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May 2002 Daily Journal
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September 2002 Daily Journal
October 2002 Daily Journal
November 2002 Daily Journal
December 2002 Daily Journal
January 2003 Daily Journal
February 2003 Daily Journal
Friday February 28, 2003
AWESOME is all I say for today you were able to witness the true miracle at this time to anybody who does not believe just look at Destiny today. Yesterday was a draining day alot of tears and emotions today was a brand new day and we made the best of it. Within the last 24 hours this is what has happened in more details today we had tea party with a blue and white table cloth sandwiches, chips, nacho cheese, grape juice, and desserts that were just yummy. Auntie Jodie and Alexis brought in flowers to cut and hotglue onto hats making this beyond words can say for the smiles it put on everyones face. Destiny was pouring tea for everyone which was actually grape juice and had a ball during this time Auntie Jodie, Alexis, Jordan, Auntie mommy (Cacelia), Alonzo and grammy we well as myself were able to share such a special day a person who works here at the hospital plays the harp was able to come and play for us during our party which was so touching to hear music always sooths the soul. Yesterday Destiny was given a handmade quilt for us to have the unit was given 210 by woman who made them for children here at the hospital. Trista called a couple of the radio stations looking for a kitten which the Easter bunny was going to bring but after the paperwork I signed yesterday Trista was able to make Easter come sooner with this gift upon calling the stations the radio announcers put out on the radio for someone with a short haired kitten to be able to be released yesterday a company came through and donated this kitten that was going to sell for $250.00 along with some food we have named our new kitty "Princess Talks A Lot" who slept in my arms and is so soft Trista is going to keep the kitty until we are able to go home. Upon asking for some milk cartons to be ordered I guess the cafe was tired of me asking to they requested a gallon of milk be sent to our room I guess I won't need any at least for a couple of days. The doctors are trying different medicines to help pull extra fluid off of Destiny's heart at this time we are trying Bumetanide which we only took one day so onto the next one, thiazide which is given once a day and we are giving that on top of the lasix three times a day we have taken her off the Dobuatmine and she is now on milrinone to help the heart contract better with the squeeze and the cough syrup we are now using to give a rest is tussionex (this helps her sleep and helps with the cough big difference.)Today was incredible tomorrow the sun will come up and sometime during the morning hours I will start my day tomorrow may be good or bad I will take it for what is worth and make the best of it no matter what. My will is God's will--The best for Destiny at this time we will not be leaving anytime soon from here Destiny is still a very sick little girl fighting day to day. Information about Uncle Ronnie he was at home with Aunt Regina she will follow through with his request I do not know when a service will be when as we find out I will post for some of you to know. Grandma, grandpa, Auntie Edna and Frankie thank you for the box of clothes, shoes and cards along with the lotion for my mommy I love them. Dakota thank you for you beatiful picture, Konni for all the weekly surprise to all of my friends and family for listening to me ramble cry and vent when times are rough you are my support in more ways then you'll know for me with you help I am able to break and then gather my thoughts and emotions and come back to be strong for Destiny.To Auntie Jodie and Alexis for bringing in all the goodies for a pinic in a hospital room an incredible day to share.
For many of you this is my form of communication to know what is going on day to day buckle up and stay close we never know which direction the path will go believe in FAITH the power of prayer has moved many moutains. Follow your heart and stay close. Our hugs to all of you and many many thanks for you to know what it means to us.
Saturday March 1, 2003
Did you hear heaven and earth move today?
Destiny had another awesome day she is on the road to recovery so much that by 6pm when Dr. Brauner came to check on her he suggested we start looking at next week to go home she is not sick enough to keep in the hospital. What incredible work the Lord does when we trust onto him. On tuesday 3/4/03 is two weeks from surgery of the port to cath being placed we need to be trained and then we are out of hear no offense but I am able to finally say WE at this point instead of me leaving. I know we still have hurdles, bumps in the road and even some pot holes to pass however I just need to remain on course and take it mile by mile no matter what. When we fianlly head home I will be requesting some more equipment to help out. Destiny is not eating and when she does it is not more then two to three bites once a day as of today her liquid input is the same as her liquid output.
Tomorrow is a new day the sun will come up whether I choose to get up by 9am or 10:30 am. For the last couple of days we are having to wake Destiny up by 12 or 12:30 to get going she is sleeping about 12 hours once she fianlly goes to sleep tonight she went to bed at 11:30 pm. She had a very busy day Uncle Dave and his friend Robin brought Destiny eight different colors of nail polish and we painted fingernails with whoever would sit still long enough. Ted and Destany brought princess crowns and matching earrings. Yvette and her husband brought Costco hotdogs for lunch yummy my favorite then they suprised me with a vanilla ice cream dipped in chocolate with nuts on tops I was on top of the world. Michelle and Kylee stopped by with pan of pasta and garlic bread. Nancy Eberle stopped by with a DVD player for Destiny hospital room to watch her movies on the TV. Grammy and one of her friends came by with her two daughters to check on Destiny. Auntie Cindy, Uncle Cliff and there two boys Cody and Calvin came by. Auntie Mommy (Cacelia) brought me some clean clothes for tomorrow and brought me my printer from home so I can hook it up and print some photos YEAH Trista and the kids came to see us as well. The day is busy with alot of people in and out of the room at times I know Destiny gets tired but at the same time it keeps her fighting and strong will to overcome the day. It gives her another day of memories, laughs and smiles that warm you from head to toe. She has this laugh when she laughs you can't help but laugh with her. You can sit and watch as she gets really tired she becomes a grouch who doesn't? I had to put something down across the room as I was walking all of the my three steps from where I was sitting Destiny said mom change me I let her know just a minute I need to put this away just as I am putting this book away she yells out NURSE will you come change me. From todays labs Destiny's SGOT/SGPT are up from normal levels I will keep an eye on this as I do. Sunshine days we'll be singing come get happy. Good night and God Bless,
Monday March 3, 2003
Come on get happy, Destiny is happy and smiling and amazing everyone with a true miracle from GOD. For the last couple of days she is going to sleep after her cough syryp and sleeping about 11 to 12 hours which is really good it gives her heart a chance to relax and for her to catch up on well needed rest. I sit and listen to her breathing and snorting with the oxgyen on and I end up snickering with a belly roll. Today is a new day. When we go home we are looking at the quality of life and making it as peaceful time most important making a possible her comfort. I know in my heart that GOD's will is the best for her and me I am given the chance to enjoy. Tonight grammy plans to stay the night I can't wait to go home and sleep in my own bed with per silence. I will post something later tonight of the days events.
Monday March 3, 2003
Today Destiny was woke up at 1pm she is sleeping from the cough syrup and needing the rest. The sun came out today it was incredible. Destiny was given a ukulele that was brought from Hawaii for her it was given to her while she was sleeping she kind of woke up then went back to sleep but as soon as she woke this afternoon she asked for her guitar it was cute so I was told I went to work for 4.5 hours to get away. For the miracle that is being witnessed is one thing I pray for peace over Destiny while she is sleeping because she is kicking, flaying her arms to push everybody away, and saying no owies no owies as soon as a nurse touches her body she will ask "What are you doing? Then say no owies the nurses will then tell her no owies go back to sleep sometimes she goes right back to sleep other times she falls asleep sitting up and then is startled when we lay her back down. I ask the Lord to comfort her while she is sleeping provide her with the armor and allow her the compassion to forgive all the nurses and doctors through this hospital stay. I come to your Lord and ask you to guide this family each and everyday to protect us in our daily walks. Amen.
I talked with Dr. Brauner yesterday to say that I would like to stay back in PICU unless our room is needed then I would give it up he said ok, so tonight I asked Dr. Coopes that if they need the room I would give it up she let me know that the floor is full I told her I know I was just being kind if our room is needed I would give it up. At this time we are still in room 304. For the time we have been admitting there is a peanut who is 5 months old I pray his mother is able to come to sit and hold this baby more. Please keep all these families in your prayers they need them. I have meet another mother who has been there 54 plus days she has a little one who is 4 months old and weights only 5 pounds I lift this family up to you Lord for healing and this little one and mother are able to go home soon to be a family with the other children who are home with there daddy, Amen.
Tuesday March 4, 2003
Today I needed to be at the hospital to get training on how to access the port Dr. Jolley came by this morning at 5:30 am grammy did not even open her eyes to talk the doctor was told I would be in later he did request that myself or Cacelia be there so I did not go to work today I went to sit at the hospital it was about 3:00 the nurse came in to say he is running an hour behind schedule ok we'll wait the the doctor came in and the nurse was busy he also had three other emergencies and will be back after he left another two nurses came in and they were going to show me.
Everything that is needed was put on a sterile field I was shown step by step there is the male nurse showing me a second nurse holding Destiny's left arm and upper body down, Dr. Scott holding her right hand and me holding her head turned towards me so she does not breathe over the site or cough and another hospital employee named Pam was talking and trying to get Destiny's attention so I asked how many adults does it take to hold down a three year old (5) the nurse got the needle in the first port and no blood came back so we had to use the other port which worked Thank God by now Destiny is calming down because nobody has a death grip on her arms or body. After talking with Dr. Jolley he has agreed to only access the port once a week PRAISE the power of prayer at first he was wanting it done everyday I knew hospital procedure would come in handy one day. I spoke with Dr. Brauner about more medical equipment for home and he was ok with that so he wrote a few presciptions for me. He is looking at letting us go home thursday. GREAT NEWS that will be 27 days from admit. We will need to come back to the hospital every three weeks and follow up with Dr. Jolley in one month.
On a more serious note for moment I would like to share with you last thursday when I signed paperwork DNR and we did know if she was going to make it my Uncle Ronnie pasted away this thursday my uncle will be put to rest and it is the same day Destiny is going home, is heaven and earth being moved? Or did my grandmother want to spend time with her son? I think grandma spoke to the Lord after witnessing what a stinkerbell she can be during recovery. Kind of said something like Lord I think she needs to work on many manners before coming home. I can see this can you?
Destiny's mission is bringing families and friends back to the Lord and to witness the true power of prayer and believe. In the last couple of days I am more at ease and just enjoy everyday--- my new saying is the sun will come out tomorrow and tomorrow is a new day. We walk by faith not by sight.
Thursday March 6, 2003
Last night I was so tired and Destiny was wide awake. Somewhere between 3 and 5 am Destiny had a fit she was kicking and screaming along with hitting me one of the nurse's stepped in to see what was going on. This is Destiny's way of letting go I just keep her from hitting me in the face. When the nurse came in the room Destiny stopped hitting put her hand on my chest to protect me from what was going to be said to her then she went right back to sleep. Dr. Brauner came in to answer question and get paperwork ready to go home. We left around 1pm I needed to access the port to cath before leaving once I did we ran out the door only making one trip to the car. Destiny was falling asleep two blocks aways after urping in the car. We brough everything in the house I we just sat on the cough to cuddle and relax I will work on cleaning up tomorrow. When it came time to hook up the oxgyen Destiny was not happy but after letting her know it was going on and would come off in the morning she gave in a little more but not much. I tryed to copy my photos from the hospital to a disc but it is not working so I am printing like made not to loose any of them. Destiny actually ate 3 bites of a waffle for super tonight by 8:30 she was ready for bed I'll let you know what time she wakes up tomorrow. Until then talk later.
Friday March 7, 2003
We slept in today until 8:00 am then I got up to finish meds. Nothing like the power of God to watch over us while we are sleeping peacefully in our home. I had the sound of the oxgyen machine running it was like a humming I slept better with the noise in my room then the peacefullness of the quite. Everytime I tryed to put Destiny's hand or leg closer to her for me to sneak out of the room she would go HEY where you going-nowhere I am just adjusting she snuggled closer then an woven rug. Destiny walks around like a little webble wobble her balance needs to be worked on she has been in bed for 26 days. I am putting lotion on her and around her legs where the femoral line was it looks really gnarly she will have more scaring there on both sides. I sat here today relaxing watching the awww of God to the miracle sitting in front of me I thank him not only for each day but for being a part of our lives I don't know how I would even begin without him. I want you all to know how much it has meant to me and my family for all your prayers and support. God Bless and Good Night.
Monday March 10, 2003
I sit and watch Destiny knowing the Lord has given us a miracle. We have been resting and cuddling the last couple of days to catch up on missed sleep in the hospital I put hospital stuff away but still do not have alot of engery to do alot I have all of Destiny's stuff in order and taken care of its my stuff I don't have the engery to put away. I am planning on going back to work fulltime tomorrow to work as many as hours as I can I need to provide for the family and I can not sit here wondering if today is the day Destiny goes home I need to get up and go to make the best of it. I have said today is a new day but have not been to work for more then 32 hours for the month of February and up to today tomorrow is a brand new day. God is showing me through the eyes of my daughter how important a smile can bring to someone else's life I love my job and look forward to going in tomorrow. I took Destiny to visit Auntie Cindy for a couple of hours today which was good to get out of the house we had not left since coming home last thursday, As the day went by Destiny was getting tired and the more she wanted to rest the more she would walk like a little grammy about 93 years old with the way she walks ( I call her my grandma Jessie for the spirit she has and the adult sense of humor this 3 year old has.)
Today was the first day Destiny wanted to eat had 4 cheetos 3 bites of chicken noodle soup and 2 bites of hotdog it is great to watch her eat and want to most important to see that it stays down. While we were getting ready to watch a Veggie Tale movie I had called Trista to about Princess Destiny wanted to talk and informed me the TV was to loud she was on the phone and to turn it down all I could do was laugh. I look, listen and watch Destiny since we have been home and she looks GREAT and still doesn't listen well but we are working on it but to sit and watch her is outstanding she is as an earth angel in human form. I know the Lord is watching over us in everything we do and I give him all the glory for what is happening here on earth.
We are looking into having Princess fixed and declawed before coming home but plan to join the two this week if it happens. I want you all to know your prayers and support helps me everyday knowing the Lord holds me up and guides me is more then I can say. I do keep asking for your prayers and I often give alot back to the Lord asking for only my salad plate or desserts first then I will have no room for my meal which is alittle heavy at times but he knows what I need and knowing I can handle it when I ask for his help. Good Night and God Bless.
Its about 11:34 pm and I wanted to share with you what just happened I am laying with Destiny hoping she will be going to sleep any minute now we have been there since 10:02pm. We say our prayers and Destiny is starting to relax she sat up to ask for two stuffed animals who sleep in bed with her big monkey and her stuffed doggie which two are better then the million we have anyways she hands me her monkey to say mommy will hold you then she hold her dog gives her a squeeze and hands her the dog to me to say the dog is licking her and it time to go to sleep which no problem. Now about ten to fifteen minutes go by and all of a sudden Destiny is talking again at first I was thinking she was playing then she goes "No I'm talking," NO, I'm talking with mommy. So at this point I open my eyes because I had to pretend to be sleeping I notice she is looking at the ceiling talking with her angels? Then she goes No this is my mommy and she grabs my arm to pull it close to her so with one eye open I am witnessing her talk with her angel or guardian angel a second or two pass and now she is waving good bye to them she motions back and forth then goes wrist, wrist, elbow, kiss. I am listening and watching what she is doing then she repeats the wrist wrist again I am blewn away by this to actually witness all of this. I know children are given a slight to see but talk about wow. Now this may of just been out of the blue for her to be thinking this but I feel like she was acutally talking with them if they were just coming to check on her now often times they come to visit while she is sleeping and she will be talking and laughing with them but she was looking only at the ceiling waving good bye and did not take her eyes off of the ceiling for a few minutes. This was devine intervention. So now I need to get up to share this with all of you. Destiny's mission here on earth is far more then we can ever image. I am going back to bed to see if she will share her bed last night as we were sleeping in a queen size bed mind you she asking me to move over I am pushed up again the wall and all she can say is mom move over then I ask her if she will share the comfortor with me no you can use my blanket oh thanks Destiny this will cover my arms but the thought was there at least she shared. I asked again for the blanket I said I'm chilly would you please share with mommy ok there is a corner. I can see manners is high on our list of training. Its time to get some shut eye. Dear Lord I come to you and pray for your protection while we sleep, to warn or wake me of any danger or harm, place the armor of God over our bodies giving us the strenght from within using your sheild. In Jesus name I pray- Amen.
March 14, 2003
The last couple of days have been good Destiny is wanting to eat some days it says down and most days it comes up. On Thursday Destiny's angel's were visiting this night I was to tired to witness I rolled over to hear her say I want Cheerios and a sandwich I happend to go back to sleep. We made a big move on wednesday night grammy and auntie mommy bought Destiny a air mattress with a stand and put it next to my bed so when I got home we all made a big deal over making the bed and Destiny having her own bed. To say the least she slept so good her bed is about a 1 1/2 inches lower then mine so when she goes to kick me at night it is actually my bed getting it not me. Today was a even bigger day I brought Princess Talks A Lot (AKA booties) home Destiny has been chasing the poor kitten all over the downstairs all I hear is kitty come here, kitty lay down, kitty go to bed, no go potty here. I made an appointment to have her fixed and declawed 3/31/03 was the soonest I could get her in with the SPCA I could get her in sooner with a vet and pay $200 plus dollars but I would rather wait for a cheap cheap price. So we are sitting here relaxing the cat goes over to my loveseat to scratch her claws I jump up and slap my hands running all of two steps yelling booties, No boots NO next thing I know Destiny is just crying hard I look at her no mommy don't hurt my cat. I sit Destiny down in my lap to let her know I am not hurting your kitty she can't do that to mommies stuff. So by the end of the night I send my sister to Wally world to buy a cat scratching post and water bottles to squirt the cat. I will write over the weekend as time allows to let you know about the cat and Destiny.
March 17 2003
This weekend went well a couple of times I asked why do I have a kitten and a 3 1/2 year old at the same time? Let see they both act alike, neither of them will let me use the bathroom by myself if I happen to close the door both of them sit and scream at the door and neither of them want to go to sleep at night. If allowed they would jump on the furniture and to top it off while they eat both make a mess you always know where they have been. I should call them both messy Marvin and her sidekick. Over the last 24 hours the cat got into big trouble when she wanted to mess with my africian violets and other plants that its self could cause me to declaw the cat myself no questions I just happened to get the squirt bottle and listen to Destiny cry saying don't get my cat, no mom don't squirt her. I'm sorry Destiny but Booties can not eat mommies plants it will make her urp. OK mom get her get her. Last week we had a big storm for days come through the area I decided not to post as much not knowing if we would have a power outage now for you in the states the winds were riping sections of roofs off houses, busting windows, and taking out power lines I know the whole cast of Wizard of Oz flew by a couple of times I saw toto and Dorothy also take out a couple more houses. Last night Destiny got made at Booties because she would not pay attention while Destiny was reading colors to her Destiny would say Booties I am talking to you this is blue and magenta excuse me - look at me I said this is blue. If only I had my video camera out to catch this moment it was to good to miss however I did not by the time I reached my camera the moment was gone. Now that this storms over Anchorage have left we have sunshine beautiful days of warm wheather around 40 to 45 degrees at times I feel like the storm that came through last week are alot like the storms in your life you just need to be ready and prepared know you are safe and have great faith and you will come out ready for when the next one hits the Lord knows your heart and will prepare you for all if you trust and believe. We are looking at going back to the hospital for a 72 hours stay the first weekend of April PRAISE GOD. Life is a gift it comes in all sizes for the miracle of child to bring to much to so many is a witness by allowing GOD a part of our lives to yours. Continues to please pray for the families in the webpage we have mentioned in the past and for the families we also meet our little friend Rachel B. needs our prayers right now for a recovery and healing during this time. Our little buddy Landon and his mom are still there and need your help as well so they may be able to go home soon to be a family and be together with the rest of there family. Destiny is actually wanting to eat some days when we go in the hospital I am going to ask if we can lower the amount of time she is connected to the pumps from 20 hours a day to 17 if possible Destiny walks with a little limp in her leg she does not go far she is only given about 3 feet of lines we even bought her a mini stroller to push her pumps around but she will wait until she is "free". I am going to close for the night ?Thank God for all of you. Good Night>
Wednesday March 26, 2003
Ok so we didn't fall off of the State of Alaska I have just been so wrapped up with the drama from work that I have had no engery to work on the computer after working on one all day. Daily life here at home has been going really good Destiny has more fight in her life no other she is feeling good and maintaining her heavy weight of 27.5 almost 28 pounds. We have been doing physical therapy here at the house with her to help her stretch her legs and use them with her being connected 20 hours a days to pumps and lines she sometime plays sorry for herself and doesn't want to do anything because of her lines. Yet when its bedtime she has no problem to drag those pumps and bag off her bed and out into the living room to listen to music on the tv. We are trying to put on the "soundscapes" channel one hour prior to going to bed somenights it works and other we play musical bed to who will be sleeping in the bed next to Destiny mommy, auntie mommy or grammy we all try for a half an hour then one of us ends up coming out of the room NEXT. Some nights Destiny will go down the list for someone to come to rescue her, grammy, Auntie Cindy, Uncle Cliff, there kids, Auntie Jodie, Uncle, and there kids, she'll ask for everybody she can remember or has in her little brain for memory I am talking A to Z list of names I always end up saying no they are home sleeping no everyone is sleeping goodnight Destiny. We say our prayers twice, give each other a kiss, say we love each other, get another drink of water and start all over. For the all the nights that are rough I wouldn't trade if for all the oil in the world. I am given another day of memories, laughs, smiles and most of all hugs. During my lunch time I try to call home to say hello and ask Destiny how her day is going everyday she asks for hamburger happy meal with a coke everyday I stop and get her one on the way home the other night I tryed something different I did not bring in the soda for her to see she meets me at the door asks if I brought her a hamburger yes here you go lets go sit down ok mommy she pulled the hamburger out and put one hand on her hip and the other face up in the air and goes mom I asked for ketchup only without even opening the burger I looked at her and said Destiny you need to open the burger ok mom. She opens it up and goes thanks mom, whew that was close I had to turn away so I would not crack up laughing harder then I was. Then that little hand goes back on the hip mom where's my soda Destiny they were all out No. You brought me on ( I know she means you brought me one yesterday.) Most of the time it is not even worth it to explain to this three year old because let me tell you she knows it all. Her favorite come back is "FINE."
I am going to close for the night I will find the words in a couple of days to let you all know things are moving forward and share some happy moments with you all. Good night and God Bless us all and to our America troops and there families.
Saturday March 29, 2003
It is beatiful today we brought out the BBQ grill out cleared an area of snow. Believe it or not for those of you in the states it snowed two days ago it was only inches if that. Today the sun is out reflecting off the snow its blinding. Well our kitty now lives upstairs with grammy and papa, Jordan is VERY VERY allergic to the cat. Boots got in trouble for eating on grammys plant. This kitty is messy she loves to get in the litterbox and play with the litter then if given the chance she will turn over her water dish so I bought a dish that has the water and food in one dish to prevent this. Destiny and walked to the end of our driveway today she was so excited to go out I want her to do things but I am always watching her breathing to make sure its not to much for her either.
I had early posted information and sent all of you a notice about a virus disguard- be careful this is a debugging program on your computer and you do not have to delete it. Destiny did not go down for a nap today and I am paying the price of debit right now so I am going to go put down my BEAR and pray hard that she sleeps through the night tonight
I would like to ask you for extra prayers for family friends who live in Wasilla - the dad was injured really bad in the high wind storm he was just released from the hospital this family needs our extra prayers.Thanks
Friday April 4, 2003
PRAISE GOD, we are seeing the beginning of a new month. It has been four weeks since our last hospital stay. ITS amazing watching her and knowing how important The Lord is in our lives. We had the best night two nights ago with no fights or urping. Auntie Mommy let Destiny wake up on her own so this turned out to be 1:45pm she had no nap and when I got home from work Destiny was full of engery we played watched a movie read some books then turned on the easy listening music channel to start help with relaxing about a half an hour of music Destiny said I'm tired so her and auntie went to her room layed down and within five minutes she was asleep. THIS was a true movement every since our last hospital stay going to sleep is really rough and most night horriable. We are trying different things every couple of days to help keep her interest. As I got up this morning Destiny crawled into my bed around 6:30 am to cuddle for a few minutes before I needed to raise n shine as I went to hold her I noticed she had no diaper on at first I wasn't thinking then I snapped awake really quick just laughing then I was wondering if she wet my bed no it was dry she was quickly given a new diaper to help prevent any leaks. She kind of woke up and said what are you doing- changing you-- ok she layed back down to sleep. Today Destiny is going back to the hospital for a tune in the PICU a couple of weeks ago I really let some of you know how much I did not want to go back and face the music of the unit again so soon after last month but today the sun is out and I have let it go this is the best place for her and its time to go we have everything packed to make out million and one trips to the from the car to bring everything in the room. GOD will watch over her and protect her while in the hospital I know everything will work out for us to return to home on Monday. I plan on taking Destiny's laptop to keep you all posted to our days. I am going to start packing up the car and will post later tonight or tomorrow, God Bless you all and your families, Ruth and family.
Saturday April 5, 2003
God is so AWESOME-----
Yesterday on the way over to the hospital Destiny was asking where we are going I told her the doctors house at first she said I don't want to go then I told her we are going to go play at the doctors house so she said yeah were going to play at the doctors house. We were about a block away when Destiny put her hands and arms in the air and goes mom put your hands in the air we're going to the doctors house from that point I knew this stay will be ok.
We arrived and Destiny got to play and laugh with her nurse Katie we walked into her room and Destiny looks at the xray board stops puts her hand in the air and goes mom where is my picture I told her your picture is not up there why mom because we don't need it there so she kept asking so I asked the nurse to ask if a copy from 2/26 could be sent up they will able to do the making a huge difference for her to see her own xray on the board. While we waited for her meds to come up Destiny would walk around the unit pushing her pumps in her stroller she had some of the nurses just laughing at one point they hooked Destiny up to her afternoon lasix when it was done the pump started going off Destiny sits up in bed and goes nurse Katie the pumps are going off, excuse you.
Dr. Scott stopped by to visit Destiny asked him if he would make her a chicken with a glove after saying please he did Dr. Scott drew a face on the glove giving it back to
Destiny who then looked at the picture looked at the doctor made a kissing sound with her lips and had the glove give the doctors leg a kiss leaving a imprint of the happy face he just drew (he was wearing tan pants) is showed up all the details. Destiny goes sorry.
So I am sitting here and its time for bed Destiny wanted to stay and play or watch movies so I layed down on my air mattress resting Destiny would call me as the movie ended. We had visitors today that by the time the girls left they were tired and Destiny was wide awake its around 8am she was singing and yelling in her bed the nurse came in to do meds and Destiny rolled over and took a nap right now we are watching movies I will post you tomorrow this is an incredible stay and everything is going great.
Tuesday April 8, 2003
I wanted to share with you how AWESOME GOD works in our lives we had the best hospital stay ever. Destiny had fun she was able to play with the nurses, singing to whoever would listen. She is full of life and ready to go. Praise God because it is all possible through him. Destiny would walk around her room then go over to the curtain and tell everyone she was going to take a shower she would ask for a washcloth I would talk to her asking her to scrub behind her ears, YEAP did you scrub your elbows YEAP, did you rinse your hair YEAP, don't forget to scrub your feet she would look behind the curtain put her little hand in the air and go I know mom I know. Then she would say mom I need my towel would you get me one please. SURE. It was really cute how she was finding wasy to entertain herself. I forgot my camera so I went to buy a couple of box cameras everytime i took a picture Destiny took one too I haven't had them developed yet so I don't know how much of the person she got. I'll let you know in a couple of days. KTUU channel 2 was doing stories on the kids they wanted to do on us we just wanted to go but said we will be back the first weekend of May for another tuneup we will do an update at that time. Last night Destiny asked to go to bed around 9pm she layed down but didn't want to stay in her bed so after three times of putting her back in her bed I let her in mine within 5 minutes she was sound asleep no urping this was just awesome. Tonight she wanted to go to sleep but she urped but has gone back to sleep with no problems. I read a book while in the hosptial it is one I highly recommend. With the help of Dr. Brauner we have been able to reduce the amount of time Destiny is connected to the pumps we went from 20 hours to 16 hours she is now connected from 9pm to 1pm which is great she can be free to roam to have fun. Then he started her on her reglan 3 times a day to help with the urping. I tell you Destiny's spirit is full her cup runth over. As she is disconnected in the afternoons with her auntie she wants to go go go. She either asks you to sit and play or if she can go for a walk so we try to something just not alot. I am going to go buy a couple of board games for her to play "Chutes and Ladders" How many remember this? Hi Ho Cherri O, stuff to help with counting can any of you remind me of some games with the alphabet? The doctor who I work for is weathered in Dutch Harbor at this time due to high winds no flights in or out of the island for days. I went in sunday for a couple of hours to reschedule patients. We had such an awesome visit it was incredible. Our prayers are heard each day for all those families with a member fighting the war keep all of them in prayer. God Bless you today in what you do. GOD BLESS
Sunday May 4, 2003
I realize its been a long time since I have posted Destiny is going good . I am on a rollercoaster of emotions right now I will fill you all in. I want to thank all of you for your emails and phone calls I receive wondering how things are going. You have given me many smiles. OK so sit down and get ready to read I feel like typing my little fingers away tonight.
As you know Destiny had a port a cath put in back in February it was not able to be used for two weeks. We have been moving with no bumps in the road until 4/23/03 when we can to halt around 6am then Destiny's alarms went off on her pumps saying high pressure I couldn't figure it out so I tryed to flush her line they would not move I re-positioned her disconnected tryed to flush again and the lines backed up I waited for the doctor I work for to answer the phone around 7:47 am after calling in I needed to wait until after 7:30 am to 8am for rounds to finish with shift change it would make it easier to reach the doctor. I called Dr. Brauner after 8am explained what was going on he said to bring her in. Upon our arrival we first needed to go down to xray for two different films to be taken I waited for the and hand carried them back to the unit the nurse then tryed to flush the line and it would not budge then tryed to draw back nothing was moving
at all Dr. Brauner suggested using TPA which is a clot buster at first I was ok with this then I asked is there anyway they could reaccess the port to see if that would help. The nurse used emla upon my request to numb the skin over the port these helps Destiny with anybody having to stick her with the needle. After cleaning and reaccessing the port the nurse drew back which looked like a clot and was able to flush the line with no problems and it was working then I was telling the nurse about the bottom port last week I have had problem with the bottom port when I went to flush the line Destiny came out of her skin screaming I thought I was pushing to hard so I went slow sure enough she screamed again I let the nurse know this for her to be prepared. Upon flushing that line Destiny did the same thing for the nurse I was never so happy for someone else to see this problem the nurse brought this to Dr. Brauners attention and back down to xray we went this time both ports were accessed for dye to be used to see if there was a problem Destiny was so scared when the doctor came in she never even blinked and the films showed everything was OK. I had this feeling in the pit of my stomach that something is wrong but was waiting to see what the doctors said. The xray doctor called Dr. Brauner to let him know the news so we were going to go home now Destiny was walking around and went to climb up on the chair to wash her hands yet again upon doing so she ripped out her line it got caught on her knee and out it came I ran to get the nurse while my mom stayed in the room the nurse put pressure on the site it was bleeding a little but not alot. I informed the nurse I did not want to leave I wanted there help at first it was suggested I would access at home NOPE no way we put emla back on her chest and wanted to wait another hour now by now the day has come and gone Destiny had not had her morning meds 3:30 was the cut off time if we did not have them we would need to order them I suggested I would go home and get her meds instead of having to wait even longer to get them up from the pharmacy be checked in and then given. I jumped in the car thinking I would be back with in 30 minutes oh wait it took 45 minutes with all the road destruction going on and people getting off work and I was going with traffic I get back to the unit the nurse is waiting on me to reaccess to make it easier for Destiny at this point the ports have both been access two times on top and two times on bottom I suggested we use the top port again. As the nurse goes to touch the skin and nothing more there is blood coming out from the needle hole in her skin not alot just enough to be alarmed so we wait a few minutes holding down a 2 x 2 sterile gauze over the site after a couple of minutes the nurse tryed again same thing I wanted the nurse to do this because I have had this problem at home I was just needing someone else to witness this for me to explain to the doctor. After a few more minutes the nurse calls in the charge nurse for him to look at what is going on. I ask if this is normal not really I ask is if from having to access and reaccess many times today I could be the charge nurse and floor nurse decide it is best to reaccess then let the doctor know since he said we could leave hours ago. So we head on our way home things are moving forward. Now since we have been sent home I am having no problems until 4/25/03 I am in the middle of a good sleep when the alarms go off again I jump up first to check is she is breathing then I more into motion of my check list the pumps I end up calling the PICU unit to talk with the charge nurse for suggestions. I am able to draw back and discard the waste and then reflush with normal saline and start the pumps with no problems. Now is seems a day and half has gone by and all of a sudden the pumps go off again this seems to be the routine every other day the lines back up and do not flush then they do and things are going ok well as of last week thursday 5/1/03 I smashed into the brick wall I have lot my confidence to access this port I am getting 5 to 6 hours of sleep at night only through the Grace of God am I am to function and move through the motions. So last week thursday I called a nurse with Professiona Infusion Pharmacy to come to the house I had spoke with Dr. Brauner the PICU has so many sick kids right now he did not want us to come to the unit or to the infusion center to help so with the help of the nurse we used TPA here at home it was placed in the line around 2:30 and we would try to draw back in 1 to 2 hours as Jeff the nurse was trying to draw back the blood it was like a trickle and still hard to flush he was able to access the bottom port when he drew back the blood was really dark but it was working up until friday night 5/2/03 around 12:45 off went the alarms nothing was working I paged the doctor to call but went to sleep around 2am then saturday 5/3/03 this night I started the pumps a little ealier just in case I needed to call anybody sure enough around 11:45 Destiny said her chest hurt so I had her show me wear under the bandage of the line as I was checking her chest it was wet I smelled this and sure enough it was TPN leaking from her chest where the needle goes in the skin Destiny kept saying it hurt I took off the dressing and was looking more carefully now and the skin was puffy I called the pharmacy who is on call 24 hours she suggested calling the nurse Jeff who came out thursday upon doing so he was across town I said I would try to reaccess myself when I did Destiny screamed the first time I was not able to get any blood to draw back so I took the line out to try again again Destiny screamed so this time when I took it out I called the nurses at PICU and asked if I was to bring Destiny in with her supplies would someone please do this I was told you bet so off we went to the hospital when we got there I had my sister wait in the car and I went to use the phone in the hosptial to see if one of the PICU nurse's who is now working in the ER was on shift tonight I was going to ask for her to re-do the access but she was off so we went up stairs the nurse told me it was good I took out the needle the needle was out of the port and the skin was puffy from the fluid going in under the skin not into the port line. I was never so glad to hear me say Thank GOD. The nurses were able to reacces with no problems and we came home so today Destiny is wanting to be held all day we had a power struggle once today but she is doing really good. I can not shake that feeling that something is wrong with this port it has two loop side by side when a doctor places these in a body more cancer patient then anybody they are good for years with proper care I just can't help that feeling that her body is fighting this line. We should be going to the hospital this week or this coming up weekend for our tune up. I will find the time if it is every other day to post an update to let you know how things are going. Once again I want you all to know your support goes a long wayyyyyyyyyyyyyyy.Thank you and God Bless of you for your help and patience. Just a remind that National Nurse's Week is May 6th thru May 9th---- let's remind all the nurses in our lives who have touched our lives and helped us at time of need. Not to mention all the friendships we make. I am going to share with all of you something I wrote in one of my scrapbooks about nurses.
Highlights and Milestones:
Knowing a nurse's life
shares the happy and the sad,
you can not change the
situation to why your families there.
You can change the families
life by what you say
and knowing that you care.
Good night and God BLESS you all.
