Update

Well, Elyza is doing ok. She has been fighting C. Dif. for the passed five months. We just got done with her doctor's appointment, and she tested positive. Her kidneys are putting out protein. But, we have not given up on her feeding therapy. We are still working on taking her out of state.

C. Dif.

Elyza has had a hard time during the last several months. On October 30 she had plastic surgery on the back of her head to take pressure off her brain. Shortly after that she developed a staff infection. She was in the hospital for over four months. During that time the antibiotics that she was on completely wiped out her white blood cells and she had to be switched to a new antibiotic. On February 10 she went in for a second surgery to remove hardware from her head that had been placed on October 30. When she got out of surgery the neurosurgeon told us that there was a possibility that she would be paralyzed from this second surgery. They discovered a lot of extra bone growth that wasn't there before and it had to be removed, in order to remove the bone they had to get very near her cerebellum. She was very weak after the surgery she lost three quarters of her blood. She also had to stay on her breathing tube for about 14 hours. She slept for about four days straight.

On February 25 she was finally discharged from the hospital.. Shortly after that she developed some lumps in her neck. We took her into her doctor and he said that her lymph nodes were very inflamed. To treat this condition she was put on more antibiotics. She finished her antibiotics about three weeks ago and now she has developed an infection in her intestines. It is called C. DIF which is kind of like a fungal infection. She is being treated for it but she is in a lot of pain.

MRSA and Care Center

Well, the infection is going in the right direction. The doctors have decided to send Elyza to a care center. We have mixed feelings about going to a care center. On the one hand, we want what is best for her. But we were looking forward to going home with a homehealth nurse, but they decided to send her to a care center instead. It is hard when we have a littleseventh to take care of as well.

staff

After almost two weeks, we have returned to the hospital. Elyza has staff, it is just below the skin, and it hasn’t hit her shunt, yet but it is a major concern. We will probably have a central Iv installed in her arm today. They are planning to keep her on antibiotics until the time of removing the hardware comes. Then they still have to test the bone, to make sure that it did not get infected, hopefully it stayed clean.

 

Surgery update

They surgery went well. She will need to recover for a few days. On monday, they will start turning the screwsto begin opening the back of her head. this will help to open up and relieve the back of her brain from pressure. She is currently having blood drainage, they say it will take a few days for it to stop bleeding.

Surgery

It has been a long time since we have written in Elyza's blog. I qill try to update what has been going on. We have been working very hard to help Elyza eat. She seems to be doing better at tasting things. But, it still isn't a real meal. She had a real bad virus in September which caused her to have a real bad rash. After would she developed really bad joint pain, to the point that she could not walk.. She had to use a whiel chair, that lasted several weeks. now she is going to undergo a major plastic surgery in a few hours. They will be putting distractor plates in the back of her head. they will be adjusted for a couple of weeks to promote growth in the back of her head.

Hospital Return

After spending several hours in the hospital last night, we had to return around one in the morning. We got about three hours of sleep. Elyza's breathing started going down hill, so we took her back in. they gave her some medication to stabilize her breathing, and then they decided to keep her under observation for eight hours. But, we are finally home and she seems to be recovering nicely.

Hospital Visit

Elyza complained of a headache this after noon. After having her lay down for a couple of hours without any progress, we decided to take her in. They did blood tests, a shunt series and a ct scan. After all of that, they decided it was a viral infection, they did a breathing treatment and sent us home.

Pictures

Well, I hope this finally works, we have been trying to update the pictures on here for every one to look at, I hope it works this time. These pictures were taken during one of our U of U fundraisers.

Fundraising efforts

This week was a pretty good week. We worked at the booth on campus until Thursday. We would have gone Friday but the weather had other plans. We pray that the weather will lighten up by Monday. Elyza enjoys saying hi to everyone. She like going for walks around campus with dad and running through the trees. She didn’t enjoy running off the ledge and falling on to the stairs below on Wednesday. Dad didn’t appreciate it either, and mom was stuck at the booth when she heard Elyza’s cry.

 

We took Elyza to Primary children’s right away, and other than a few bumps and bruises she checked out fine. She will be a bit sore for a few days.