6:18pm
I spoke to Jessica's pulmonary doctor this afternoon and am waiting for her to call in a prescription for prednisone and an antibiotic. The doctor said she wasn't able to call it in right then but said she would a little later - I have to say I'm not impressed that it's not 2 hours later and still no call. I've tried calling her back and only received her voice mail but I've left 2 messages... one because I found some prednisone here at the house and just need to know how much to give Jess and two... because I had realized that our dumb pharmacy closes really early on Saturdays and would need the doc to call in the script for the antibiotic to a different pharmacy.
Jessica is wheezing more heavily now and I am getting nervous. I HATE this feeling. Her breathing is different than yesterday morning... it's not as heavy but there is noise in between each inhale and exhale. I'm sure she will improve once she starts the prednisone - at least I hope she will.
Austin is very worried about her too. Of course I didn't tell him how worried I am but I did acknowledge his concern. She has only been "this" sick for two days. She has been coughing for a few days - although Jess said she thought it has been 3 weeks. It feels like 3 weeks!
8:30pm
So.... still no call from the pulmonary doc. She has usually been on top of this kind of thing so I'm shocked she hasn't called me back. I found Jessica's "Asthma action plan" and saw that she can take the Xopenex breathing treatments every 2 hours and the starting amount of Prednisone is 40mg. I do remember giving her that much so I went ahead and gave it to her at 7:00pm. I can't wait all night and I don't want to be having to give it to her in the middle of the night every night.
I had Karl and Brandon move the recliner into Jessica's bedroom. It's a pain to move but I know I'm going to be in there most of the night tonight so I need to be able to get some rest while I'm in there. I remember when we bought that chair - 4 1/2 years ago - it was when Jessica was having lung bleeds and was placed into home hospice. We put it into her room so that I could be there with her and I was - practically 24/7 for months until we started the morphine therapy and the lung bleeds ceased.
Jessica says that her tummy really hurts and that it felt better when she threw up this morning. She wishes that she could throw up and get it over with so that her tummy can feel better. She has been sipping on soda all day and I've been able to get her to eat a tiny bit of jello. She still isn''t taking in very much fluids tho and she says her head aches... she hasn't had her light on at all today except for when I needed to plug in her pulse-ox. She said that her heart felt like it was pounding really hard but when I checked it, she had a good steady beat, pulse was 78 and her O2 level was at 74%. All that is normal for her. I'm glad she wasn't having any PVCs.
I'm giving her morphine for pain but am worried about which of her other 4953847274 meds she should take and which she shouldn't. Should I give her the diurretics? She isn't taking in very much fluids and I don't want her to get dehydrated? She did not get them yesterday for this very reason but do I continue to hold them? Should I give her the Miralax? I don't want her to get constipated and risk her getting a bowel obstruction but again, I don't want her to get dehydrated. She isn't able to swallow her Carafate so she hasn't taken that for 2 days (it's supposed to be taken 3 times a day on an empty stomach to treat gastritis and ulcers). I have given her the Digoxin and Toporol for her heart function and 1/2 of her Xifaxan for her stomach.
Karl is sitting with her right now. I'm trying to decide whether to shower right now or not... chances are that as soon as I become unavailable, the doctor will call. I have several questions for her (see paragraph above) and I want to be able to talk to her myself. Or I could run to the local stop-n-rob for a diet coke... but then again, I'm sure to miss the call.
9:55pm
My mom called and we chatted for a little while. Then Karl realized that Brandon's Sunday clothese were still dirty and we got the laundry started. Jess needed to go to the bathroom and lashed out at both Karl and I twice. She practically snarled as she yelled. She's gotta be in a lot of pain to act like that - - and of course she is on Prednisone. Gosh I hate that stuff!
Still no call from the pulmonary doctor. *ggrrr*
Showing posts with label vent. Show all posts
Showing posts with label vent. Show all posts
Saturday, April 25, 2009
Tuesday, September 04, 2007
AUGGHHHHHHHHHH!!!!!!!!!
OUR INSURANCE COMPANY IS STILL DENYING JESSICA AS A DEPENDANT!!!!!
***banging my head against the wall***
I just got ANOTHER call from the oxygen supply place saying that the insurance company is denying that Jessica is a dependant saying that WE have not updated Jessica's student status. We took care of that 2 months ago!
I guess I will put that to the top of my list of idiots to call today. I'm up to 6.
One last thing... Is the name Evelyn a man's name?
***banging my head against the wall***
I just got ANOTHER call from the oxygen supply place saying that the insurance company is denying that Jessica is a dependant saying that WE have not updated Jessica's student status. We took care of that 2 months ago!
I guess I will put that to the top of my list of idiots to call today. I'm up to 6.
One last thing... Is the name Evelyn a man's name?
Thursday, August 02, 2007
Woe is me....
As if life in the South Western desert isn't hard enough during monsoon season where it is NOT a "dry heat" but a very muggy, thunderstormy and allergy-inducing type heat.... my computer thought it would give me troubles and died. For about a week now I've been patiently using my oldest son's computer to check email from time to time. I didn't have any of my favorite websites bookmarked, nor my email addresses saved.... but I was able to download AIM and chat with two people. We found out that our hard-drive died so we bought a larger one and took it to the "computer hospital". The people said that they were able to retrieve all the information from the hard drive. FOR JOY! But this evening when Karl brought our baby home and started her up.... most of the information that I was hoping to find is actually GONE. It seems as though anything that was saved in word doc form is lost. Other things are gone too... I have tons of shortcuts that were copied from the old hard drive but they don't go anywhere. I have done searches to find specific files or documents and they come up with just empty shortcuts. I will call the company tomorrow and find out what is going on but so much stuff is just.... GONE.
saved emails: GONE
email addresses: GONE
favorite websites: GONE
saved files for CM business: GONE
saved passwords: GONE
Photos: as far as I can tell... SAVED!!!!!!!!!! Of course these would be the only things that I had recently backed up. haha!
Moral of the story: If you want it... back it up.
If you back it up then when your computer crashes, they will be able to save it from your old puter. If you didn't back it up then of course those will be the files that will be forever lost.
Back to the weather... we have had more rain here than usual.... in fact, we have moss growing in our yard. MOSS!!! Very weird here in the desert! The ground is so saturated that when it rains the water just runs. We have flash flood watches daily
I don't mind the rain... but apparently my body does. My allergies have really been giving me problems and then to top it off, my fibromyalgia is really flaring up. I hurt so bad, am so swollen and am exhausted. I went to my doctor last week and he put me on prednisone for the allergies (extreme itching and rashes). I was to take the steroids for 5 days so I did. I had the typical side effects: feeling jittery, not able to sleep, excessive sweating (but with this weather, who can tell?!) irritability... Today is the 2nd day after stopping the meds and I'm already starting to itch again. I'm so exhausted from not sleeping well during the predsnisone days that I'm overly tired and to top it off.... every muscle in my body hurts. I've never felt like this before... it's as though every muscle is inflamed and in pain. For instance, my arms are achy but when I leaned against a wall, pain shot through the area that touched the wall. I need to call my doc tomorrow. I wonder if this could be a side effect from the prednisone or if the fibromyalgia is really getting bad right now? Every muscle is tender to the touch and feels inflamed.... (puffy?) even in my neck... hands, arms, body, hips, legs, face.... EVERY SINGLE one.
Please pray that I can get to feeling better. My kids need me to be able to care for them and school is starting up again in just 2 weeks. I can live without all my computer stuff even though it may make paying bills a bit harder, (and I'm so relieved that my photos are saved)... I am more worried about my health and being able to care for my family.
saved emails: GONE
email addresses: GONE
favorite websites: GONE
saved files for CM business: GONE
saved passwords: GONE
Photos: as far as I can tell... SAVED!!!!!!!!!! Of course these would be the only things that I had recently backed up. haha!
Moral of the story: If you want it... back it up.
If you back it up then when your computer crashes, they will be able to save it from your old puter. If you didn't back it up then of course those will be the files that will be forever lost.
Back to the weather... we have had more rain here than usual.... in fact, we have moss growing in our yard. MOSS!!! Very weird here in the desert! The ground is so saturated that when it rains the water just runs. We have flash flood watches daily
I don't mind the rain... but apparently my body does. My allergies have really been giving me problems and then to top it off, my fibromyalgia is really flaring up. I hurt so bad, am so swollen and am exhausted. I went to my doctor last week and he put me on prednisone for the allergies (extreme itching and rashes). I was to take the steroids for 5 days so I did. I had the typical side effects: feeling jittery, not able to sleep, excessive sweating (but with this weather, who can tell?!) irritability... Today is the 2nd day after stopping the meds and I'm already starting to itch again. I'm so exhausted from not sleeping well during the predsnisone days that I'm overly tired and to top it off.... every muscle in my body hurts. I've never felt like this before... it's as though every muscle is inflamed and in pain. For instance, my arms are achy but when I leaned against a wall, pain shot through the area that touched the wall. I need to call my doc tomorrow. I wonder if this could be a side effect from the prednisone or if the fibromyalgia is really getting bad right now? Every muscle is tender to the touch and feels inflamed.... (puffy?) even in my neck... hands, arms, body, hips, legs, face.... EVERY SINGLE one.
Please pray that I can get to feeling better. My kids need me to be able to care for them and school is starting up again in just 2 weeks. I can live without all my computer stuff even though it may make paying bills a bit harder, (and I'm so relieved that my photos are saved)... I am more worried about my health and being able to care for my family.
Monday, July 09, 2007
So little time, So much to write - of So little importance (rant involved - be warned)
OK, where to begin. Let's start off on the topic of juvenile delinquents. Is it the parent's fault? Lets look at the following events:
A couple of days ago Karl and I went to our localstop 'n rob convenient store. We got there just in time to miss seeing a bike get stolen. We were there but we weren't paying attention. I had picked up the mail as we were leaving our house and we were sitting on our car in front of the store when one of the clerks (we'll call him.... Greg - 'cuz that's his name) came and knocked on our window. He says, "Karl! Did you see that kid steal the other kid's bike?" NO. It happened right in front of us. *doh!* Anyway, it was decided that I would stay at the store and get the things we came for, Karl got a description of the kid and the bike and Karl drove the car to go find the stolen bike. We could see the boy crying who's bike had just gotten stolen. Karl didn't find the kid on the bike but he thought he did and almost jumped on the wrong guy. Shortly after Karl got back, the kids RETURNS TO THE STORE in an SUV and the clerk recognizes him. Apparently the kid didn't tell the people he was with that he had just stolen a bike and they just happened to stop by the store on their way out somewhere else. The police pulled into the parking lot just as the clerk is telling us that the kid who stole the bike (we'll call him Freddy - yup, that's his name - there's no protecting the criminals here!) is definitely in the SUV. Karl was about to go and talk to the people in the SUV when I motioned to him that the police were there. He went and told the cop where the suspect was. Apparently the cop knows Freddy all too well. He told us (after arresting Freddy) that he has arrested good 'ol Freddy many a time... as well as his mom. So Freddy confesses, the cop takes him (in the back of the patrol car) to go get the bike. By that time another officer is talking with us in the parking lot. (us being Karl, me, the victim, the victim's sister and now the victim's mom). The people that Freddy is with are his in-laws and of all things, they are copping attitudes TOWARDS US! - the victims and the people who are helping the victims. Puhleeze! We aren't going to be intimidated by a bunch of criminals ermm.... the people who originally denied that Freddy was in the SUV. Freddy is only about 12 or 13 years old... tops! I'm afraid he probably has a life-time of being a criminal. I feel bad for the dude - his mother is a crack-head and his in-laws (could be an older sibling's family?) are either criminals or at least don't care if he is doing anything wrong. But I felt really bad for the boy who's bike was stolen right in front of him. His mother said that his first bike was stolen right out of their garage and the garage door was closed! This new bike has been kept inside the house. This kid had only left his bike right outside the store doors for a moment when Freddy the Fredster took off on it. The owner took off after him and almost caught him! Greg kept telling us how fast that kid is. The clerks have given him permission to bring his bike inside the store from now on.
Another juvenile delinquent story:
This evening Karl and I went to KFC for dinner. As we were leaving we see 3 teenagers getting out of a car. They are wearing the "goth" garb, which is fine. They all have thick eyeliner - one which looks like tears. Fine. Their hair look funky. No problem. Piercings everywhere. Not a problem... it's their bodies, what do I care? But their language! "F" this, "F" that... more than every other word is "F" and they are talking very loud. I close my car door and notice that the back of on kid's shirt says, "I am the god of "F". HUH? I wonder where the mom is?! Oh wait... she is in the car, smoking her cigarette while waiting for the kids to get her some chicken. Ahh... well, if they are getting her some chicken then I guess it's ok for them to talk like that and wear a shirt with the "F" word spelled out in big bold letters. I was repulsed. As I said, I don't care if the kids wear the goth stuff, the chains, piercings, make up and wild hair. It's their business. But what I do care about is them polluting the air with their obscenities: both vocal and visual. I am trying to raise my children to love the Lord... not be the "god of "F". I was highly offended that someone would even use the word "God" and "F" in the same sentence much less print it on a t-shirt. Karl told me that there used to be laws against wearing stuff with vulgarities like that but not anymore. "Freedom of Speech". Well, I'm sure that's exactly what our founding fathers had in mind when they wrote about freedom of speech. I can tell you one thing. If any of my kids were to bring home a t-shirt that said that, it would go directly into the fireplace. We'd have a huge fire even if it were 110° outside. If a friend of one of my kids wanted to enter my house (or my car) wearing something like that I would say no way. Go home and change your shirt... and by the way, change your attitude while you are at it. I would definitely not be taking the little ... kid.... to KFC and listen to him (or her, I couldn't tell which it was) talk like that either. There have been a few times that a friend has been visiting and I've heard an undesired word come out of his mouth. I have told said friend that he isn't allowed to talk that way at our house. If he says it again, he has to go home. One kid didn't think he had to obey MY rules at MY house and he was sent home and wasn't allowed to come back until he changed his attitude. He came back with a much better attitude and if I ever told him not to do something again, he obeyed right away. Recently Karl and I saw that same kid at a local store and he came up to us and was very happy to see us again. (we moved away from that neighborhood 9 years ago) He asked how everyone was doing and he still had the utmost respect for us. I was very happy to see that he seems to be a nice young man.
And the last item on the agenda would fall under the heading: "You might be a redneck if". At least this one is not anywhere near the stupid stuff I wrote about above. This one is family related. Fortunately most of my family doesn't read my garble so I think I'm safe in writing this... after all, it is my youngest brother that says our family puts the FUNK in "Dysfunktional". lol Anyway, my niece got married last month, June 21, in CA on the beach. We weren't able to attend thefuneral wedding but my middle brother sent us some lovely pictures. Beautiful young bride and handsome groom. White sand, blue sky and ocean waves in the background. Cute ring bearer (niece's youngest brother), beautiful flower girls (sister's girls), nice wedding all around. My brother, the bride's father, sent me an email inviting us to the wedding. I wished we could have made it but Jessica is unable to travel and I just can't leave town with her not doing well. I sent an email to my brother telling him how much we wished we could make it and hoped he would understand why we couldn't. I didn't get a reply but I usually don't.... just one of those "man things" I guess. So today I get an announcement for my niece's wedding in the mail. Yes, the one who got married 3 weeks ago. I figured the announcement must have gotten delayed in the mail. Oh wait... there's a picture included. It's a picture OF THE WEDDING. Did I mention that on the announcement it says: couple is registered at Walmart. Is this a hint? hahahaha!!! Is it just me or is that a redneck thing to do? Karl and I had a good laugh over it. He said we should send them a picture of our wedding from 1985 and say that we are registered at Walmart too. ROFL... I bet my brother and SIL figured that since we weren't able to attend the wedding that we might like a picture of it and the announcement for a scrapbook but it was really funny the way it came across.
Hey, at least we got a laugh out of the whole thing.
[disclaimer: if you don't agree with anything I wrote then too bad. It's my blog and I'll write what I want to. haha! I have the power to delete unwanted remarks... mwuahahahaha!]
A couple of days ago Karl and I went to our local
Another juvenile delinquent story:
This evening Karl and I went to KFC for dinner. As we were leaving we see 3 teenagers getting out of a car. They are wearing the "goth" garb, which is fine. They all have thick eyeliner - one which looks like tears. Fine. Their hair look funky. No problem. Piercings everywhere. Not a problem... it's their bodies, what do I care? But their language! "F" this, "F" that... more than every other word is "F" and they are talking very loud. I close my car door and notice that the back of on kid's shirt says, "I am the god of "F". HUH? I wonder where the mom is?! Oh wait... she is in the car, smoking her cigarette while waiting for the kids to get her some chicken. Ahh... well, if they are getting her some chicken then I guess it's ok for them to talk like that and wear a shirt with the "F" word spelled out in big bold letters. I was repulsed. As I said, I don't care if the kids wear the goth stuff, the chains, piercings, make up and wild hair. It's their business. But what I do care about is them polluting the air with their obscenities: both vocal and visual. I am trying to raise my children to love the Lord... not be the "god of "F". I was highly offended that someone would even use the word "God" and "F" in the same sentence much less print it on a t-shirt. Karl told me that there used to be laws against wearing stuff with vulgarities like that but not anymore. "Freedom of Speech". Well, I'm sure that's exactly what our founding fathers had in mind when they wrote about freedom of speech. I can tell you one thing. If any of my kids were to bring home a t-shirt that said that, it would go directly into the fireplace. We'd have a huge fire even if it were 110° outside. If a friend of one of my kids wanted to enter my house (or my car) wearing something like that I would say no way. Go home and change your shirt... and by the way, change your attitude while you are at it. I would definitely not be taking the little ... kid.... to KFC and listen to him (or her, I couldn't tell which it was) talk like that either. There have been a few times that a friend has been visiting and I've heard an undesired word come out of his mouth. I have told said friend that he isn't allowed to talk that way at our house. If he says it again, he has to go home. One kid didn't think he had to obey MY rules at MY house and he was sent home and wasn't allowed to come back until he changed his attitude. He came back with a much better attitude and if I ever told him not to do something again, he obeyed right away. Recently Karl and I saw that same kid at a local store and he came up to us and was very happy to see us again. (we moved away from that neighborhood 9 years ago) He asked how everyone was doing and he still had the utmost respect for us. I was very happy to see that he seems to be a nice young man.
And the last item on the agenda would fall under the heading: "You might be a redneck if". At least this one is not anywhere near the stupid stuff I wrote about above. This one is family related. Fortunately most of my family doesn't read my garble so I think I'm safe in writing this... after all, it is my youngest brother that says our family puts the FUNK in "Dysfunktional". lol Anyway, my niece got married last month, June 21, in CA on the beach. We weren't able to attend the
Hey, at least we got a laugh out of the whole thing.
[disclaimer: if you don't agree with anything I wrote then too bad. It's my blog and I'll write what I want to. haha! I have the power to delete unwanted remarks... mwuahahahaha!]
Sunday, May 06, 2007
Drug Addict Caught Red-Handed Stealing My Daughter's Morphine!
Just when you thought it was safe to read my blog something else happens. I can hardly believe it myself.
Here's the report I typed up and gave to the police officer when he came on Friday: (I've changed the name to protect the guilty... we'll just call her Miss Demeanor - lol)
Long story short - we caught one of Jessica's home health aide stealing Jessica's morphine while one duty! Not only was she stealing it but she was DRINKING IT AND FALLING ASLEEP! What the hell would have happened to Jess if she had a crisis and her crazy aide was drugged out and not able to help her? Pardon my language but I'm quite upset. I start fuming every time I think about it. The morphine not only helps Jessica with her pain but it is what is keeping her lungs from bleeding and it's keeping her from dying right now. I keep getting flash-backs of those horrible months when Jessica was having lung bleeds frequently. I would sit with her in her room almost 24/7. She would start coughing up blood at any time. She would gasp for air and cry... looking at me with her big eyes full of fear. At night she would cry - no, wail - "I'm not ready to die!". The doctors all told us that there was nothing more they could do (after a series of tests) and a hospice team came to our home. They were the ones who recommended Lorazapam for the anxiety and morphine for the pain. Nobody knew that the morphine would help prevent the lung bleeds but it has! It is her lifeline! Jessica has only had two or three significant lung bleeds in the last 2 years! We are so very thankful for that. We rely on the morphine to keep Jessica's lungs stable and to help relieve the pain. How dare that girl steal that from my daughter for her own addiction?
We caught her on video tape Thursday. I called the nursing agency and got her butt fired. I also called the cops and gave them a copy of our video tape as proof and I wrote a report of my suspicions of this gal and logged the morphine usage all week. We may have to go to court. What's interesting is that she could be arrested on two misdemeanors and not felonies as Karl and his other cop buddies thought. I'm not sure when the police are going to arrest her. The officer that came and took our report and evidence called back and told us that he is handing the case over to a detective. We have copies of the video tape, my report and the case number.
My sweet, innocent daughter has no idea what has been going on. She would be devastated if she knew that anybody was taking her medicine. She is so innocent that she can't imagine anybody doing anything bad... well, except that "bad guys" who daddy takes to jail and are more imaginary than real to her. We haven't even told our sons what happened. No use them getting upset and feeling violated like Karl and I do.
Thursday evening I watched the video only up until the aide committed the crime. By the way, she took 25+ cc all at one time. The most we ever give Jessica is 5 cc. The aide is skinnier than Jessica so it's not like she has a lot of weight to help absorb the drug! She really was blasted out of her mind - while both Karl and I were gone. At least Brandon (13) and Austin (11) were home. So after getting home from work Karl decides to watch the rest of the tape to see if there are any other incidences (there's not). As he was watching it he says, "A crime IS being committed! THOSE BOYS ARE EATING US OUT OF HOUSE AND HOME!" hahaha! The rest of the tape shows Brandon and Austin going into the kitchen multiple times and getting food to eat. I knew it!
We caught her on video tape Thursday. I called the nursing agency and got her butt fired. I also called the cops and gave them a copy of our video tape as proof and I wrote a report of my suspicions of this gal and logged the morphine usage all week. We may have to go to court. What's interesting is that she could be arrested on two misdemeanors and not felonies as Karl and his other cop buddies thought. I'm not sure when the police are going to arrest her. The officer that came and took our report and evidence called back and told us that he is handing the case over to a detective. We have copies of the video tape, my report and the case number.
My sweet, innocent daughter has no idea what has been going on. She would be devastated if she knew that anybody was taking her medicine. She is so innocent that she can't imagine anybody doing anything bad... well, except that "bad guys" who daddy takes to jail and are more imaginary than real to her. We haven't even told our sons what happened. No use them getting upset and feeling violated like Karl and I do.
Thursday evening I watched the video only up until the aide committed the crime. By the way, she took 25+ cc all at one time. The most we ever give Jessica is 5 cc. The aide is skinnier than Jessica so it's not like she has a lot of weight to help absorb the drug! She really was blasted out of her mind - while both Karl and I were gone. At least Brandon (13) and Austin (11) were home. So after getting home from work Karl decides to watch the rest of the tape to see if there are any other incidences (there's not). As he was watching it he says, "A crime IS being committed! THOSE BOYS ARE EATING US OUT OF HOUSE AND HOME!" hahaha! The rest of the tape shows Brandon and Austin going into the kitchen multiple times and getting food to eat. I knew it!
Here's the report I typed up and gave to the police officer when he came on Friday: (I've changed the name to protect the guilty... we'll just call her Miss Demeanor - lol)
Monday, April 30, 2007
I think someone has been getting into the morphine. I usually order one bottle that holds 500cc. I don't usually have to get a refill until more than 30 days later. Last time the pharmacy was 10 ccs short so we received 490ccs. I poured about 80 cc into a smaller morphine bottle - I take that bottle with me when I take Jess out somewhere just in case she needs a little bit. So that was around 90ccs less in that bottle than usual. We ran out of morphine sooner than normal. I thought about it and decided that it was because of the morphine I had taken from the bottle although it still seemed like I should have had more. I dismissed it and called the doctor’s office. The doctor has to hand write the prescription each time since it's a controlled substance. The doctor’s office told me that it was a little early to be ordering again; I told them what had happened and why we were ordering a little early. They said OK but that Jessica's primary care doctor was leaving the area and I need to get her into someone else ASAP because doctors don't like to write narcotics for other doctors.
Today when I was getting Jessica's morphine ready I noticed that we only had 100 ccs left! Out of 500 ccs we had only 100 left. I checked the bottle and sure enough, it has only been 10 days since I filled it. How could we have used 400 cc in 10 days?
I started doing the figures.
Jessica usually gets 5 ccs at 9:00pm, 5 cc at 10:00pm and between 2.5cc – 5 cc at 1 or 2am (if needed). So at the most, Jessica gets 15 cc a night. On rare occasions she will need 2.5cc – 5 cc during the day. In order for Jessica to have used 400 cc in 10 days, she would have had to take 40 cc a day. That’s much more than her normal 10 – 20 (max). I know full well that she has only had 10 cc most days. So she most likely has only taken 100cc – 140cc in 10 days. So where did the other 260cc or more go?
I got to thinking about it. We have a fairly new home health aide who’s been with us a few months. She works here on Mon, Thur and Sat. What's interesting is that I don't remember how much morphine was in the bottle on Sunday but apparently when I saw it today (Monday) it shocked me how low we were - almost as if there was a big difference between last night and today. The new girl, Miss Demeanor, worked today. I started remembering that several times Miss Demeanor has been so sleepy while at work that she could hardly keep her eyes open. In fact, she has fallen asleep. I have woken her up and she has claimed to only be resting, not sleeping.
I start a morhpine log:
Monday night: April 30:
morphine level at exactly 100cc
May 1, 2007 (Tuesday)
Karl and I set up a hidden camera after discussing it at length. I am very worried that more morphine will go missing and Jessica will be out. We have an appointment with a new primary care doctor on Thursday. I hope I am able to get a new prescription for morphine without any problems. I’m not sure if I will have to explain why Jess needs more morphine again so soon. We decide to only video tape during the time that Miss Demeanor is here since we don’t suspect any of the other aides. A different aide works today so we don’t record the video. I check on the morphine numerous times. No morphine goes missing.
Gave Jessica 5cc at 9:00pm
Gave Jessica 5 cc at 10:00pm
Morphine level at 90cc
Miss Demeanor does not work today so we do not record on video. I check the morphine numerous times throughout the day. No morphine goes missing.
Morphine log:
Gave Jessica 5cc at 9:00pm
Gave Jessica 5 cc at 10:00pm
Gave Jessica 2.5 cc at 2:00am
Morphine at about 77.50cc
May 3, 2007 (Thursday)
I take Jessica to see her new primary care doctor. Miss Demeanor is scheduled to work at 2:30pm. Karl starts the video recorder at about that time. Jessica and I get home at 2:54 and Miss Demeanor arrives at the same time.
On the video it shows that I make a phone call at 3:05. I call the pharmacy to see if they have enough morphine to fill the new prescription that the doctor had just written for me. The pharmacy asks what strength it is so I take out the white morphine bottle and read from it to the pharmacy. You can clearly see where I put the morphine bottle into the cupboard (the middle shelf) and it is a white bottle – the ONLY white bottle on that shelf. I then leave to go run errands and tell Jessica and Miss Demeanor that I will be gone for a few hours.
I came home after Miss Demeanor had left. I looked into the cupboard and the morphine bottle had been moved. I checked the morphine level right away and it was at about 50cc. I just stood there in shock! About 25 cc was missing! So I turned off the video tape recorder and took the player into my bedroom to see what had transpired.
Here is what I found:
At 3:49 Miss Demeanor turns off the lights in the kitchen. She then looks around, reaches into the cupboard and picks up the morphine bottle…. looks at it and puts it back. She then walks over to where the dining table light switch is and turns off the light over the dining table and looks into that room as she passes in front of the video camera. She comes back into the kitchen a few minutes later and at 3:52 prepares some food for Jessica.
At 3:53 after getting out some paper towels and placing the food into the microwave, Miss Demeanor takes the morphine out of the cupboard and pours it into something. She takes it into the hallway and lifts her arm and tilts her head back as she is walking away as if she is drinking it. (We have medicine cups that hold up to 30cc. We suspect that Miss Demeanor used that to pour the morphine into)
Later tonight Jessica tells me that she hopes that Miss Demeanor made it home ok. I ask her what she means by that and she said that Miss Demeanor’s eyes were bothering her. I asked her if Miss Demeanor was rubbing her eyes and Jessica says no. I asked her what Miss Demeanor was doing with her eyes and she shows me that her eyes are closed. Jessica tells me that Miss Demeanor said that her contacts are bothering her and she is keeping them wet by keeping her eyes closed. I asked Jessica if Miss Demeanor fell asleep and she said yes. Jessica started talking about her favorite show, Avatar. She said that Avatar comes on at 4:30. I asked her if Miss Demeanor was asleep when Avatar was on and she said yes. I tried to find out how long Miss Demeanor was asleep and Jessica didn’t know.
As you can see I have been so worried all week about the morphine. What if too much disappears and I can't get more for Jessica? What if the new doctor won't prescribe it for her so soon? What if the pharmacy won't fill it again so soon or if the insurance company won't cover it? What if Jess has to go through withdrawal and ends up in too much pain without it or the lung bleeds start again? What if we don't catch her (Miss Demeanor) in the act and we have to keep letting her come back into our house knowing she is most likely the one taking it? What if she finds the video camera? (Karl did an awesome job setting it up though!) Or worse... what if it is one of our own children taking it?
Other stresses have been what if we don't like the new primary care doctor? Fortunately he seems to be pretty good. We'll just have to see how he handles a crisis. I've also had to get ready for a CM workshop that I host and I haven't been feeling well. (Did I mention that we had the concrete poured for my craft room this week too?) And of course my sons have had scouts, school, reports, work, oldest son not putting the oil into the pick-up (that he uses) and it was dry, and a zillion other stresses that most households with 4 kids deal with on a daily basis.... including the teasing and crying and yelling. (that was for you, Mel) lol
Pray that my family and I are able to have a peaceful week!
Other stresses have been what if we don't like the new primary care doctor? Fortunately he seems to be pretty good. We'll just have to see how he handles a crisis. I've also had to get ready for a CM workshop that I host and I haven't been feeling well. (Did I mention that we had the concrete poured for my craft room this week too?) And of course my sons have had scouts, school, reports, work, oldest son not putting the oil into the pick-up (that he uses) and it was dry, and a zillion other stresses that most households with 4 kids deal with on a daily basis.... including the teasing and crying and yelling. (that was for you, Mel) lol
Pray that my family and I are able to have a peaceful week!
Tuesday, May 01, 2007
Off Day... and Prayer Request
Today was kind of .... interesting. I didn't get much sleep last night and had to get up earlier than normal to take Brandon to school. When I got home Jess got up and wasn't feeling well. I was able to get a nap in later but I've been having a few tummy issues today. So many things have come up and makes me wonder why people can't do their jobs right. I have a list of people I have to call tomorrow including SSI - they messed up Jessica's check this month. The credit union where we bank has messed up so I have to go in and get $25 back and have them change something on an account that we already went in to set up but the one lady didn't know that we had to sign a form. It is her job to know that. durrr.... some other things have come up but I won't go into details about all that.
Jessica's primary care doctor is leaving - which is fine by me since she "punted" us to urgent care when Jess was having a lung bleed recently. We were basically told that she couldn't be bothered with it. So anyway, Jess has an appointment with a new primary care doctor this Thursday. He is a friend of one of the pediatric cardiologists here and the peds cardiology nurse told me that a few of their teenage patients go to him. So... I'm really hoping that it works out! Please pray that this doctor is kind, compassionate and able to deal with such a medically involved patient as Jess... and who is willing to spend the time necessary to care for her many needs.
On a sad note, a friend of mine who lives in Ohio called me to tell me that her daughter is suffering from a brain bleed and isn't expected to live long. The daughter has a lot of medical issues and has been through so much. Please pray for this family and for the little girl. I don't want to mention names without their permission but I know that God knows who they are. I hope they are comforted and that the little girl doesn't suffer and enters God's arms peacefully.
I also wanted to add that we have met this little girl in person. Her, her parents and brother came here to our area last year so we invited them to come to our house. We spent a couple of hours together. We first met through an online support group for families with children with congenital heart defects. It's amazing how close we can get to someone that we've never met in person but this little girl we have met... and she will be missed.
Jessica's primary care doctor is leaving - which is fine by me since she "punted" us to urgent care when Jess was having a lung bleed recently. We were basically told that she couldn't be bothered with it. So anyway, Jess has an appointment with a new primary care doctor this Thursday. He is a friend of one of the pediatric cardiologists here and the peds cardiology nurse told me that a few of their teenage patients go to him. So... I'm really hoping that it works out! Please pray that this doctor is kind, compassionate and able to deal with such a medically involved patient as Jess... and who is willing to spend the time necessary to care for her many needs.
On a sad note, a friend of mine who lives in Ohio called me to tell me that her daughter is suffering from a brain bleed and isn't expected to live long. The daughter has a lot of medical issues and has been through so much. Please pray for this family and for the little girl. I don't want to mention names without their permission but I know that God knows who they are. I hope they are comforted and that the little girl doesn't suffer and enters God's arms peacefully.
I also wanted to add that we have met this little girl in person. Her, her parents and brother came here to our area last year so we invited them to come to our house. We spent a couple of hours together. We first met through an online support group for families with children with congenital heart defects. It's amazing how close we can get to someone that we've never met in person but this little girl we have met... and she will be missed.
Friday, January 26, 2007
I think I'm broken....
Or at least I've sprung a leak. I've been boo-hooing all day today. Could it be due the fact that I started a new anti-depressant and I may need a bit of a higher dose? Could it be due to lack of sleep and the stress of staying up late at night with Jess and then having to get up early to get my boys off to school... maybe because Karl has been in Phoenix (and working) so much and not here to help relieve a little of the stress? Maybe it's because my fibromyalgia is really acting up from the cold that we are not accustomed to and I'm dealing with a lot of pain... Maybe it could be that Jessica had a lung bleed Friday and all those fears have resurfaced or that she is having a lot of pain too. Or possibly because someone at the nursing agency has it in for us and has been causing all kinds of problems for the last few weeks and has been contacting Jessica's new case manager and trying to convince her that we are abusing the system and mis-using the services?
I got a call from the case manager today and she wants to have a meeting with me and the nurse supervisor from the nursing agency and see what services Jessica REALLY needs. She said something about "this has been going on a long time and I just walked into the middle of it" (huh?) and "maybe Jessica was a lot sicker when these services were set in place and she is doing better now". As soon as I started to talk to her I fell apart. Jessica is NOT getting better, if anything she is getting worse. I told her about the lung bleed she had on Friday and sobbed as I explained to her that there is nothing that can be done to help her. I quivered as I answered her question as to what is causing the bleeding - thousands of collaterals (blood vessels) that go from the aorta to the lungs that are bulging... waiting to burst and bleed into the lungs. We had thought that we had the bleeding under control with the morphine but now she is starting to have some bleeding and it could get bad really fast. She is having more pain and doesn't even feel well enough to have her hair washed most days. The case manager asked if she could get some type of blood clotting agent and I explained that Jessica could be having TIAs (tiny blood clots going to the brain) because her blood is already too thick due to lack of oxygen. No, we can't do anything that could make her blood even thicker. We are going to see a neuro-opthomologist next Thursday to see what he thinks. We also have to see the pulmonary doctor and cardiologist in next couple of weeks. We have so many appointments coming up that I just didn't know whether I was coming or going. I kept apologizing for crying the whole time - (I HATE that! I prefer to cry in private - if at all.) She finally said, "It seems like it's not a good time for us to get together so call me when you have time." *duh!* I don't think it's ever a good time for two outsiders to come in and gang up against me and see how many services they can take away! What good am I going to be to Jessica if I am so exhausted I'm in a coma or so stressed out that I'm in a straight-jacket in a padded cell? (ok, so I'm being a drama queen here, but hey, today it feels that bad)
The only service they are providing is for home health aids to come and care for Jess for a few hours a day. They help her have her bath, do her hair, help her dress, fix her food, remind her to take her meds (that I set out) and keep her company when I have to run errands like buy groceries or even have a nap. (oh, the abuse of the services - as if I'm out partying every day) Apparently someone (THE person - I won't name names) asked one of the aides if she does dishes and she said yes. OH NO! Call the police! They are only supposed to do Jessica's dishes - and only once a week, apparently. So now everyone is in a frenzy because a couple of aides want to be helpful. PUH-LEEZ.
I was back in my bedroom where hopefully, Jessica couldn't hear me sob. I tried to pull it all together because she needed me and after a few minutes the phone rang. It was the case manager again. Oh great, now what? Well, she sounded a bit compassionate this time. She said that she noticed that we are not receiving nursing services and they could provide that. I asked if she was offering a once a month scheduled visit or if I could call someone to come over and take a listen to Jessica's lungs and take her vitals if I thought she was getting into trouble. No. It would be a once a month visit. No thanks. I had to explain to her that we already went that route and it didn't seem to help. Last winter we had a nurse coming out once a month and 3 or 4 days after one of her visits Jessica was hospitalized with pneumonia. Jessica can get very sick very fast. The nurse wasn't able to pick up that she was getting sick. Also, I have a pulse-ox that I use to monitor her O2 sats and heartrate. She is having some PVCs but the cardiologist is aware of those and there's nothing they can do about it at this point. Again the tears start. I can see the PVCs on the pulse-ox and again, I didn't think that a nurse coming to take vitals once a month would really be beneficial but thank you anyway. I am up late at night with Jessica then up with my boys while she is still sleeping, so I catch naps any chance I get. We have so many appointments that having a nurse come was just one more appointment I had to be up for. Again I appologized for being so emotional. She responded that we are going through a lot and that it's natural for me to be overwhelmed and that I don't need to appologize. All of a sudden the phone went dead, the oxygen concentrator started beeping and the lights went out. GREAT. The power went out. (I know I paid the bill!) I went outside to get an oxygen tank to hook Jessica up to since her concentrator doesn't work without electricity. Wonderful... the tank is empty so I have to take the regulator off and put it onto a new one. It's windy and coooold! The wind was blowing right through me - pain! So while Jessica calls me from her bedroom that she is scared, I frantically hook up the oxygen and try to calm her down. Thank goodness for the princess light I got for her that runs on batteries! It was daytime but so cloudy that it was fairly dark inside the house.
Then the lights come on. yay. Then the phone rings. ugh! This time it's my neighbor who wants to know if my lights went off too. Good. I'm glad it's not someone who wants to yell at me and at least it's not just my house or my fault the power went off. After a few more tears talking to my friend (she is the one who's mom died from cancer a few months ago) I felt better knowing that she cares and is on my side. I decided to call the case manager back so she didn't think that I just hung up on her. I NEED her on my side. The case manager seemed concerned and apparently she had tried to call me right after the phone went dead. She was hoping that everything was ok. I explained to her that I was outside getting the oxygen ready for Jess. She didn't even think about my having to take care of oxygen needs with the power going out... maybe she will get a little bit of an understanding what is involved in caring for Miss Jess? I can only hope. She seemed to end on a fairly good note and said for me to just call her when things settle down a bit.
The power went on and off all afternoon. I used my land-phone to call the power company and apparently there was a lot of that going on due to the high winds. When Jessica's aide came we decided that Jess should not have her hair washed. What if her hair was wet and the power went off? She would freeze and get sooooo blue if we couldn't get her hair dried right away. There have been many times lately that Jess will get a bit chilled just by getting out of bed to go to the bathroom at night and she just shakes so badly... teeth chattering and body shaking uncontrollably - then she tells me that she hurts all over. We don't want her to get chilled! So I am going to have to help her wash it tomorrow. There's no aide scheduled until Monday - at least I hope they have filled that spot. Tuesday I get to go get my head drilled off - I have a badly cracked tooth and need a crown. Oh, the fun never ends.
I got a call from the case manager today and she wants to have a meeting with me and the nurse supervisor from the nursing agency and see what services Jessica REALLY needs. She said something about "this has been going on a long time and I just walked into the middle of it" (huh?) and "maybe Jessica was a lot sicker when these services were set in place and she is doing better now". As soon as I started to talk to her I fell apart. Jessica is NOT getting better, if anything she is getting worse. I told her about the lung bleed she had on Friday and sobbed as I explained to her that there is nothing that can be done to help her. I quivered as I answered her question as to what is causing the bleeding - thousands of collaterals (blood vessels) that go from the aorta to the lungs that are bulging... waiting to burst and bleed into the lungs. We had thought that we had the bleeding under control with the morphine but now she is starting to have some bleeding and it could get bad really fast. She is having more pain and doesn't even feel well enough to have her hair washed most days. The case manager asked if she could get some type of blood clotting agent and I explained that Jessica could be having TIAs (tiny blood clots going to the brain) because her blood is already too thick due to lack of oxygen. No, we can't do anything that could make her blood even thicker. We are going to see a neuro-opthomologist next Thursday to see what he thinks. We also have to see the pulmonary doctor and cardiologist in next couple of weeks. We have so many appointments coming up that I just didn't know whether I was coming or going. I kept apologizing for crying the whole time - (I HATE that! I prefer to cry in private - if at all.) She finally said, "It seems like it's not a good time for us to get together so call me when you have time." *duh!* I don't think it's ever a good time for two outsiders to come in and gang up against me and see how many services they can take away! What good am I going to be to Jessica if I am so exhausted I'm in a coma or so stressed out that I'm in a straight-jacket in a padded cell? (ok, so I'm being a drama queen here, but hey, today it feels that bad)
The only service they are providing is for home health aids to come and care for Jess for a few hours a day. They help her have her bath, do her hair, help her dress, fix her food, remind her to take her meds (that I set out) and keep her company when I have to run errands like buy groceries or even have a nap. (oh, the abuse of the services - as if I'm out partying every day) Apparently someone (THE person - I won't name names) asked one of the aides if she does dishes and she said yes. OH NO! Call the police! They are only supposed to do Jessica's dishes - and only once a week, apparently. So now everyone is in a frenzy because a couple of aides want to be helpful. PUH-LEEZ.
I was back in my bedroom where hopefully, Jessica couldn't hear me sob. I tried to pull it all together because she needed me and after a few minutes the phone rang. It was the case manager again. Oh great, now what? Well, she sounded a bit compassionate this time. She said that she noticed that we are not receiving nursing services and they could provide that. I asked if she was offering a once a month scheduled visit or if I could call someone to come over and take a listen to Jessica's lungs and take her vitals if I thought she was getting into trouble. No. It would be a once a month visit. No thanks. I had to explain to her that we already went that route and it didn't seem to help. Last winter we had a nurse coming out once a month and 3 or 4 days after one of her visits Jessica was hospitalized with pneumonia. Jessica can get very sick very fast. The nurse wasn't able to pick up that she was getting sick. Also, I have a pulse-ox that I use to monitor her O2 sats and heartrate. She is having some PVCs but the cardiologist is aware of those and there's nothing they can do about it at this point. Again the tears start. I can see the PVCs on the pulse-ox and again, I didn't think that a nurse coming to take vitals once a month would really be beneficial but thank you anyway. I am up late at night with Jessica then up with my boys while she is still sleeping, so I catch naps any chance I get. We have so many appointments that having a nurse come was just one more appointment I had to be up for. Again I appologized for being so emotional. She responded that we are going through a lot and that it's natural for me to be overwhelmed and that I don't need to appologize. All of a sudden the phone went dead, the oxygen concentrator started beeping and the lights went out. GREAT. The power went out. (I know I paid the bill!) I went outside to get an oxygen tank to hook Jessica up to since her concentrator doesn't work without electricity. Wonderful... the tank is empty so I have to take the regulator off and put it onto a new one. It's windy and coooold! The wind was blowing right through me - pain! So while Jessica calls me from her bedroom that she is scared, I frantically hook up the oxygen and try to calm her down. Thank goodness for the princess light I got for her that runs on batteries! It was daytime but so cloudy that it was fairly dark inside the house.
Then the lights come on. yay. Then the phone rings. ugh! This time it's my neighbor who wants to know if my lights went off too. Good. I'm glad it's not someone who wants to yell at me and at least it's not just my house or my fault the power went off. After a few more tears talking to my friend (she is the one who's mom died from cancer a few months ago) I felt better knowing that she cares and is on my side. I decided to call the case manager back so she didn't think that I just hung up on her. I NEED her on my side. The case manager seemed concerned and apparently she had tried to call me right after the phone went dead. She was hoping that everything was ok. I explained to her that I was outside getting the oxygen ready for Jess. She didn't even think about my having to take care of oxygen needs with the power going out... maybe she will get a little bit of an understanding what is involved in caring for Miss Jess? I can only hope. She seemed to end on a fairly good note and said for me to just call her when things settle down a bit.
The power went on and off all afternoon. I used my land-phone to call the power company and apparently there was a lot of that going on due to the high winds. When Jessica's aide came we decided that Jess should not have her hair washed. What if her hair was wet and the power went off? She would freeze and get sooooo blue if we couldn't get her hair dried right away. There have been many times lately that Jess will get a bit chilled just by getting out of bed to go to the bathroom at night and she just shakes so badly... teeth chattering and body shaking uncontrollably - then she tells me that she hurts all over. We don't want her to get chilled! So I am going to have to help her wash it tomorrow. There's no aide scheduled until Monday - at least I hope they have filled that spot. Tuesday I get to go get my head drilled off - I have a badly cracked tooth and need a crown. Oh, the fun never ends.
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