Leeking Again

early this morning, the nurse noticed that Elyza was leeking spinal fluid again. Nural surgery was informed, and they came to check it out. They decided to take Elyza to the Operating room. They redid the stitches and they found the problem.
The skin was forming a tunnel between her old shunt sight and her external drain sight; liquid was getting under the skin, and creating pressure. The skin was also kind of jagged around the incision which helped to create pockets for the fluid. But, they hopefully fixed that up. The doctor has put her on antibiotics for the next fourty-eight hours to prevent infection.
They said that we would beable to pick her up for twenty-four hours. They said it would probably be better for us, if we just went home. So, we are in Provo tonight, trying to get the apartment ready for her. They might discharge her on Sunday.

Spinal Fluid Leek

Patrice's mom and dad came to visit this evening. It was nice to be able to visit and we got to hold Elyza. While grandpa was holding his granddaughter, we noticed that her head was wet. The nurse looked at her head, then she contacted nural surgery. One of the doctors came to look at the wet spot. She decided to try adding some stitches. They are going to keep a close watch on it. Hopefully it will be ok.9

Shunt Replacement

Elyza got her shunt put back in today. she is doing pretty good. The doctor is going to keep her in the hospital for a couple of days to make sure everything is ok. She is suppose to lie flat on her back for the next twenty-four hours. They are going to get her on a regular feeding schedule.

Out of ICU

Elyza has been transfered back to the infant Unit. She is doing really well. Now the focuss is to internalize her shunt and getting her off the feading tube. Then, she gets to go home.

 

ICU

As you all know, Elyza has been throwing up since last Friday. She started acting less playful Tuesday evening. She was very serious when we went to see her yesterday morning. She was also very cold and clammy all day. Afew hours ago, about seven thirty PM, She through up again. Shortly after that, Elyza started breathing strange. Her heart started beating strangely also. The nurse came in to check on Elyza because of the strange readings. Elyza started going blue, so the Nurse gave her oxygen. She looked a little better. But, then she through up again during her oxygen treatment. The rest happened so quickly that it was hard to take it all in. It seems that one second she was getting help from the nurse and the next, they were calling out a code blue and doctors and nurses were running in to the room. Elyza's heart dropped to about fifty-five beats per minute. They did blood work on her and they determined that her electrolytes were down to 102 and her potassium level was up to 8.5. They want her electrolytes up to 135 and her potassium down to 3.5.

 

They gave her some medicine to help her potassium level and some calcium to help with her electrolytes. after that, she was transferred to the ICU.

 

The last results we got, her electrolytes her up to 118 and her potassium was down to 6.3. Her heart is back to normal, and she is breathing on her own.

still nautias

Elyza did ok today, until this evening. She started throwing up around seven. So, the doctor is going to give her a new medication that will help her digest her food better. We hope that she will respond to the medication well.

losing weight

Elyza started throwing up last night. They put her on an anti-nausea medication, but it doesnt seem to be working. She is also losing weight. The medical staff is working hard to figure out what the problem is.

Improving

Elyza's infection is pretty much gone. Neural surgery is predicting that she should be ready to get her shunt put back in by Tuesday. After that she might be taken back to south davis.

Rolling and Playing

Elyza was very active today. The doctor was glad to see her progress. She had her antibiotics readjusted and she got evaluated by speech therapy. She ate a little bit by  mouth.

Elyza has a couple of blankets rolled up on her bed. They form a kind of nest like thing to help Elyza stay in place. She has to sleep kind of at an angle, so she needs something to help her stay in place. Well, Patrice and I went to lunch, and when we returned Elyza had rolled over her blanket rolls and was almost upside down. She did that a couple more times. Her nurse decided to make thicker blanket rolls, they seem to be working.

Improving Slowly

Elyza has been cheerful and playful, for the most part. Her spinal fluid has improved. the tests show that the staph has stopped growing. She has had a little of pain now and then, but other than that, she has been doing ok today.

Patrice and I bought her one of those shiny sparkly balloons and Elyza loves it! she has been batting at it and kicking it all day. This after noon, she fell asleep with the balloon in her little fist. she held on to it through her nap, for almost two hours.

Elyza is going to start her eating therepy tomorrow. I hope she does good.

Back in Primary childrens

Elyza's shunt started getting red again. So, South Davis made an appointment for her to be seen by neural surgery at Primary Children's. We were hopeful that it would be a simple shunt replacement. But, they did a tap on Elyza's shunt and found an infection in her spinal fluid. She was admitted for surgery immediately. They removed her shunt, and now they are draining her spinal fluid externally. They are taking daily samples of her fluid to check her progress. She is currently on three types of antibiotics. The doctors have determined that she has Staphalococous Avreas in her spinal fluid. They are predicting that it will take about ten days to clear the infection. They are still hopeful to get her eating without the feeding tube.

 

waiting

Elyza seems to be doing ok. She is currently sleeping, but she was awake and alert. when we arrived this morning. We have a chiropractor friend that specializes in children. He told us that he can try and help Elyza, but it is up to her doctor to approve.

It is looking like she is going to have to get a gt tube. Waiting can be so difficult sometimes. We would like to give chiropractics a try. but, her doctor is a little hesitant to try that type of treatment.

Feeding Tube Mishap

Elyza is eatting baby cerial ok, now it is a matter o  getting her interested in drinking from a bottle.

We took her out for a walk, during our walk, her feeding tube got sneesed out. We hoped that she would eat own her without the feeding tube down her throat and up her nose, but she still refused to eat. So, now they are going to do a replacement of her feeding tube. it is really frustrating. Hopefully we'll be able to move on to a new chapter in our life soon.

 

Working hard to eat

Day by day we work hard to help Elyza to eat. She spoon feeds ok, now the trick is getting her to take the bottle. Her sspeech therepist feels confident that she will llearn, with time to eat independently of the feeding tube.

Fourth of July

We weren't planning to spend the fourth in the hospital. Elyza is doing good with baby food, now we just need to make sure she gets her fluids.

Her speech therepist feels hopeful about training her to drink from a sippy cup. She seems to do ok with it. Her doctor has suggested a gt feeding tube, which is a feeding tube that is surgically place through her stomach. We have decided to do that as a last resort. We are hopeful that Elyza can learn to use a sippy cup so she doesn't have to go through another surgery.