Thought for the day:

I saw this on a bumper sticker tonight and thought... yeah, I totally get it!

Somedays it just doesn't pay.......

to chew my way out of the restraints.

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.

Snow Slideshow

I've added more snow pictures to the slideshow. If you click on a picture it will open up in a new window so you can see a larger size. If you would like to view all the pictures without having to wait for them, click "View All Images" right below the slideshow. Enjoy!

SNOW DAY!

Amazing! The snow is still here this morning! Not only that, but the kids got a SNOW DAY! I don't know of any other time there has been a snow day in Tucson! It's amazing, all the bridges and many roads are closed and for about an hour we didn't know where Justen and Brandon were. Justen had left to take Brandon to school and then we found out that the school was closed for the day. Karl went out to find the boys and couldn't get past one bridge that goes over a wash... eventually we found out that Justen took several detours to get around closed roads to get Brandon to school. When they realized the school was closed, they had to take more detours to get back home. Fortunatley they got home ok. Now Karl is off to work to help close more ramps on the highway. It's only 25° outside right now - our low was 23°. Pretty crazy for the desert!

Stay tuned, more snow pictures to come later on in the day!

Update on Miss Jess

First I wanted to thank so many of you who sent us emails, sent out good thoughts, prayed and/or wore Christmas socks for Jessica. It is working! Jessica only had two episodes of coughing up blood and the second time is was minimal. I took Jessica to her cousin's princess party and she enjoyed herself. She was concerned about getting too worn out so instead of helping her get into her princess dress, I just put it into the car. (The last time one of her cousins had a princess party Jessica got so worn out and short of breath just trying to get ready that we didn't go.) There were several little girls wearing princess dresses and after awhile Jessica decided that she wanted hers on. I helped her put it right over her clothes and that worked out great! All the girls got to do some crafts and Jessica made a princess bookmark. I forgot my camera but my sister got some great pictures. Hopefully I'll get some from her and then I can post some here. Jessica did get a headache and some other pain but we were able to manage it ok.

It's Snowing in Tucson Arizona!

Austin really enjoyed playing in the snow!




Jessica and Brandon in the snow... Jessica was trying to catch snowflakes on her tongue. Jessica said that today is the BEST DAY EVER! Jessica can't travel to the mountains to play in the snow due to her heart/lung problems - we tried it when she was 6 years old and we almost didn't make it off the mountain in time! It rarely snows here in Tucson so it was a special treat for her to be able to play in the snow.



This is Bill. Brandon made this snowman on the swing.

Look at how much snow has accumulated on Karl's patrol truck.


The palm tree's leaves are weighed down by the snow.


We've never had this much snow in Tucson before! Look at how much snow is on the tree.

Here we go again... had "that" talk with the doctors again

Jessica started coughing up blood this afternoon. She called me while I was out picking up Brandon from school. She was quite upset and of course I came home as soon as I could. I called her new primary care doctor who had her nurse call me back and tell me to take her to urgent care. They are short and she didn't have time to see Jess. I was quite concerned that she didn't even talk to me herself. :-( So anyway, I told them that I would call the pediatric cardiologist (PC) before taking her anywhere.

I called the peds cardiologist (PC) and he was concerned about Jessica and asked if I had called the pulmonary doctor yet. I said no and after a bit of a conversation he asked me if I would like him to call the pulmonary doc and I said sure! It took awhile for him to get ahold of the pulmonary doctor but after he did he called me back. First thing he asked was if Jessica was still involved with hospice. I said no, they discharged her over a year ago. Both he and the pulmonary doctor had thought that was the case but just wanted to check and make sure. He explained that with Jessica, we don't know what to expect. So many times when he has thought that Jessica was in trouble she has turned around and pulled through. On the other hand, Jess may not have a lung bleed for months and then all of a sudden she could have a major one and that would be "it". The question would be then, if something were to happen, would we want to be in the hospital or at home? Both the PC and pulmonary doc have parents who are in their 80's and have living wills. He goes on to say that many times people who are in hospice want to be at home but when the time comes for one reason or another decide to go to the hospital. They know that there's not anything that can be done at the hospital that can't be done at home, but they feel more comfortable being in the hospital. Now with Jessica, this could be a small lung bleed and she will be fine tomorrow or it could turn into something major. It's up to Karl and I as to what we want to do. Karl definately wants us to be at home but I'm not quite so sure. I reminded him that in Jessica's case we are not dealing with an 80 year old mentality, we are dealing with more like an 8 year old. He agreed. I said that I really think we should do what would be most comfortable for Jessica. By this time Jessica had stopped the hymoptysis (coughing up blood) and seemed to be in better spirits. The PC told me that he was going out of town tomorrow but it would only be for the day. Our pulmonary doctor is on call this weekend and knows that I may call if things get worse. The pulmonary doctor was the one who helped us get hooked up with hospice and has known Jessica for many years.

I feel comfortable keeping Jessica home and if things get worse I know I can call the pulmonary doctor. None of us feel it's a good idea to take Jessica to urgent care since she would only be exposed to other illnesses and they wouldn't be able to do anything for her. Jessica had multiple x-rays when she was having frequent lung bleeds in the past and it never showed any blood. They would need to do a ct-scan in order to see it.

So far Jessica is feeling fine with staying home. When she first started coughing up blood she wanted to go to the hospital but after it stopped she has been feeling more comfortable. She also feels better knowing that her two best doctors know what is going on with her and say that she is ok to stay home. My neice is having a princess birthday party tomorrow and I reminded her that if she is in the hospital she won't be able to go to the party. She had forgotten about the party and now has a reason to want to stay home. She said that she wants to take a bowl to the party just in case she coughs up blood at the party. I jokingly said of course, since Aunt Alice doesn't have any bowls in her whole house. lol. I remember when she was coughing up blood practically daily and it was just a way of life. I guess we may be facing that again.

Any good thoughts and prayers would be greatly appreciated.

Showing off our talents

Karl and I make a pretty good team! Good thing too, especially considering we've been married almost 22 years! (*gasp*! How did we get so old already? lol) Karl really enjoys woodworking and I enjoy decorative painting. Some of the things we do have patterns, like the Santa, decorative pieces on the shelves including the birdhouses, country girl doll, the door on the bear cabinet and other country painted items, but none of the furniture had any instructions at all. I had the pattern for the painting on the door of the bear cabinet and Karl made the cabinet to fit the door! Same thing with the bench with the pansies on it. We designed the decorative shelf with the hearts and pegs on it together. We had a picture of the bench and Karl made it to fit right on our small front porch. The only thing that Karl had a pattern for is the armoire. Here are just a few of the projects that we've done together.

What's so great about statcounter?

It's kind of fun to see how many people come to see my blog on a regular basis, how many people accidentally come accross it, what words people have searched and ended up finding me... but one of the most fun things that Jess and I like about the statcounter is the MAP! It's fun to look at the map and see where the visitors come from. Sometimes there are so many hits from different places that apparently each map can hold only so many so then there are two maps. Anyway, here are the two that I got off statcounter tonight.

Happy Birthday Angel

I want to take a moment to honor a dear, sweet little girl who has touched so many lives across the world.... Bethany Katrina Frances English. I got acquainted with Bethany's dad, Dan, before Bethany was even born. You see, Bethany was diagnosed in utero with complex congenital heart defects. Dan searched online for information and support to help him and his better half, Jo, deal with their daughter's serious heart defects. Dan was calling Bethany "bump" up until the time she was born. Bethany had several nicknames such as "Bethy" and "little moo". Apparently that is an endearing name in England. ;-)

After Bethany was born, not only did she have several heart defects but also other problems including malrotation of the intestines, stomach in the wrong place and neuroblastoma, a type of childhood cancer. Bethany underwent surgeries for the cancer, reattachment of the stomach and later on more surgeries for her many heart defects.

Bethy could always make me smile. Dan would write about her antics and the trouble she would get into but she usually got away with it since she had daddy wrapped around her little finger. There were a few times that I actually got to see her on Dan's webcam. Once we even did the voice thing with the webcam on the yahoo messenger and it was so sweet to hear her voice. She reminded me so much of Jessica when she was little. Same sweet voice and feminine mannerisms. Another way that Bethy reminded me of Jessica is that she was a miracle. She beat the odds so many times! I used to always say that Jess didn't let a little thing like having heart surgery and a stroke get her down. Bethy had a stroke when she was and infant too. I am still so amazed that Bethany not only survived the cancer, stroke and several serious surgeries, but that she loved life and lived it to it's fullest.

Sadly, Bethany passed away on Feb 21, 2005 following a very complicated heart surgery. Bethany had just turned 4 years old the previous month.


In October, a national UK magazine (Best Magazine) ran an article about Bethy in the form of an open letter, written by her mother, Jo. Unfortunately the website where you can read the article is down but I will try to find a way to post it so you can read it. Don't forget to have plenty of tissue on hand.

Happy Birthday Angel Bethany.
You are greatly loved and missed.

Update: If you would like to read Dan's tribute to his daughter click here: Happy Birthday My Sweet Angel Jo also has a message and pictures of Bethy on her blog: Happy Birthday Baby The magazine article can be found here: Jodie's true story

Finding Nature Amusing

Karl and Brandon were playing basketball outside today when they thought they saw a hawk flying overhead. Karl looks closer and realizes that it's actually a falcon and just as he and Brandon were talking about it, the falcon attacks smaller bird and knocks it to the ground. As the falcon flies lower to pick up the now dead bird, our cat, White Toes, pounces on the dead bird and runs off to the back yard with it. I knew nothing of what had happened and I happened to look out our sliding glass door that leads into the back yard just in time to see White Toes going past with a bird in his mouth. He seemed to have a little bounce in his steps as if he was very proud of himself. I thought, wow, "I guess White Toes has finally learned how to catch birds". Karl and Brandon then come into the house and tell me what just happened. They were laughing as it seemed that the falcon was kind of surprised that the cat ran off with his dinner. We started joking about it and decided that at least if White Toes can't catch his own birds then at least he knows how to steal them. LOL!

We went outside to see what White Toes would do with the dead bird. We found him underneath the trampoline and he seemed to be trying to play with it. Since it wasn't going to move any he decided that instead of playing with it, he might as well eat it. It was pretty funny watching him take a big bite of feathers and then try to spit them out. We had a good laugh over it. I know, sounds gross but it wasn't that bad. Maybe I'm used to it since the cat I had when I was groing up was good at catching birds. In fact, she would bring the bird to our back door and meow and meow until someone went out to tell her that she had done a good job... and only then would she take it somewhere to eat it.

Are we still living in the dark ages?

I didn't know some people were still living in the dark ages. Look at what I found when I searched for a google support group for congenital heart defects:

The real cause of heart defects.

"Newsgroups: alt.support.heart-defects
Date: Thu, 17 Aug 2006 21:33:50 -0500
Local: Thurs, Aug 17 2006 7:33 pm
Subject: The real cause of heart defects

The doctors want us to believe that heart defects are caused by some
sort of medical condition. They're wrong. They just tell us that
because they know they can get their greedy hands into out bank
accounts.

Heart defects are caused solely by demons. The heart is the symbol of
love, and it's proper functions are controlled by "God" or good
spirits, (whatever you believe in). A heart goes awry when an evil or
angry spirit invades it. People who do not share, do not spend their
life doing good, or who become too self centered are the ones whose
hearts are taken over by these evil demons. Once this demon enters
the heart, the damage begins. They start by blocking the flow of
blood, or damaging the hearts functions in other ways. This condition
worsens and eventually these demons take total control of the heart.
Soon, the persons body begins to deteriorate and fail. When the demon
takes complete control of the heart, the good spirits leave and the
demon is in control of this heart and the body it keeps alive.

There is no way that surgery does any good. The demons must be
removed by the heart owner. However, there are times it's too late.
The person no longer has control of their own body and the demons now
own the person. These people die. Those that still have some of the
good spirits are able to heal themselves. The surgeons do nothing, in
fact they often do more damage than good. Some people report feeling
better after heart surgery and this may be the case. However, the
better feelings are caused by the prayers these people receive from
friends and relatives during the surgical procedures, NOT by the
surgery itself.

The solution is preventative medicine. Be in control of your life,
live a life of love and these evil demons will not enter the body.
This is the only sure method to prevent heart defects.

Edwin"

I was tempted to email the writer and tell him he's an idiot but I figured... what's the point? I have better things to spend my time on than arguing with him. You know what they say, never argue with an idiot because those who are watching may not be able to tell the difference. lol.. I have no idea of this guy knows someone with heart problems or who he is. Is he even for real or just posted to a board to try and get people riled up? I don't see any responses to his post so if that was his intent, he failed. A friend of mine suggested that I blog about this so I decided I might as well.

I know there are many of us heart-parents who have had to deal with other people giving us poor advice about things they know nothing about. Some are trying to be helpful and others seem to be critical whether they intend to be or not. I have to tell you that in the 18+ years that I have been a heart-mom I have NEVER had anyone tell me that Jessica's heart defects were caused by demons. I have been told to "just have faith and not worry about it" far too many times by people who don't live with caring for a very sick child who cries out in pain, fear, loneliness... spent endless nights holding a child who struggles to breathe either because her body can't handle a fever so her breathing is compromised or her asthma is acting up or she has pneumonia for the umpteenth time.... held a child who is coughing up blood, is choking, gasping for air and crying out that she's not ready to die... sat by your child's hospital bed with her hooked up to all types of monitors, breathing machine and endless tubes and wires coming out of her everywhere and being told she is dying and to spend her last hours with her... then when she pulls through only to find out days later that she is blind and paralyzed. These are only some of the things I have lived through with my precious child that God entrusted to me. We had another rough night last night and a very emotional morning this morning. I swear, if anybody tells me to my face that her heart defects are caused by demons - today they will get a black eye! LOL!

I do, however, appreciate all of you who are supportive and lend a listening ear. What a blessing to me you all are!

Out of the mouths of babes...

I have debated whether to blog this or not but it's too darn cute/funny not to. The names of the guilty (or innocent) parties are being left out except fot mine and Jessica's. hehe... Let me preface this conversation by reminding you, the reader, that Jess is at the level (emotionally, socially, academically) of about an 8 year old.

Jessica's home health aide arrived today and Jessica decided to tell her about a young woman we know who is pregnant. Said young woman is still in her teens and unmarried.

Jessica announced "She had sex with a boy!"

Both the aide and I stood and looked each other in the eye, being shocked at her announcement and also trying not to laugh.

"And she did it the wrong way!" Jessica continued.

The aide and I couldn't contain ourselves any longer and we burst out laughing, both of us turning bright red. I'm standing there wondering what she meant by her last statement. I didn't know there was a right way or wrong way and wondered if I had been doing it wrong all these years. lol

So I asked Jess what she meant about doing it the wrong way and she said, "She isn't married." Big sigh of relief! The aide and I both are trying to control our laughter.

Then Jessica tells me that she needs my help in the bathroom and leaves. The aide told me that she was shocked by what Jessica had said since she didn't think that Jess knows anything about that stuff. I told her that Jess was quite confused when she found out her friend was pregnant and couldn't understand how that happened because her friend isn't married. As an answer I told her that her friend had sex with a boy. Then Jess asked me if sex meant kissing...

I hear a muttled voice from the bathroom, "I CAN HEAR YOU!!!" Then laughter.

Later Jess asked me, "Am I older than (friend)?"

Me, "Yes, you are."

Jess, "Have I always been older?"

She is still my little girl. :-D

What a week! And it's barely Tuesday? - No wait, it is now early Wednesday!

I knew this week was going to be a rough. Karl had to go to Phoenix for the week and I'm THE parent. Jessica is having a lot of pain and breathing issues tonight so I'm up with her and I will have to get up at 7:00am to get the boys off to school. Austin can walk to school because it is close enough but I have to drive Brandon. I took Jessica to our support group, Tu Nidito, yesterday evening and I guess it wore her out. It wore me out too! But it was worth it. Jess had such a good time and she hasn't been out of the house in quite awhile. I was up pretty late last night, had to get up and drive boys to school early this morning and just as I was about to walk out the door, Jessica got up. As a treat I brought home pancakes and bacon from McDonald's for her and she finally went back to sleep at about 10am... then I crawled back to bed and was woken up several times by the phone and finally it was time for me to go out to pick up kids from school, go grocery shopping while Jessica's aide was here and I pretty much over-did it myself. I had hurt my back - pulled a muscle - over the weekend and have been in pain. OUCH.

I thought I had gotten Jessica all settled into bed awhile ago and told her I needed to go have a hot shower to help my back feel better. Well, before I was able to have my shower she was at my door crying from pain. I helped her back to bed and gave her some morphine. It was time for her to have her carafate (for her gastritis and ulcers) so I gave it to her. (I just hope the meds don't cancel each other out. I didn't want to give her morphine on an empty stomach but the carafate has to be given on an empty stomach.) Then Jess started crying about how it's hard on her for daddy to be gone. I tried to cheer her up by telling her that daddy will be home in 3 days... but since it was after midnight we could consider today to be Wednesday so now daddy will be back in just 2 days! She didn't fall for that and wanted us to have a special prayer. She was just sobbing by this point. I said that we should also have a prayer to help her be calm. So she decided to say the prayer for her dad to be safe and wanted me to say a prayer for her. (I guess she wanted two separate prayers) I prayed that her heart would be filled with comfort and love... that she would be able to rest and feel better and that her pain would subside. After calming down and being comforted by the prayers she was coughing and asked for another breathing treatment. I thought it might be too soon since her last one and got her tucked into bed. I went and had my hot shower only to come out and hear her still doing some coughing and clearing her throat like she does when she is having some difficulty breathing. I gave her a breathing treatment and now since it has been over an hour since taking her carafate she is eating a bagel. Now she wants more to eat. lol... I told her one more snack and that's it. It's after 2:00am and I have to be up at 5. I have to take Brandon and Austin to doctor's appointments tomorrow afternoon (when Jessica's aide is here), then a new Creative Memories customer is coming over to look at a new digital storybook made through CM, and I have another group thing to go to in the evening. Calgon, take me away!!

My blog has a new look!

I finally bit the bullet and switched over to the beta blog. I couldn't figure out how to get my Cbox and statcounter over here but my buddy Dan ermmmm... someone who may want to remain nameless, helped me fix it up nicely. I just wanted to say Thank You to Dan, I mean anonymous stranger. Thanks to Jo too for her help in finding a nice template and smacking said stranger for me. hehe...

Especially for Dan

Funny