Amber's Angels

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

Amberlyn is now out of ICU and in a normal room

Mama Fett — Thu, 06 Oct 2011 22:09:01 +0000

Ok well I know it has been a couple of days since I have updated. A lot has happened in those couple of days. First let me tell you that Amberlyn is now out of ICU and in a normal room in transplant tele! Thank you Lord. She did have her second veino gram on Tuesday. The doctors wanted to a) take her port out, b) put stents in her veins to open them up and c) replace the port. But to much of their amazement they were able to use a balloon to open her veins. They were very happy to do that instead of having to use the stents. We will have to keep an eye on it all cuz they may have to go back and put the stents in if it doesn’t work and because the balloon worked they decided not to mess with the port. As the saying goes “if it isn’t broke then don’t fix it!” Again the surgery took quite a long time but at least this time I was prepared for it. They had A LOT that they were going to do so I kept telling myself that when I kept looking at the clock. Around 6pm they came and said she was back in her room. She looked good but was in so much pain. The areas where they put the balloons in had little incisions that were draining and it sort of freaked her out but we were able to explain what was going on. I was really amazed at how much fluids were coming out. It came time for me to leave for the night and she got so anxious that her heart rate and breathing became problematic so even though we aren’t suppose to stay in the room overnight I pleaded with the night nurse to let me stay. He was kind enough and said ok and that he would try to get me a chair to sleep in. My Mom went to the hotel and I stayed with Amberlyn. Amberlyn was able to calm down knowing that I could stay. So much so that she even was able to go WITHOUT oxygen! She was able to do that til 3:30am and her stats would stay around 96-98%. Praise God! But then her o2’s started to go down while she was sleeping so we had to put the o2 back on. But hey I’ll take it…baby steps my dear, baby steps =] The nurse was finally able to get me a chair around then but at 5am Amberlyn was in so much pain that we were trying to make her comfortable. Bless her heart she didn’t get much sleep. So now we are ready for Wednesday. The doctors came on their rounds and were happy to see that she was doing ok. They wanted to get her to a regular room so we waited to see if transplant tele had one. Around this time my Mom came and told me to go to the hotel to get a catnap. So I left and went to the hotel but I just couldn’t sleep. I went and got a few crafts for Amberlyn to do to help keep her mind off the pain. During this time my Mom let me know that they had a room for Amberlyn. So now we are on the transplant tele floor. Amberlyn did ok. Still in a lot of pain but is doing ok. I felt really bad cuz at 10pm I could not keep my eyes open, I crashed. I apologized to Amberlyn this morning but she told me not to worry cuz she did the same right after I did. Today she has done really well. The physical therapists came to work with her. Amberlyn was able to stand for a minute and then she had to sit down. This really upset her and we were all telling her that three days ago she could not do that so to take the little baby steps as a good thing. It is going to take TIME to get back to where she was.

The doctors said that they were thinking that she might be able to go home tomorrow but the physical therapists said well they were going to have to recommend that as a no. I mean she can’t even walk yet and they want to make sure that she will be able to do that before they suggest that she is ready.

Please keep Amberlyn in prayer. I know God is listening, He is showing that by her progress. Now that I am caught up I will be better on keeping up.

Love
Mama Fett

Went in yesterday to find Amberlyn awake, alert and NO TUBE!!!

Mama Fett — Tue, 04 Oct 2011 13:04:02 +0000

went in yesterday to find Amberlyn awake, alert and NO TUBE!!! The doctors came in at 10am and at 10:30am they took the tube out! She still could not talk cuz her poor throat hurt so bad from the tube. But she wrote that she was glad it was out. Also said that she was trying to swallow and was gagging and that was why the dr said to get it out now. Amberlyn said that one of the drs had to walk out cuz he got emotional watching her struggle. He is a good dr. We have been VERY blessed with our transplant drs. They are all so caring and protective of her as well as their other patients I’m sure. But it is always nice to know that they have your back when you need it. Her poor little arms are so swollen from the continuous fluids. I am hoping that they can give her some lasiks to help that or better yet stop the fluids now that she is awake. My Mom and Amberlyn’s brother Phillip came later and like I knew it would be, it was a very emotional time. Amberlyn started crying. Phillip sat by her bedside the whole time holding her hand. That made me cry. They are so close now, I can remember a time when they were trying to get each other in trouble when they were younger. lol Phillip had to leave a 2pm cuz he had EMT training and before he left he kissed her on the top of her head. After he walked out Amberlyn held her head where he kissed her. =/ The day went pretty good. She was supposed to go for a veino gram at noon but that turned out to be more like 3pm. She was gone for 3hrs! I was starting to panic. 3hrs is a long time to be in surgery. But finally at 6pm they came and told me she was back in the room. I was totally expecting to see her all in a bad way and to my surprize she was up and alert. She told me that she was awake for the whole thing! I thought maybe she “thought” she was cuz of the meds that they give but after talking to the dr that was there nope that wasn’t the case. She is going to have to go back today for the veino gram. Her veins kept collapsing so today they are going to put her to sleep so they can go thru her arms. They are going to take her port out, put in a stinte, put in a new port and hopefully that will make things better. He said that she had blockage in one of the veins to her heart therefore when she does any kind of actiivity she swells up. He said that it is a safe and fairly easy procedure. Please pray that God will give them the knowledge to do it right and safe for Amberlyn. When it was time for me to leave last night she cried and begged me to stay. It took me an hour to calm her down and it broke my heart. I told her soon she would be in a room that I will be able to stay but for now she needs to know that I am there always maybe not physically but I AM there. So that is the report for now. I will update later.

Love

Mama Fett