Update

Elyza has been sick over the last three or four days. We thought it was just a cold, but, we took her to the doctor yesterday and he told us that her tonsels are really enlarged. He thinks it might be strep, so now we are waiting on the results.


email us
,

Feeding tube care

Elyza is doing really well. We have to change her dressings everyday. Once it heals we can change them every two or three days. Th person who changes the dressings and anyone assisting must wash their hands well with soap and water.
It takes at least two people to change her dressings, especially when she wants to do a lot of wiggling.

Home Again

We are home. Elyza got her G-tube placed on Friday. Elyza is hurting a little from her surgery, but she is a trooper. Inspite of it, she is still playing and being playful for the most part.
Well, I'm going to go help Patrice get some pain medication for Elyza.

G-Tube Surgery and fundraising

Well, it has been a while. Shortly after the last post, we all came down with a stomach virus, naturally, Elyza stopped eatting again. We got over it and we were just getting back to helping Elyza eat when we all came down with the H1N1 (swine flu). That made her not want to eat as well.
So, after working hard to help Elyza eat and trying to avoid another surgery and hospital stay, we have pretty much arived at the end of the allotted time for Elyza's NG Tube. Now we are trying to prepare ourselves for her Gt Feeding Tube Placement. We are both feeling stressed and somewhat disappointed that we weren't able to get her to eat on her own again.
In preparation for this, Patrice is selling some things that she made. You may go to FamilyArts to checkout the things she is selling. You may also donate by clicking on the button below.

Eating

Hello, it has been a while since we have updated this blog.
Elyza is doing really well. She did really well with her oral feeds today. She took about two Oz at her morning and noon feedings. She took a little less at her four pm feed, and at her eight pm feed it was less than an ounce. But, we are excited that she excepted four oral feeds in a roll. She also played with her bottle on her own. We had her play on the floor, and put her bottle next to her to see what she would do, and she found it and started experimenting with it, and putting it in her mouth. We hope that she continues to increase her oral intake.

Finally home

Elyza was discharged today. She is doing wel, we hope that we can get her to eat. That is all that is left. Getting her to eat has been quite a challenge. Hopefully we can get her off the feeding tube soon.

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.

 

New Hospital

Elyza started out the day pretty good. She ate two ounces in the morning. Her next feeding wasn’t so good, she only ate one ounce.
Later on, we got transferred to south Davis hospital. She completely stopped trying to eat again.
The hospital staff suspects that the stress of being moved from one hospital to another could have caused her to stop eating.
I was suppose to get a room to stay while my daughter gets treatment, but by the time we got to the hospital the social workers had left for the day. So that left the room up in the air.
Elyza began throwing up right before she went to bed. Patrice finally broke down. Glen, my father in-law suggested that we go stay at his place fore the night. The hospital strongly recommended that she get some rest as well. So, we went and stayed at Patrice’s parent’s place.
Later that night, my sugars shot up to four-hundred and five. I just wanted to sleep, but my father in-law wouldn’t hear of it. He insisted that I go to the hospital. At the hospital they gave me some I-V fluids, and twenty units of humologue. It took about four hours for my sugars to return to normal.

Hospital transferring

Elyza is eating a little. The doctor wants her to eat at least three ounces every three hours. We would love to see Elyza get off the feeding tube.
Primary children’s is going to transfer Elyza to a specialty treatment center tomorrow, where she will finish up her treatment. They will also help her get off her feeding tube. We hope she starts eating on her own soon.

Feeding tube

Hello, I wish I had good news to post. Well, actually, we have a little bit of good news. The good news is that her shunt hasn't gotten infected. The doctors suspect that there is a surface skin infection. They are going to send her home with IV antibiotics. She will be on them, for about fourteen days.

Elyza hasn't been eatting very well. The doctors decided to put her on a feeding tube. They say that there is a good chance that she might get off the tube in a day or two.
Well, that's it for now.

Back in the hospital

Hello everyone, Elyza had to return to the hospital yesterday. Her shunt got red and inflamed. The doctors ran some blood tests on her, but most of the tests have returned negative. The blood show that her crp levels and her white blood count is very high. They have determined that her sspinal fluid is clear of infection. The redness around the shunt tract suggests that their might be a surface skin infection. but the tests are still inconclusive. The doctors are worried that if it is a skin infection, that it might be too close to the shunt. Having the infection so close to the shunt could cause her shunt to become contamainated. They might try and replace her shunt to see if that helps.

A Mother's Day Gift

Most mother's day gifts are tangible, which are nice. My mother's gift however was seeing my daughters biggest smile ever. It is exciting to watch my daughter recover from her surgery. I love watching her be happy and playing. It is a joy to hear her babbling and having her be alert again.

Home Sweet Home

Elyza was discharged today. We are now home and doing our best to take care of her. She is eatting better, she is more alert and happy. We are a little nervous to be home. her fontanel is bigger than normal because of the pressure in her head. It is about the size of my palm of my hand. So, now she has a great big soft spot on top of her head which is sunk in. But the doctor said that it would fill in as she grew and developed. In the mean time, we have to be very careful with her. She can't sleep flat anymore, at least for a month. But, we are glad that she is doing so well. We would like to thank all of you for all of your prayers and support.

Loss of Apatite

Elyza is still having problems with keeping food down. She has also lost her apatite. They told us that it is the change in pressure. We hope she will soon start feeling better.

still recovering

Elyza is currently trying to rest. She is still having a hard time holding down her food. They gave her some medicine early this morning to help with nausia and it appears to b helping. She is also eatting a little more.
Her doctor says that everything looks good. Now We are just waiting for her to hold her food down. We might stay another night.

tough morning

Elyza had a tough morning.She vomited after her four AM feeding. It was pretty heavy. They finally had to give her some medication to help her stop vometing.

She vometed after her next feeding again. They will probably have her stay another night. On the upside, her head circumference has decreased by 1.25cm.

Recovery

Elyza has been eatting ok. She has been running a bit of a temperture and her heart rate has been a bit on the high end. The nurse said that as soon as her temp went down, her heart rate would return to normal.

The outcome

The surgery was a success! They had to put in a shunt. We were hoping that they would not have to do that.
The doctor is feeling good about the surgery. Elyza is kind of sleepy, but she has managed to keep food down. The doctors are saying that if she is doing well by tomorrow, then Elyza will be allowed to go home tomorrow.
Patrice and I are glad to have the surgery over with, but we are also looking forward to when she is fully recovered and back to her cheerful self.
Thanks for your love, prayers and support.

Fasting

We finally got Elyza settled down. We are now going try and get some rest before tommorrow. We are doing a fast fore her tomorrow. Please keep us in your prayers.
Thanks,

Surgery tomorrow

As we wait for tomorrow to arive, Patrice and I are feeling nervous. Elyza Seems to sense that something is about to happen. She hasn't been able to sleep today. She took one good nap today. She has been crying alot and hasn't really been eatting very well.
Patrice wishes there was more that she could do to help Elyza feel better. Our hope is that she will return to being the happy smiling baby she has always been up until these last several days.

Eliza's Special Fund

We have set up an account to help with Eliza's medical expenses. If you would like to donate to help our daughter please go to US Bank and the account is 253150663115. Your donations would be greatly appreciated. Thanks for your love and support at this time. You may also donate online by clicking on the button below.

Eliza's Surgery

Eiza is going in for surgery on Wednesday the 6th of May at 6:30 in the morning. She is having head surgery. She developed hydrasephalous which is fluid in her head.You can read more about it by clicking on the link below.
Hydrocephalus Info
Please keep her in your prayers and thanks for all the support from all our family, friends, and ward members.