Amber's Angels

Come join us today for dinner or lunch at Zio’s Italian Kitchen!

Grant K Norwood — Mon, 09 Apr 2012 15:33:38 +0000

Show your support and help Team Amber’s Angels earn valuable funding for the Cystic Fibrosis Foundation!

Come have lunch or dinner (or both!) with us today, Monday, April 9 from 11am to 9pm to Zio’s Italian Kitchen, and this wonderful business will donate a portion of their profits to the Cystic Fibrosis Foundation to help find a cure. Zio’s will donate 10% for sales up to $500 for the entire day, and will double that and donate 20% if we help them earn sales above $500!

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You MUST present this flyer to help us raise money! Just click the image below, print it out, and give it to your waiter or waitress, and enjoy a delicious Italian meal knowing that you’re helping to find a cure for children with CF. What could be better than that?!

Child Life Week at DCMC

Mama Fett — Thu, 15 Mar 2012 19:27:11 +0000

March 12-16th is Child Life Week at DCMC and once again Amber’s Angels is helping to bring a little sunshine to the children. On Tuesday Amber’s Angels took some buckets filled with goodies for the Star War Bingo day. The buckets had play-doh, coloring book with stickers, crayons, bubbles and a slinky. You know the children had to love that fun filled bucket!

Thank you to everyone that donates to Amber’s Angels. This is one of the MANY things that your money goes to.

This possibly is going to be one of the hardest posts that I will have to do

Mama Fett — Sat, 19 Nov 2011 05:02:05 +0000

This possibly is going to be one of the hardest posts that I will have to do….as most of you know my daughter Amberlyn Fett had been sick since August from complications of her double lung transplant.

In August she was told that she was going through rejection but there were things that they could do to maybe stop it. Unfortunately it didn’t work. She has been in and out of the hospital since then. On Sunday after only being home for 2 days from her last hospitalization she told me to call 911 and she was rushed to the hospital once again. Each time we have had to go back to the hospital it just broke her spirit even more. Looking back I can see now that she knew already what was fixing to happen but did not want to worry ME. She was so ill this time that once again they had to put her in ICU and intubate her. It broke my heart to see her spirit broken. She had already started to withdraw from things that she loved, eating, talking to family and just wanted to sleep. She had talked to me of things that she wanted me to remember. Telling me that she didn’t want me to blame myself for anything that was about to come, that it was in God’s hands and that she loved me. I don’t know about any other parents out there but hearing your child say those words can spark terror in you heart.

This morning at 7:30am my precious daughter took her last breath and became an official Angel for her Lord. She was surrounded by family and her best friend Eddie Jones. I want to thank my Mom, Aunt Diane & Uncle Richard, my son Phillip, Eddie, Darren (her Dad) and Kristian (her Dad’s sister) for helping me to cope with this incredible loss that I have. Eddie you were a rock for our family and I am so lucky to have you in our lives. I know that Amberlyn was thankful that you were there by her side. Darren I am glad that you got to be here. I am sorry that it was under these circustances thou.

Mom and Phillip you are my rocks right now. There are no words that can even begin to explain how much you mean to me. You have been so protective, loving and supportive of me these past few days. I know that I am not the only one in pain and all I can say is as long as we have each other we will get through this and will carry on Amberlyn’s memory. I love you both soooo much.

Amberlyn did not want a funeral, she wanted to be cremated and her ashes spread at the beach. We will have a memorial to be determined at a later date to celebrate her life. Amberlyn did request that instead of flowers that donations be made to:

Amber’s Angels
Po Box 1220
Dripping Srpings, Tx 78620
http://www.ambers-angels.org/donate/

(a 501c3 organization)

Fett Family Fund
c/o Cattleman’s National Bank
Account #3136760
PO Box 1243
Dripping Springs, Tx 78620

(the bereavement fund for the family)

Well we got to San Antonio around 9pm Saturday

Mama Fett — Mon, 31 Oct 2011 05:42:01 +0000

Well we got to San Antonio around 9pm Saturday. It was a very bumpy stressful ride for Amberlyn. She said it felt like they hit every bump in the road which made her head and back hurt even more. By the time she got to the transplant hospital she was in quite a bit of pain. The on call internal med doctors came to evaluate her and they told us the plan for the night. Amberlyn asked them if she could please get some pain meds and they were like of coarse. We had Elizabeth for our nurse and she was so kind to get Amberlyn comfortable. They started hard with 4 big doses of heavy hitting anti-biotics. They didn’t know what they were dealing with yet but they wanted to put anti biotics on board and then take them off as we know what we are dealing with. I have to tell you that last night was the first night that we both slept really well. Amberlyn summed it up perfectly…we felt safe here, we knew that we were going to get taken care of. I cannot tell you how much that means to us. These people here are our family and we trust them. So today we talked to our doctors. Infectious control came by and said they were going to take her off some of the anti biotics that the other doctors put her on. They explained that the other doctors were just covering all bases to protect Amberlyn. Her chest xray showed that yes she does have something going on. BUT the results show that she has NOT gotten any worse from when she was here in Sept. and they havent gotten any better either, they are the same. I’m ok with that, as long as it isn’t worse we can deal with it. Amberlyn IS doing better even if she doesn’t realize it. I mean when we left in Sept. she was having to do alot more oxygen. She is on 2 liters of oxygen and stating 96-98% and that is good. Yes she still is having a hard time being active without getting exhausted. She has been in the hospital for almost 2 months straight and that takes a toll on her muscles etc. It is going to take alot of work on her part to get back in shape. This time she is in better shape to get better, she isn’t as sick this go around. The on call doctors said that they will talk to the head doctors and suggest that maybe she will need to get another bronch. They want to get another biopsy to make sure what we are dealing with and to make sure that she isn’t going through rejection still. So alot will depend on what the doctors say today. I feel more at peace now that we are where the doctors know her and arent’ afraid to take care of her. The doctors today told us that they are glad she is here for them to help her. I wanted to kiss them both! I was just relieved to finally have doctors that weren’t saying that they didn’t feel comfortable taking care of my daughter. God is Good. We are blessed and He is with us every step of the way. So on that note I will close for now. I realized that today is Halloween so I decorated the room a little…Happy Halloween!

Love ~Mama Fett~

Amberlyn is going to be transferred to San Antonio transplant hospital

Mama Fett — Sat, 29 Oct 2011 17:46:04 +0000

Amberlyn is going to be transferred to San Antonio transplant hospital. Xray showed something going on with her lungs and the doctor here feels that it would be best that she go to the transplant hospital. They don't really deal with lung transplant patients here. So we are waiting for them to get a room there for her to go to and then the ambulance to transport her there. I will update when I can. Please keep her in your prayers. ~Mama Fett~ Continue reading →

Please say prayers for Amberlyn

Mama Fett — Fri, 28 Oct 2011 14:42:57 +0000

Please say prayers for Amberlyn. She is having really bad headaches again and her heart rate is elevated. She is trying to get off the pain meds cuz the doctors have said that the pain meds are causing "rebound headaches". She has developed a cough so I am going to ask the doctor to do a chest xray to make sure that we aren't dealing with something in the lungs as well. We both feel discouraged today. :( Continue reading →

Amberlyn & I both got food poisoning

Mama Fett — Sat, 22 Oct 2011 11:16:34 +0000

If being in the hospital isn’t enough to deal with, Amberlyn & I both got food poisoning from the food we ate from the cafeteria two days ago! We both have been feeling miserable. Basically have been sleeping most of the day away only to be awake long enough to make sure that her meds are being done and for breathing treatments. Amberlyn felt so bad cuz they were able to give her something for the belly pain and such but I had to just ride it out. They couldn’t give me anything. One of the nurse’s said that she wish she could give me something cuz she could see how bad I was feeling. I feel a little better today hence why I am updating at 6:30am. Yesterday we had a Nurse Practioner with the Neurology deptment come and talk to Amberlyn. I am thanking God for Him sending her. SHE actually listened to Amberlyn and has made changes which I pray will show improvement. Amberlyn had told her that she is forgetful and can’t keep track with things. One of the meds that the other neurologists put her on is also nicknamed “dope a nex” cuz it makes you really tired and “stupid”. So the NP said she was going to take her off of it. She told Amberlyn she was sure she has heard it before but the pain med dilaudid that she is taking is causing what is called “rebound headaches”. She said until Amberlyn got off that she would not get rid of the headaches. Amberlyn told her that she wanted off of the dilaudid. So they made a plan to where they were going to wean her off of it. One of the other doctors was just going to cut her off cold turkey! When we told the NP that she was like “Oh no you can’t do that!” So with that said, they started the new treatment late yesterday. She will be here a little longer with this plan in effect. The other doctor came in after and told us that she was discharging us on sunday and I told her uhm I don’t think so. She got a little miffed with me but I swear do they not read each others notes! This is the same doctor that is adiment about Amberlyn taking insulin at night before bed if her glucose is high. Ok let me explain, yes Amberlyn needs insulin at bedtime but it is the long lasting insulin. She NEVER takes the short acting one before bed unless she is going to eat something. The manufacturer even puts a disclaimer saying that if you are not going to eat 5-10 minutes after taking the insulin to NOT take it cuz it can cause your glucose to bottom out. And guess what, the past two mornings she has had low blood sugars because the doctor made her take it. So last night she told the nurse she refused to take it. I am curious to see what her glucose is this morning. Amberlyn has made some more progress. I mean when we came in she was on 2 liters of oxygen. Monday we were able to move her to 1 liter with her stating at 98%! Then Thursday I told Amberlyn I was just curious what if we bumped her to .5 liters how she would do. She sort of freaked out and I told her its ok I won’t do anything. But after she had gotten up to go to bathroom and had caught the breath, I did move it down. Trust me if she would have tanked you KNOW I would have put it back to 1 liter. But to my heartfelt joy she did great, she was stating between 96-98%, sometimes even 99%! Now granted when she has to walk or do her physical therapy we have to bump it up to 2 liters but we are showing progress. Thank you Lord. Amberlyn was getting better about eating until we got the food poisoning. So I am hoping that she is better today so she can eat. I didn’t even eat yesterday. I think I was able to keep down some raisin bran at 10pm. Amberlyn asked for some doritos at 11pm and was able to keep them down so I am hoping that she will be better today. The plan today is that I need to get her out of the bed and sitting in the chair. I don’t want her to get pnuemonia from laying in bed for so long. When you don’t feel too hot you just don’t want to do much but I have got to get her to try. So please keep her in prayer. Thank all of you for your prayers and support.

Love ~Mama Fett~

Just a lot going on and I need to make sure that I am focusing on Amberlyn

Mama Fett — Thu, 20 Oct 2011 04:18:20 +0000

i know i haven’t updated. sorry. just a lot going on and i need to make sure that i am focusing on Amberlyn. we are still in a normal room. we have been having ups and downs. they started Amberlyn on some anti seizure meds. she hasn’t had anymore since last monday but they want to give her something to help prevent them from happening. they are also giving her anti seizure meds to help with her headaches. i guess anti seizure meds are also used for headaches. that shocked me a little. she is really weak and has lost alot of weight. but now her appetite has come back so she is eating more. for a while there i thought i was going to witness my daughter waste away, so needless to say i am happy to see her eat. today i could tell that she is starting to put some weight back on. thank you LORD!!! today was a rough day. her glucose was so high that the monitor could not read the number they had to send blood to the lab to find out what it was. it was 607!! that is dangerously high. then they came back and said that her potassium was high. good grief! the steroids that they had her on made everything go whacky. so they were giving her insulin everytime we turned around to get her glucose down. one of the drs wanted her to take this one med to bring her potassium level down but we felt really leary about taking it so Amberlyn declined it. the charge nurse was really sweet cuz she told Amberlyn that she understood and was ok with her not taking it for now. her potassium level was 5.1. the normal range is 3 – 5. so it was not that high. she said that if it was 6.3 then she would have to tell her to take it cuz it could be deadly. she talked to the dr and explained that we wanted to wait til 9pm to check it again cuz we felt the steroids that they stopped today was the cause of the high levels. the dr agreed to let us wait but she had to be put on a meter that should if she was in trouble with her heart. 9pm they came in to take blood to check it again. the results came back that her glucose was 247 and potassium was 4.3! Thank you God. so all is good there. Amberlyn is still having headaches but they aren’t as bad as they were when we came in. she is still having back pain but they gave her this thing called a 10′s unit. it sends pulses of electric jolts to help with the pain. she says that it does help. i need to check to see if we can get one for her for when we go home. one of the drs came in today and said that they need to get her pain managable and then send her home! he said that if after getting home she still has problems then she needs to go to san antonio to get seen. we feel that no one wants to take care of her. well i shouldn’t say that cuz there are some drs that want to make sure she is ok. the infectuous control dr is one of them. he said that she had an infection in her urinary track and he wanted to have her on an anti biotic to make sure it got taken care of. said it would take 3 – 5 days and he would come by to check her out everyday to make sure it was getting taken care of. just a really nice guy. well that is all for now. i am going to try to get some shut eye. she is peacefully sleeping right now so i am going to try to do the same. please continue to keep her in prayer.

Love

~Mama Fett~

It has been a roller coaster ride for the past two days

Mama Fett — Sun, 16 Oct 2011 04:41:37 +0000

So it has been a roller coaster ride for the past two days. Thursday Amberlyn was moved out of ICU and went to a normal room. Friday morning she went for an xray and came back all red in the face, it was swollen and her blood pressure/heart rate was sky high! The nurse called the doctor, he came to look at her and he immediately said get her to ICU stat! After getting to the ICU, drs came in and said that they thought she was having a reaction to a medication. So they also called in infectious control and they ran some blood cultures to make sure that she didn’t have an infection. The drs ran other tests as well. Praise God all tests came back normal. This is good and bad. Good cuz nothing seriously wrong, bad cuz we still do not know what is causing all of this. This morning a dr who we have never seen before came into the room and proceeded to tell her that she did not belong in ICU, she did not need to be on oxygen, she needed to get out of bed and start walking and he was sending her to a regular room! She had an ice pack on her head cuz she had a really bad headache and he took it off and told her she did not have a headache. She said she was going to be sick and he said “no your not, your numbers show that you aren’t” and guess what happened? She threw up! Too bad it wasn’t on him!!!! He told the respiratory therapist that she didn’t need oxygen and to take her off of it. The RT did as he was told and Amberlyn’s o2 went to 88%. The RT said that the minimum was 92% so he put her back on the oxygen and told the dr. I swear, why do we always get the jerks?! Isn’t what Amberlyn going through enough to now have to deal with this too?! The dr also told Amberlyn that the “so called pain” that she was complaining about was all in her head cuz all the tests show that there is nothing wrong with her. So she is now in a normal room with a headache and no help from the f***ing dr! I am so pissed. And Amberlyn is dealing with this by sleeping and not eating. Thank you very much JERK!!!!!! Please pray that Amberlyn can get better with morons like this as a care provider and for me to be the bigger person and not do something that will put me in jail. ARGH!!!!!! Sorry for my anger coming through here but I am so beyond frustrated. ~Mama Fett~

Mama Fett — Tue, 11 Oct 2011 16:47:13 +0000

ok well now that Amberlyn is a little better I can update more. Amberlyn is in ICU at Seton Main in Austin. Monday morning around 4am she woke me up crying saying that her head was really hurting. I decided to take her to the ER here close to home. I only did that cuz I did not know if I would be able to get her to San Antonio without complications. Her head was pounding and she was throwing up. Got her to the ER and it went downhill real quick. They did a CAT Scan. Wanted to do a MRI but Amberlyn said no cuz she could not lie flat for the 60 minutes that it would take. She told me that she was hot and I went to pull her jacket off and she started to have a seizure. They gave her some kind of med that stopped the seizure and then started calling hospitals to agree to do her care. She needed to be in an ICU and at Seton SW ER they do not have an ICU unit. That is the reason why she is in the ICU at Seton Main. It was a scary time. She was pretty out of it til about 11pm last night. They started her on some anti seizure medication. The plan today is to do a couple of MRIs and see what they show. So I will update after we get results from that.
Please keep her in prayer
Love
Mama Fett