Jessica's Updates

Please Scroll Down for the most recent updates. They will show the dates above each update.

In Jan of 2004, Jessica had a lung bleed in the middle of the night. We called the paramedics and it was thought that her nasal passages had gotten dry and bled down her throat - then she coughed up that blood. We didn't realize until months later that it really was a lung bleed. We took Jessica to the doctor the next day and he agreed. Over the next several months she would have spells of coughing up blood and it was always blamed on either nasal passages getting too dry, sore in her throat bleeding and once she even had pneumonia. None of the x-rays ever showed a pocket of blood in her lungs so we were pretty confident it wasn't her lungs. The bleeding continued to increase and we even went to the doctor on her 16th birthday (June 3rd) because of her coughing up blood. Still didn't seem to be her lungs. On June 8th her Pediatric Cardiologist admitted her to the hospital because she had experienced 10+ episodes of coughing up blood in a 24 hour period. A CT showed that her right lung was filled with blood - it looked like charred glass, not a pocket of blood that could be drained. After a cardiac cath and bronchoscope it was found that she has many collaterals coming from her Aorta to her lungs that were bulging... some would burst and bleed into her lungs. Two main collaterals were coiled off in hopes that it would prevent any major bleeding at least for awhile.

Within two months Jessica was coughing up a considerable amount of blood and we placed her into a home hospice program (the team came to our house). Jessica was traumatized by the lung bleeds and worried day and night that she was dying. In the process of trying to find meds to help her relax, sleep and control her pain, she was put on morphine. Amazingly enough, after being on morphine daily, the lung bleeds became less frequent and then practically non-existent. A year after coming into our home, hospice had to leave since Jessica improved so much. The hospice team comes to visit socially on occasion and assure us that they will be here if we need them.

August 2006

Jessica continues to be "blue" and has very low stanima. She is scheduled to attend school two days a week for only 3 hours each day. She usually only feels up to going once every few weeks. Fortunately, her special-ed teachers are great and they will bring some of the other students over to our house to visit her when she can't come. Jessica still has trouble sleeping but has not had a considerable lung bleed in quite some time - just traces of blood. Jess has been having other issues though... she's had pneumonia a few times which have been very serious and required hospitalizations. Lately she has had severe tummy pain. She is seeing a GI specialist for the tummy issues. It seems that with her O2 sats being so low her digestive track is having a hard time doing it's job. It's hard to know exactly what is going on since the doctors don't want her scoped because of the dangers for her (with her history of bleeding, etc). She is on prevacid twice daily and miralax to help her bowels. We are having a hard time finding the exact dose of miralax that will work for her.

Jessica was hospitalized in June with Congestive Heart Failure. She is stable now and doing much better. She lost about 15 lbs of fluid! We are walking the fine line between keeping the fluid off and preventing her from getting dehydrated.

There are times when Jess gets very discouraged about her sick heart and how hard her life is... which is understandable. Most of the time she is happy and finds things to be happy about. Her favorite hobby right now is tracing pictures and then coloring them. She invented a character - Mary Potter who is Harry Potter's twin sister. She loves writting stories about Mary Potter and her adventures. Jess continues to be at a 3rd grade level in most ways... it makes reading her stories a bit interesting... hehehe. Jess loves princesses and has had a couple of princess birthday parties. She's a sweetheart and such a joy to have around. Here are a couple of pictures of her when she went on a date to a prom! She was invited to attend a prom for teens who have life-threatening illensses. Her date's name is Phillip.

April 2009

Wow, we've skipped along quite a bit here. I have been maintaining a blog for a couple of years now - which has a much simpler format to use. If you would like to check it out click here: Are We Having Fun Yet?

The last couple of years have been filled with ups and downs. Jessica is going to be 21 yrs old! Something we never thought we'd see! On the down side, she is really struggling. She is in pain every day. Jessica's heart disease is progressing: her right ventricle is getting more and more enlarged, she is constantly fighting off congestive heart failure, she has been fighting arrhythmia - up to 10,000 PVCs every day! She has developed Ischemia of the bowels and it causes a lot of stomach pain. Her bowels are very sluggish and it's a huge chore for her just to go to the bathroom. She also has a lot of generalized pain and needs quite a bit of morphine every day. She doesn't have the energy to go out and do much. She is still at the level of a 7 or 8 yr old mentally, academically and emotionally so it's hard to help her through her anxieties. Night time is the hardest - it's when all the anxieties come out. I am usually up with her until 2 - 3 am or later. She is requiring more care and is more "needy". I'm seeing a tendency for her to regress some and "neeeeeds" me more all the time. I don't get out of the house much these days due to the fact that I'm either caring for her, trying to catch a nap or am just too exhausted myself to go anywhere. My own health is suffering - my fibromyalgia is getting the best of me and I fight off fatigue, depression and pain too.

Thank goodness I married the most awesome man on the planet! He takes our boys to church, makes sure they do their priesthood callings, does the grocery shopping and is my best friend. He works hard at his job and he is a good provider. He also made me the most amazing craft room evah! I spend a lot of time in there and my kids come in and spend time with me. Jess and I have been making cards and spending fun time together that way. She spends most of her time in her bedroom - but who can blame her? She is tired and needs to rest and we have the perfect place for her to do that: her hospital bed! She can have it up like a recliner and she has a lap table AND an over-the-bed table. Plenty of space for her to draw, color and write her stories on. The lap table even has pockets on each side for her to store her markers. She has her own TV & DVD player, a Gamecube and a PS2. She also has a DS lite (that Santa gave her). She has a chair in her room so she can have someone hang out with her. The boys, Dad and I take turns sitting with her - and her home health aides spend time in there with her too. Jessica also has a "Netherland Dwarf" bunny rabbit who has a small cage in Jessica's room and spends the day in there. Jess loves her bunny.

Just last October (2008), Jessica's cousin, Marcus, died from brain cancer after a 2 year battle. Jess and Marcus were close and she has taken this loss very hard. She dreams about Marcus every night and they go to Disneyland or just hang out and talk. The first few times she dreamed about Marcus it made her cry. In the dreams Marcus would always ask her why she was crying and then tell her that he was OK and that he loved her. Lately she has been having fun with Marcus. He is letting her know that he is OK and that she will be OK too. The first time he took Jess to Disneyland they rode on a huge rollercoaster. No way would Jess ever ride one but Marcus sure would. When I asked Jess about her dream she said that she wasn't afraid to go on the roller coaster with Marcus because he was with her. In her dreams she isn't afraid of anything and she really enjoys spending time with her cousin. Jessica and Marcus have always been close... even before Marcus got sick. In fact, when Marcus got sick, Jessica told him on the phone: "If I can do it - you can do it!" They would talk about MRIs and blood draws... they were old pros. We miss Marcus terribly but know that he accepted a mission call on the "other side" of the veil. I am so proud of him and an thankful that he is hanging out with Jessica and helping to prepare her for when she needs to leave this earth.

I have used almost all of the allotted space for the FREE version of Angelfire so I'm not sure that I'll upload more photos. Again, if you would like to see more pictures and updates of our whole family, please visit my blog: Are We Having Fun Yet?

Thank you for visiting!