is up some more so maybe that will help him move up the list - but I don't think it will be enough because the levels are not that bad. Tom still has a lot of fluid but it was easier to tell that he's lost quite a bit when he stood up today.
All I know right now is something's gotta give.
Tom has a bladder infection so they are supposed to be giving him a new antibiotic for it. I was there for 5 hours and no one brought anything. I called for help twice and never got it. The second time I was struggling with Tom because he was trying to get up and I didn't think it was a good idea. Some how I was able to get him up on my own to use the bathroom (crying the whole time). From there we went for a short walk! When we got back, he got back in the bed and promptly fell asleep. I cleaned everything up, grabbed my stuff and left. I stopped his nurse on the way out and gave her his status. I asked a couple of questions about his meds (she didn't know the answers) and told her if she was lucky he would stay asleep and that I would be back later.
The PCP on-call is still covering for Dr. Rutland through tomorrow so we probably won't get back on track until Tuesday. Dr. Dunn is supposed to be back tomorrow. I'm going to take the blood test list required for UAB tonight to see if I can get them to run the required tests tomorrow. Tom's creatinine is up some more so maybe that will help him move up the list - but I don't think it will be enough because the levels are not that bad. Tom still has a lot of fluid but it was easier to tell that he's lost quite a bit when he stood up today.
All I know right now is something's gotta give.
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