Sunday, April 26, 2009

6 Months

I can't believe it's been 6 months since Marcus earned his wings. It feels like just yesterday since the pain is still so raw - in fact, most of the time my heart can't believe that he is really gone. It seems like just yesterday that he was here at my house, playing video games with my kids and hanging out with Jessica.

Here is one of my favorite pictures of Marcus and Jessica - the last time we would see Marcus while on this earth.

The following is a video that my sister, Karen, made to help with Childhood Brain Tumor Awareness. I've posted it below. *warning - you'll need a tissue!*

Photo and video editing at

I'm sure that to Karen, and her family, each day without him feels like an eternity.
My heart and prayers go out to her and her family. We love you so much!

Here is Marcus's Make A Wish trip story;
posted on the Make A Wish Foundation of Utah's blog.

Marcus, we love you and miss you terribly.
Thank you for watching over us - especially Jessica.
We are so proud of you too.

Love you forever,
Aunt Nancy

Saturday, April 25, 2009

Jessica is still very sick....

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!

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.

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*

Friday, April 24, 2009

Jessica is very sick - more prayers please.

Jessica has a fever today and is struggling to breathe. In fact, her breathing scared Austin. :*( She is sleeping and I'm keeping a close eye on her - giving her tylenol for the fever, etc.

Thank you all for your thoughts and prayers.

Quick update - prayer request

Jessica is not doing very well right now. Her pain level was WAAAAYYY up yesterday, even after a little extra morphine. She has been coughing and is congested. She is needed back-to-back breathing treatments at times. It is so hard to see her in so much pain. She has mentioned quite a few times lately that she wishes she could be in Heaven with Marcus so she could be out of her painful body. I keep telling her that it's OK to feel that way and that when the time comes, it's OK for her to go. We also talk about "enduring to the end". *sigh* So many mixed emotions here. I love every single hug and kiss and smile she gives me (and there are plenty every day!) and I know I am going to miss that.... but I don't want her to be in pain anymore. She's my baby and I love her so much. I would gladly trade places with her if I could but of course I can't. She has a special mission to do and only she can do it. I have been by her side every step of the way and I'm not giving up now... I just wish there were more I could do.

We appreciate all the prayers and love that you share with us. It's so good to know that we are not going through this alone.

Sunday, April 12, 2009

Happy Easter - my thoughts today

I am so thankful for this day - a day to remember that not only did Christ die on the cross for us, but that he gave us the gift of resurrection. One day my daughter will have a body that will not fail her. She will run and play and dance to her heart's content. She won't need oxygen or even glasses (but she says she may want to wear glasses just to look pretty! lol). Of course I can't help but think of my dear nephew, Marcus, too. Jessica dreams of him every night and misses him so much. She is longing to spend time with him and be free of her daily pains.... but she still loves life and her family. We spent time with our Jensen grandparents last night and it was wonderful having them here. I'll post more about that later - including a few pictures.

The following is a wonderful slide show called Reflections of Christ. I felt it was perfect for this day: Easter. The promise of new life. I love this day.

May you find comfort and peace in the message Christ brings. I sure do.

Saturday, April 11, 2009

Jessica's GI appointment: caution... poop mentioned

Jessica had an appointment with the peds GI doctor this last week. Jessica's retired Peds Cardiologist, Dr. D., (who diagnosed her at the age of 2 weeks and has been her PC for 20 years!) came to the appointment with us! He had told me before he retired to keep in touch and let him know of any appointments and that he would see if he could meet us there. We had heard that he still goes to the clinic where we see both the GI doc and the PC (peds cardiology) and helps them out. I emailed Dr. D and he met us there. He knows the GI doctor and has worked with him for years.

I had noticed the week before that she has gained a few pounds and thought it could be congestive heart failure and retaining fluid. The Peds Cardiologist (PC) checked her for edema and it wasn't too terribly bad - so no increase on the meds for it. Well, I think we figured out where she's retaining it... in her belly. Even though she is on Miralax (1 1/2 - 2 doses per day), she is still not emptying her bowels completely. The GI doctor wants us to flush her out. He originally said that with children he has them take a dose of miralax every 20 minutes for 8 doses!!! I just sat there dumbfounded. That's a heckuvalot of Miralax! The GI doc told us that it's the safest way for kids and that it works. He uses this method all the time with children.

Jessica's main problems at this time are twofold: one) she doesn't have the energy to push out the poop (see, I told you it was mentioned!) and b) her bowels are sluggish due to the Ischemia. Even though I make sure that she isn't constipated, it's still really hard for her to "go". Several times a day I rub her tummy to help her pass the stools a little easier.

After all was said and done, it was decided that since Jess has fluid issues and can become dehydrated easily, that we will do 4 doses one day and 4 doses the next. Only clear fluids during that time and a soft dinner the night in between the 2 days. It's going to be a really hard thing for Jess to go through... and me too. I'll have to be with her the whole time. She always needs my help with potty stuff and won't let anyone else in there with her... not even her favorite nurses. I'm also going to have to keep an eye on her and make sure she doesn't get too dehydrated. Jess has been eating more lately - which is good - only it's going to make it harder for her to go through this cleansing process. The GI doc said that we didn't need to do it right away but soon - probably when my hubby would be here to help me out. I am NOT looking forward to this but the GI doc and the PC both said that Jess will feel MUCH better once it's done.

I've read online that ischemia of the bowels can greatly increase the chances of developing an obstruction. The GI doctor said that the cleansing will really help to prevent that. He also told me what the symptoms are of an obstruction. I am just praying she doesn't have to go through that!

I'm not sure why she has to go through all this bowel stuff on top of her heart problems. It just doesn't seem fair. It's becoming more and more of a chore for her to just go poop. I've been committed to helping her the last 20 years, I'm sure not going to stop now! I'm just concerned that I'm soon going to have to BE committed! haha!

The visit went pretty well though and Jess seemed cheerful. She was so excited to see Dr. D again and she loves the GI doc. I like his compliments... he said I don't look old enough to have a 20 yr old daughter so I think we'll keep him. While we were at the clinic Jess wanted to go over to the cardiology side of the building so we did. We saw the PC nurse whom we've known since Jess was a baby.... she had been at the out-reach clinics the last two times we had come into the office so it had been awhile since we had seen her. Dr. K (who did Jessica's last cardiac cath 5 yrs ago) was there and chatted with us and then some of our friends came around the corner! I knew they had an upcoming appointment but didn't know what day it was for. (OK, I had the email but had only had time to skim it and didn't pay attention to the day nor time). So we got to see them too!

After the appointment we went to IHOP for lunch with our dear friend, Susan from Tu Nidito. Susan and her husband, Randy, are volunteers at Tu Nidito and we've known them for about 9 years! They are so sweet! Anyway, we like to go to lunch with Susan every couple of months or so but with Jessica's health declining and the germs out there during the winter, it's been quite some time since we've gone out. Susan has brought us lunch from McDonald's but it's just not the same. We had a nice lunch, came back home and had naps. We are still trying to recover from our outing! Jess gets over-tired and then the pain sets in. She got me up early this morning and I'm still trying to get back to bed. I keep getting phone calls which is delaying my going back to bed.

Our computer had a virus (OK... 200+ viruses!) and was in the shop for almost 3 weeks! After I got it back, I couldn't find any of my old emails. We took it back to the shop this morning and they can't find them either. The main reason I need the emails is because I have saved some CM orders on them and didn't print them up and I need them for taxes! I should have printed them all up and put them in a safe place... I know. I'm also frustrated that I accidentally washed my cell phone so it died, and I lost all my saved phone numbers on there. I think I'm getting my butt kicked here. Here's the score:

concentration: 0
sleep: 0
pain: 100
confusion: 75 (I'm being easy on myself here. lol)
feeling like a dufus: 50

haha... ok, I'm just being silly. I'm not really as "down" as I seem, I just feel overwhelmed a bit.

My in-laws are bringing dinner to us this evening. We usually like to go to their house the day before Easter and have a little Easter egg hunt (plastic eggs filled with candy that grandma puts together and grandpa hides)... but since it is stormy and Jess just doesn't have the stamina to walk around much trying to find the eggs, they are going to bring dinner to us and spend some time here. Jessica LOVES looking for and finding the eggs but has felt bad because she gets so short of breath and feels horrible when trying to do so. We have even brought the egg hunt into the house and hid the eggs in just one room and it's too much for her. Grandma is putting a little basket together for her and will tell her that the Easter Bunny knows how hard it is for her to find the eggs so he left the basket at her house. I'm sure she'll have plenty of candy for the boys too. They don't care about finding the eggs anymore - just the candy. LOL My MIL realizes how tired I am and doesn't want me to have to cook. I'm so glad they are bringing dinner and are going to spend time here. They live about 20 - 25 minutes from us and I hope they drive safely in this rain.

Hope everyone has a great weekend and a Happy Easter. Thanks for stopping by!

Thursday, April 02, 2009

Updated on Jess, me and Computer viruses!

I took Jessica to the Peds Cardiologist on Tuesday and the visit went pretty well. We were there quite awhile for tests and we still have to go to the lab for blood work. They did an EKG and an Echo. Everything looks about the same as last year: her right ventricle is very large, aortic valve is leaking between mild-moderate range, shunt is open and working. We discussed her pain and the fact that she is in pain 99% of the time... sometimes her level is up to 9 1/2 (according to Jess) and she cries when it's that high. The pain sometimes wakes her up during her sleep and then she can't get back to sleep for awhile. The Cardiologist reminded me of his conversation with the GI doc and since there isn't anything they can do to prevent the pain, he recommended sending us to a pain clinic. I'm hoping and praying that they will be able to make her more comfortable and increase her quality of life. I haven't had a chance to call them and set up an appointment yet but I hope to do that in the next couple of days.

We had to cancel an appointment with the psychiatrist yesterday since Jess must have gotten overtired from the visit to the Peds cardiologist and didn't get to bed until after 3:00am. She then woke up a couple of hours later in pain and didn't get back to bed until 8:00am. I didn't get to bed at all that night so I had to try to sleep when she did during the day and then after her aid came in the afternoon, I had to take another nap. I ran out of one of my own pain meds and have been in such pain. Fortunately Karl was able to pick it up at the pharmacy so I'm taking it again.

I saw my primary care doctor for my fibromyalgia and he sent me for blood work, etc. I haven't heard back from him yet but I'm supposed to schedule my annual female stuff. yuck! But it needs to be done. My doctor told me that two of the best things to treat fibromyalgia is sleep and exercise and I'm not getting much of either. It's frustrating to not be able to be on a regular schedule but there's not a whole lot I can do about that. Jessica and I were talking about feeling left out. She feels left out a lot since she can't go and do what her brothers can do and they rarely play with her. They are boys and not very interested in girly things. Good thing that her home health aids can play Barbies and Pokemon games with her. She really enjoys that. Anyway, back to my story, I was telling Jess that I felt left out a lot when I was in High School since my mom was sick for a long period of time. I took care of my younger siblings after getting home from school and I had to cook dinner, bathe my youngest brother who was 2 yrs old at the time and get him to bed... after that I had to stay up to do homework and then get up early the next morning to go to band and school and start all over again. My youngest brother even called me "Mom". My friends were out having parties and hanging out while I was home being a mom. Jess asked me if I ever wondered if I would get married and be a mom and I said sure... ever since I was a little girl I wanted to get married and have a family. She asked me, "You probably didn't know that you would have a daughter with heart problems, did you?" I responded that if I had my choice of a bunch of babies, I would have chosen her. I'm so glad that I'm her mom. Jess hugged me and I asked her if she would choose me for her mom and as we were embraced, she nodded yes. I told her that we were supposed to be together as a family and we will be a family forever. She then started talking about what a great dad she has and brothers, grandparents, etc. She just loves everyone so much.

Well, it's 3:30am and Jess hasn't gotten up since I put her to bed about an hour ago so she must be asleep.... and I'm about to fall asleep here at my laptop. Oh, speaking of computers... our family computer has been down for over 2 weeks now. It crashed and I found a virus but couldn't get rid of it. Karl took it to a place we had worked with before and they found over 200 viruses! Austin has recently downloaded a game online (without permission) and we wonder if that was one of the major viruses. They guy at the shop had to completely wipe the hard drive clean and reinstall windows, etc. He said that one of the viruses had disabled the Windows updates so we started getting more and more viruses. WHO DOES THIS? The last virus had a window pop up that looked exactly like Windows and it wouldn't allow you to start windows without entering your credit card number... and it said that it wouldn't be charged. We knew that was a scam and after finally being able to access our AVG anti-virus, we found multiple Trojan viruses but we couldn't get rid of them. I hope other people are smart enough to not put in their credit card numbers when that thing pops up!

As if we don't have enough going on, I'm struggling with dental and medical insurances denying payments for things they should have covered. OY! What a pain.

Thanks for stopping by..... and if you get a chance, hop on over to my craft blog: FancyCrafty{Me} where I''ve uploaded a few new cards. If it weren't for my crafts, I'd be in a loony bin, so thank goodness I have that!