Sunday, August 26, 2007

Jessica's heart monitor results

I talked to the PC on Friday regarding the holter monitor results and they are not good. Dr. D is very concerned. He said that the last holter test done in 2004 showed 147 PVC's in 24 hour period. This time she had over 10,000 in 24 hours. That's a significant (HUGE!!!) difference. The PVC's are caused by her right ventricle getting more and more enlarged. The doctor said "her heart disease is progressing." He hummed and hawed for awhile and I knew what point he was avoiding... he finally came out and said, "I've known you for a long time and so I might as well say it... (and after more beating around the bush he said) it can be fatal." He said that normally he would treat the PVC's with a beta blocker, propanalol, but that can aggravate her asthma. (that's the exact same thing the pulmonary doctor told us on Monday). If Jessica's asthma acts up, the coughing can cause the lung bleeds to start up again. That has got to be the scariest and most horrible thing we have ever faced.... so far.

He said that he will talk to one of two other PC's who specialize in the electrical workings of the heart and see if they have any other ideas. One of those doctors is one that we've known for many years (he was a resident at the hospital when Jessica was a baby. He left and did the rest of his schooling, etc, and came back a few years ago as a PC. He remembers Jessica well and said that they used to call her a "frequent flyer". lol) Dr. D will be out of town doing clinics until Wed afternoon and that's when he will be able to talk to the other doctors.
Dr. D asked if Jess was on any type of stimulant and no, she isn't. I read him the list of meds she was on and then mentioned that the pulmonary doctor had taken Jessica off caffeine. He didn't know if that would cause Jess to have more PVC's but we decided to do another holter monitor this coming week to see for sure if that had anything to do with the increase in PVC's. Dr D also mentioned that another possibility is to do a pacemaker with defibrillator but of course that would require surgery. I really don't know a whole lot about that and I know that type of surgery is very minor compared to what Jessica has been through... but it will take a lot of thought, research and prayer to decide whether to do it or not. Jessica has repeatedly asked to never have another surgery. She is terminal - there is nothing more than can be done to fix her heart and she isn't a candidate for transplant.
I worry about talking to her about it because she has so much anxiety as it is. She can't fully understand what is going on with her heart so she isn't capable of making that type of decision. She does know that her heart is getting worse. She tells people, "every year my heart gets sicker". She is all too aware that she can't do things that she used to be able to do and when she was having the lung bleeds she knew she could die from them. She would be crying until about 4am saying that she doesn't want to die. She has always had separation anxiety but it's been heightened 100xs by going through that.

Jessica has not been complaining of the PVC's nearly as much since she did the holter test. Either the little bit of caffeine was causing a lot of PVC's or she is more calm because she knows she is being taken care of. She has not even asked me what the monitor said. She is comforted knowing that we did it and that Dr. D is taking care of her.

My heart is heavy trying to cope with this news. Jessica has had heart monitors before and they have always come back ok. I was not prepared for this news. Dr. D is concerned about the sudden increase in the amount of PVC's. We saw him just over a month ago and she was doing well. Dr. D is retiring soon and we are to see a different PC starting in December. I chose Dr. K since he was the one who did Jessica's cath a few years ago and did an excellent job. He listened to Jessica and to us. We have known him for several years and I feel confident that he will do everything possible to help Jessica be as comfortable as possible.

Please keep Jessica, Karl and I in your prayers. We may have some tough choices ahead of us and we need God's guidance. We appreciate your kind words and love so very much.

I forgot to mention that other possible side effects of the beta blockers are deep depression and fatigue. Miss Jess already battles both of these.

Jessica's pulmonary doctor's visit

As I mentioned before, I took Jess to the pulmonary doctor on Monday. The pulmonary doctor felt that Jessica's lungs are doing quite well. Jess is on several asthma meds and they are doing a good job. yay! We discussed the morphine and Karl asked why it is preventing the lung bleeds. The doctor said that she honestly doesn't know but in other patients it has helped with hemoptysis (coughing up blood) but nobody knows exactly why. Possibly the morphine helps to relax the pulmonary arteries and lungs and therefore preventing the lung bleeds. Not many people have the exact same cardiac and pulmonary artery anatomy that Jessica does that are still alive so it has been challenging to know exactly how to help her. [hemoptysis can have many causes - for instance, my friend June has a son with cystic fibrosis and they have dealt with hemoptysis too] As we were talking with the doctor, Jessica's left leg started shaking. It does that from time to time and it looks like a tremor. This shaking lasts from 5 - 10 minutes usually is it bugs Jessica. We discussed what could be causing the tremors and we realized that it's always the left leg. The last (and worst) stroke causes paralysis on Jessica's left side and when Jessica is tired her left eye wanders more than when she is rested. Jessica had been up crying until 3am and then we had to get her up to go to the appointment byt 11:30am. So Jessica was overly tired and the leg tremors could possibly be residual effects from the stroke she had all those years go. The doctor asked us to try to see if there is a connection between her being tired and the leg tremors. Then the doctor asked what Jessica was drinking and it was her diet coke. Jess is only allowed one diet coke a day, she has to have it finished by 2pm (so it won't keep her awake at night) and some days she doesn't even have any. The doctor said that for someone with anxiety and sleep problems along with the tremors and heart arrhythmias should NOT have ANY caffeine. Poor Jessica started crying when we were driving back home. She loves her diet coke. We had discussed caffeine-free diet coke but the silly girl insists she loves her diet coke. We had 3 more diet coke bottles in the fridge and we told her that when they are gone - they are gone. We have come up with some alternatives to the diet coke and she has been off caffeine for 2 days now.

We talked to the doctor about the arrhythmias that Jessica has been experiencing and she said that if the peds cardiologists want to treat them with a beta-blocker, they need to contact her since they could potentially aggravate Jessica's asthma.

Wednesday, August 22, 2007

Update on Jessica's Possible PVC's

Thank you, everyone, for your comments and emails. I contacted two friends who are nurses (one is an online friend and the other is my next-door neighbor who is assists in heart surgeries) and both of these ladies felt that Jessica's heart rhythm wasn't urgent. I was still nervous but glad to know that it wasn't urgent and that we could wait until Monday.

I called our peds cardiologist Monday morning. (as we are getting ready to take Jessica in to see her pulmonary doctor - a regular follow-up appointment). I talked to the cardiologist, Dr. D, and he wanted to know if I felt she should go in for an EKG or if she was going back into her regular rhythm on her own? I felt that she was in rhythm more than not but as I was talking to him I put on the pulse-ox just to make sure. He could hear the beeps over the phone and he said she was having good strong, regular heartbeats and I agreed. He asked me if I thought she should have a holter monitor or an event monitor. I asked for a holter monitor because she has had so many "episodes" over the weekend I was pretty sure that it would show up on a holter monitor - and that we would get an answer much sooner. Dr. D is so cool... he went right upstairs and filled out the paperwork for the diagnostic clinic to call us to schedule the holter. Then he called to tell me to confirm that the paperwork was in and as we were talking, the diagnostic clinic called me to schedule the holter! That was FAST!

So we went to the hospital and got the holter monitor placed today. It will recored Jessica's heartbeats for 24 hours. I need to keep a log of when she complains of an "event" - what time it happens and what she is doing. I also need to log when she eats and sleeps, etc. The monitor automatically shuts off after 24 hours straight and then I can take it back to the hospital.

For those of you who may not know, an event monitor is similar to the holter except that it doesn't save the information unless you press a button. When you press the button, it saves something like the previous minute plus several minutes after the button is pressed. It will hold 3 recorded episodes and then you have to call it in and transmit it by phone. These monitors can be used for up to 30 days. I know that the doctor would contact me sooner if there was anything going on but I thought it would be best to have the holter monitor just in case her heartbeat is irregular even when she doesn't notice it.

So far she has said that her heart is beating hard 4 times. She is so funny.... she said it felt like a frog was leaping from one lily pad to another. I asked her if I was supposed to write all that in the log?! LOL Tonight two of the leads started to peel off so I helped her replace them. Of course I wrote that down on the log.

Hopefully we'll hear something within a few days.
I have much more I want to write but it's 2:35am and I have to help my boys get off to school in the morning. Maybe I can write more later tomorrow today.

Saturday, August 18, 2007

Jessica's PVC's???

Jessica has been complaining that her heart is racing. She complains about that from time to time and has for several years. In fact, on her 16th birthday she was on a heart monitor because of those types of events. Each time she's had the monitors, they come back with a few PVC's (premature ventricular contraction). As I understand it, that means that the ventricle (bottom half of the heart) contracts (squeezes) more often then the atrium (top half of the heart). This afternoon she woke me up from a nap telling me that her heart was racing and I felt her pulse in her neck. Actually, all I would have had to do is look at it because her artery on the right side pulsates with her heartbeat. Anyway, I felt a steady rhythm but not of a normal nature. So I went a hooked her up to the pulse-ox (machine that measures the amount of oxygen that is being saturated in the blood). The pulse-ox also has the heart rate on there. After a few minutes everything looked fine for her and I turned it off. She still complained of being jittery so I gave her a small dose of lorazapam. After awhile she seemed to be more relaxed.

Tonight we had some problems with the oxygen concentrator and Jess mentioned the heart racing again. I wondered if she was having some anxiety of us having to call the oxygen supply company for a new concentrator at midnight but I hooked her up to the monitor anyway. I saw what I had seen/felt earlier in the day. She had a steady beat that wasn't too fast but it was like a hard beat then followed quickly by a small beat... then a slight pause then the hard beat then followed quickly by a small beat. It kept going so I decided to get out my camera and take a video of the pulse-ox machine. I uploaded it to Youtube and here it is:

I'm not sure if these are PVC's or something else. Jessica's pediatric cardiologist has always said that PVC's are pretty common and don't need treatment unless the patient has a lot of them right in a row. If this shows what I think it does, it looks like treatment is in order. My biggest concern is that I've been told that the meds for PVC's have side effects (of course) and one of the side effects is fatigue. Jess is too tired to do much as it is and I would hate for her to sleep her life away. *sigh* I know... I may be getting ahead of myself.

My question for all your heart moms and dads or adults who are heart patients is: After watching the video, do you think this can wait until Monday or should I call the peds cardiologist sooner? You can hear Jessica talking to me in the background and she wasn't extremely uncomfortable. She said that it felt like her heart got a min-trampoline and was jumping on it... or a pogo stick.

She was able to fall asleep so I'm thinking that it can wait until Monday. It's 4am here Sat morning so I think I'll call after I get some sleep and at least see who is on call.

Thanks for any input!

Monday, August 13, 2007

Musical Monday

I thought I would post a fun Musical Monday post to lighten things up around here a little. This song is very popular with my kids and it has gotten stuck in my head many times.... so yes, I'm going to share that agony with YOU! hehe! Here are two fun versions of the song:


Misheard Numa Numa Lyrics
(be patient... there's more after the "words")

Saturday, August 11, 2007

Miss Jess..... and worries about death

This is not the easiest of subjects. I know that many of you may not be up to reading this post and that's ok.... but I do want to warn you that there are some good things in here as well as the difficult stuff, so if you skip it, you might miss out.

I don't write about a lot of the conversations that Jess and I have or some of the stuff that we deal with ... but then I got to thinking that maybe I should. Jess talks to me but who do I talk to? I talk to Karl about it sometimes but he gets emotional... afterall, it's his little girl too. So I thought I would bring it here. I have had to learn to be calm when we talk about these things. I don't mean that I am cold... I am very compassionate but I don't fall apart. I have wiped away tears and let Jess see that sometimes, but on occasion I fall apart later, either when I'm by myself or with Karl.... but usually after it's been building up for awhile.

Miss Jess has been having some rough nights. She has been emotional and having anxiety. Weird thing is that she shouldn't be PMSing so I can't blame it on that. She has been fixated on death though. She has been causally talking about what happens to a body after it's been dead for awhile. We talk briefly about that and then I will quickly bring up our beliefs about what happens to our spirit once we die. I talk about how beautiful heaven must be and how we won't have any pain. We talk about who we know who has died and that we will be able to see them again. We discuss about some of the kids that she has known who have died from either CHD or other illnesses. We talk about how they must be running and jumping, swinging and dancing as much as they want - things they couldn't do when they were sick and sometimes never had a chance to do here on earth. Sometimes she will even talk about famous people we would want to meet.... Jessica mostly brings up people like Moses or Noah. On occasion she will learn about a former president of the US or a queen of England from a long time ago and she will brighten up and say, "Hey! I can meet them when I go to heaven!" LOL. She LOVES the thought of meeting royalty. After all, she is at the level of a 6 - 8 yr old and what little girl doesn't want to meet - or even BE - a princess?!

Well, tonight she seemed to be doing ok but got up a few times. With her anxiety she picks... she picks her skin on her arms, face and her toenails. (she has many scars on her arms and face from picking sores) Our biggest concern is infection. She has no idea how easily and infection could go to her heart and she could get bacterial endocarditis. So I caught her picking her toenail and making it bleed (she could cause and ingrown toenail!). I was not happy and I scolded her. (I have to treat her with kid gloves most of the time.) I had had it. The last 3 nights in a row she had kept me up until after 3:30 am and I have someplace I need to go tomorrow. I'm tired of having to take naps during the day because I don't get much sleep at night and the last few posts here have been regarding my health... obviously I don't feel well as it is. Well... my scolding set her into tears. Big 'ol alligator tears. I had been chatting online with my sister and had to go care for her. *sigh* (this is the sister who's son has cancer and I haven't had a chance to talk to her lately)

Jess was crying and saying how sorry she was that she had picked her toes and she hoped I would forgive her. I apologized for snapping at her and I asked her if she would forgive me. She nodded her head yes. I told her that of course I forgive her. Then she started crying again and asked if Heavenly Father would forgive her too? I said of course He will. She started talking about how she just wanted to give Heavenly Father and Jesus big hugs and how she wished that they could come so that she could hug them. She also wanted to tell them that she was sorry... so we decided that she should pray to ask for forgiveness. She started out by asking for forgiveness and telling Heavenly Father that she loved him. She then asked Him to forgive everyone, even if they didn't say they were sorry, but to please forgive them anyway. She is crying through her whole prayer and I was watching her... (I know, shame on me for not closing my eyes) I just looked at her profile, tears coming from her closed eyes, arms folded, purple lips and nose as she lay in bed pleading to her Father in Heaven to forgive her. I saw such an innocent, beautiful, angelic child who wanted to be perfect in every way. She went on to bless her cousin Marcus and our next-door neighbor, Donna, that they would be able to fight their cancers and to please not let them die too soon. "I will really miss them and I love them", she pleaded. She must have told Heavenly Father at least 5 or 6 times in her prayer that she loved him and Jesus too.

After her prayer was over I told her that Aunt Karen said that Marcus was doing pretty well. Jess said that she wished that Marcus's cancer was gone! I agreed with her. Then she said that she hated that Donna's cancer was back. "What if she dies?" I told her that we would miss her but we will always love her. The tears started back up and she said that Donna is the best neighbor friend that she has ever had! I agreed but told her that even once somebody dies, our love for them doesn't stop and we carry their memories with us always. We started talking about my grandpa H who's chair is in Jessica's room. She says that she likes sitting in it because she can feel his spirit holding her. My grandpa died before Jess was born but she has seen pictures of him and we talk about him and my grandma. So we started talking about great-grandpa and great-grandma... I told her some great stories about them and then we talked about my other grandma T (who is still alive) and her brother (who died just a couple of years ago). We have video of when Jess was about 3 yrs old and we got to visit with my grandma T and Uncle Melvin and Aunt Ada. I told her stories of how Uncle Melvin would tease my grandma T. He always called her "sis". Jessica started to laugh at some of the stories. I told her some stories of times I spent with my grandma and grandpa H. Then we talked a bit about an adventure we are going to have on Tuesday. We have to have some electrical work done at our house in order to continue the work on enclosing the carport so the power will be shut off most of the day on Tuesday. The boys will start school that day so I will take Jess out to grandma and grandpa Jensen's house for the day. I told her that I have wonderful memories of spending time with my grandparents and now it's her turn to make her memories with her grandparents. She smiled and liked that idea. She was FINALLY calm. She said that maybe she just needed to get all that out. I think I have to agree. I guess she has been so worried about herself dying, her cousin dying and even our next-door neighbor (who's chances of surviving 2 more years are only 30% - but Jess doesn't know that)... Jess just needed to get all that anxiety out.

In fact, a few days ago, she has asked me several times if someone can die from ulcers. She knows that she has ulcers and that's why she has to take the carafate. I told her that no, people don't die from ulcers. She then asked me if people can die from coughing up blood. Now Jessica hasn't coughed up blood for a couple of months but sometimes she can feel and taste blood in her throat, so I'm sure she is scared. I said that it would have to be a LOT of blood for someone to die. She asked, "like a cup?" NO, more than that. Like a bowl? No, more than that. I put my arms out really wide and said, "at least THIS much blood". "Like a RIVER?" I smiled. Yes, like a river. She knows she has never coughed up THAT much blood... not like a river, so she seemed to be ok with that. At least for a couple of days.

So here I am, typing at almost 3:00am about my daughter who is such a little girl in so many ways... who at her age should be dating, going to college and planning her future... but instead is playing with barbies, dreaming of princes and princesses, and worried about dying. I wish I could take that last part away from her. I wish I could take it away from all children who have life-threatening illnesses. I wish us parents didn't have to worry and watch our children worry.... and miss out on many of the "normal" things in life, not to mention the medical stuff they go through.

But on the other hand.... the faith my daughter has is amazing. She was truly sent to me to teach me and inspire me. I have never prayed harder than when she was hurting or near death. I have seen miracles. Another thing that Jessica brought up as she was having her anxiety, was that there are so many bad things out there. I told her that they would not come in here (meaning our home). I asked her who it was that made her live when she almost died when she was three? "Father". Who was it who gave you your eyesight back when you were blind? "Father." Who gave you back your strength and helped you learn to walk and everything again when you were paralyzed? "Father" Now don't you think that your Father in Heaven can bless you and protect you now? She nodded. "Of course He can. We just need to have faith and not worry about all that bad stuff." I reminded her that Mommy and Daddy do everything possible to protect our children. I reminded her that Heavenly Father blessed her with parents who love her more than life itself. He blessed her with brothers and grandparents and aunts and uncles and cousins who love her too. He also blessed her that people all around the world know about her and pray for her all the time.

We are truly blessed. Even at 3:20 am and are not sure if we will ever get to sleep tonight. Jess just got up AGAIN. She was looking for her CD player. *sigh*

Is there an anesthesiologist in the house?




Friday, August 03, 2007

Update on me

Thank you for your comments on my last post. I am doing slightly better tonight. One of the meds that the doctor gave me is making me extremely sleepy - it's an anti-histamine for allergies - I think I'm going to ditch it. I can't function being so extremely exhausted. I called the office and they got back with me tonight saying that I need to be seen in the office tomorrow by the nurse practitioner - if I can't get in to see him then I will have to go to the ER. Yeah... right. Wait until tomorrow to go to the ER. I don't think so. LOL I'm going to see if I can get in to the office to see the NP and if not then I'll try to schedule for next week. My doctor is out of the office until Aug 8th. I am going to ask for a referral to see a rheumatologist and see if we can get on top of this fibro thing.

I called the computer place and they were able to help me retrieve my email addresses. wOOt! I am able to find the saved emails but it won't let me import them to outlook express and of course I can't open them... so I'm not sure what to do about that. Anybody?

My good buddy, Dan, helped me figure a couple of other annoying things out on my computer so yay for him! He may be AWOL on his blog but was there for me in my darkest moment (hey, email trouble is life-threatening! ---- I was threatening my children's lives... lol)

Thanks again for your loving support. I just might make it through this summer... but considering where I live and that we have at least 2 - 3 more months of it, that is still yet to be determined. And for those of you who live in the humid areas... I concede.... a dry heat is much better than a humid heat! Even if it does feel like an oven at times! My body just doesn't like the humidity AT ALL.

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.