Tuesday December 3, 2002
Well for the last three days Destiny has not urped at night - Thank you Lord however her food intake is not happening. For once I happy to have her on the TPN & Lipids at night to give her some sort of feeding without a feeding tube like an NG or J tube. Her bum is red again I called Dr. Brauner and he made some changes in her TPN to see if that will help. Professional Infusion Pharmacy will have a nurse come out to take some samples to check for infection. I have to call tomorrow to schedule this at first the pharmacy asked what nurses I used I let them know I DO ALLLLLLLLLLLLLLLLLLLLLLLLLL the medicines, flushes, dressing changes, changing the tips on the lines and etc. I would have no other way this is so much easier on Destiny and the family having only us take care of all of this ourselves. I am training my sister to help with all the care needed everyday I wonder if she thought when she came home in August if she would learn so much about medicines and doses along with timeframes. I am blessed everyday to have her here I love her dearly. I heard from the Forshee family today the dad Jack will find out in another three days if the stem cell transplant took however Jack has to stay around the area for 120 days I don't know how long he has to stay in the hospital but I know his wife is the one running back and forth from Anchorage to Seattle to help him and come home to take care of there children and work. I can only pray that Jack does not have to be in the hospital for 120 days I could barely handle 52 DAYS. Jack will need to be in Seattle until after Christmas keep this family in your prayers when you think about it please. I will try to contact Kyle's mom tomorrow to see how his radiation is going. Can you believe we have no snow at this time of year we did have some rain and icy roads the cold front is midwest I hear. I pray we get snow for Christmas Destiny is practicing making snow angel's on the living room floor now this cracks me up because she does not like to walk in it. She keeps asking me if she can throw a snowball at me - to many times watching "Annie". We are going to try to get together with the King of hearts and his family soon to dip pretzels and make some cookies for the kids to do. Well my contact are dry and its 10pm I will be out in Eagle River tomorrow and need leave the house by 6:30 am so before I feel woozy I am going to get some sleep. See ya when I see ya.
Wednesday December 4, 2002
This must of been the longest night in years, Destiny is so lucky tonight she has a bad heart. Tonight she stripped out of her PJ's twice, took the sheets off the bed and throw the pillow on the floor and at 2am I was done I asked my sister to come into the room she laid down with Destiny who then started to cry because she wanted her mommy. My eyes were blood shot my 3 hours of sleep got me threw the day but I can not even keep my peepers open any longer.
Friday December 6, 2002
Ok after a couple of good nights and much needed sleep I wonder what goes threw that little mind of my daughers when she is a pill like the other night. Today at my office the girls wanted to draw names for a Christmas exchange I feel like scrooge in the office I am not going to draw anybodies name I have to many run ends by trying to make them be a team player now why would I want to go and have lunch with all of them when we don't get along day to day. We have no snow yet and the east coast is getting slammed. I have clothes to fold and put away but I have no energy to do so I am sitting here on the computer instead typing different reports for Destiny's file. I go to work its dark and I come home and its dark I feel like I need to just stay indoors and not go out. This is the first winter I have ever felt like this is this me or do many of you feel like this? Destiny has an appointment to see Dr. Brauner 12/11/02 @ 9am. I fill post later that night to let you know how it went. Dr. Brauner has our appointment then he see our King of Hearts after us. I pray for both these kids that they are not in the hospital actually I pray for all those I have listed in our webpage and then some for nobody to have to spend Christmas in the hospital. If you know a family take them a dinner and some goodies for some homecooking. For all the day to day chores we do we are all blessed everyday for what is around us I often think of the nurses and there families because the hospital is never closed and somebody is always there working my hats off to the staff not only for taking care of my daugher and the children we have come to know but for the work they do and the lives they touch. I have often told many of them you can not change why we are there but can change a live by what you say and knowing that you care. Thank you for being a nurse and being our friend.
Sunday December 8, 2002
Well Destiny has lost a pound with all the diaper changes and red bum that she has she just screams whenever I go to change her. I was suppose to get a stool sample to take to the lab however in order to keep her bum from breaking out more I have to keep some kind of cream on it so the sample will have to wait for a sterile area after her bum is cleared up. Today was the first day in a couple that Destiny woke up and said she was hungry she had bacon, eggs and biscuits. Tonight as she was going to sleep she was trying to urp I looked at her and said you stop that now with a firm voice and she did some nights it works and some nights it does not. Destiny had a great day the play Grease is coming to town 12/10/ thru 12/15 my mom and sister want to take her but I can not let my guard down for all those people who will have a cell phone and the security you pass I will just buy the movie or get it on DVD to watch with her here at home. Dr. Eberle bought the office staff to all go and see the production 12/10/02. I look forward to it I am going to have the night out no kids can go wow two times out in less then 3 weeks then the Eberle's are planning a staff Christmas party at there house 12/28/02 I will get to visit with there kids who will be home from college actually all three will be home. They are great kids. Well off to dream land.
Tuesday December 10, 2002
SNOW we finally have snow can you believe it? At our house we have less then an inch in some areas I heard they had three inches. Now not only do we have to watch for everybody else driving you have to be careful for those who drive stuip. Destiny sees the doctor tomorrow I have a few question to ask. I went to see the GREASE production tonight I saw "FRANKIE" who sang teen angel during the show then at the end he came out and sang Beach Blanket Bingo, Venus and some other song had not heard but he said it was his number one hit in 1959. I enjoyed the show but I prefer the movie. CATS is the next big show here there are others but I have no interest so maybe for Christmas I'll buy my sister and I tickets to go see another show. Destiny is just inching to go outside and throw a snowball. Destiny lost a pound not like she was a heavyweight but she needs all the weight she has. She is starting to eat a little more by mouth over the last couple of days. I had to change the dressing over the central line she has been scratching really bad and lifted one side up and on another corner is scratching the skin raw now I have to take an extra step to prevent her from scratching or rubbing that spot anymore to keep it from getting infected. I am going to get some zzzzzzz talk with you all tomorrow.
Thursday December 12, 2002
Well yesterday's appointment went well-Destiny's pacemaker has 6 months of battery time. Her weight is 26 pounds and she is 35 1/5 inches tall. Dr. Brauner is not going to change any of her medicines since everything is working well we are however going into the hospital tomorrow 12.13.02 for 3 to 5 days to run Dobuatmine and oxgyen (time for a tune up.) To talk with Dr. Brauner is different from Dr. Wellmann. Dr. Brauner is very straight forward and pulls no trips around the moutain which is very good. I will be interested in talking with the doctors in Seattle. We are looking at February/March of 2003 to head back for another surgery this will be to replace the pacemaker. Dr. Brauner feels it is to Destiny's best interest to only replace the battery and leave the heart alone for the wires and leads he said the more they do they more problems arise and it harder it can be for recovery. So I am all for the pacer only to be changed out but once we get down there I will talk with the team of doctors in Seattle and see what they say. Over the next month I am going to get more information to where we'll be staying, how many people can be in the room, what the cost is, where the closest grocery store and Walmart are. I know where a Mall is to buy bathroom supplies that is a half an hour away from the hospital. God willing I am wanting to take Destiny to Seattle a good 3 to 4 days before we have to be there to take her to the zoo or something special before we go to the hospital. She loves the hospital so much here but in Seattle it is such a big hospital and the rules are enforced heavy. Anchorage is a big hospital in many areas the PICU has only 9 beds and there are rules but you have family members in different parts of the state the hospital here helps everybody without distrubing others by allowing family to stay with you here. One of the best blessing we received yesterday is Trista and Shawn, Haley and Amanda joined us for lunch after the appointment. Actually Shawn's appointment was after ours. During the time with the doctor (Dr. Brauner) asked if we were ganging up on him with both of us there I said no we have become good friends we are a good support for each other he did say he was glad to here that. I was in awwww to watch Shawn eat so well. He loves pizza and sauce to dip your breadsticks in. Destiny was showing off every minute I went to take Shawn's picture and Destiny stands up next to him and slide across the table on her belly to block the view so she is covering half of Shawn's face. I could not believe what she was doing here sat Shawn eating his lunch, minding his manners, and being so good. Amanda is Shawn's oldest sister was a big help in serving the kids drinks and sitting at the table while the mommies got there food. Amanda was playing with Destiny who played so hard that we were two lights from Pizza Hut and she was sound asleep. I am glad our families have got a chance to be friends and be there for each other along with all the other we have met along this journey. We need to plow our driveway tonight from the snowfall but the news is projecting another nine inches so why worry about plowing. Well I am going into work for a couple of hours today and will post more tonight. My love to all and will chat later.
What I forgot to mention while we were getting ready to leave Pizza Hut Destiny goes over to this basket and trys to pick the raspberries from it I jumping up and having a cow No Destiny you can't pick those and Destiny says mom I want a raspberry. No honey you can't eat those but why Mom? because they are wax Destiny says OH Sorry. It gave us such a chuckle.
So I am walking in the door and Destiny and Auntie mommy are toe to toe and Destiny is saying "I'm not doing nothing." to say my sister was done when I came in she goes oh good your mom is home. Destiny has three favorite sayings, 1. I'm not doing nothing.
2. NEVER as she crosses her arms across her chest and sticks her nose in the air and the third is 3. I sorry mom. I don't know how you feel about shopping this time of year but after working in the mall all day its the last item on my list to do I think gift cards are #1 on my list this year to give. As Christmas approaches you see people buying and driving like crazy but the true meaning of Christmas is what we need to focus on the birth of our savior. Remember all of those who need prayer but welcome a family in to bring a peace over them so they will not have to worry where that meal will come from. Well I need to go since I have asked Destiny to get ready for bed and her favorite answer tonight was NEVER. Dear Lord why is the bedtime such a battle in our house? I feel like I am being tested and some night I feel very defeated by the time she goes to sleep. Lord I come to you in front of everyone reading our postings for your protection during this hospital stay and to watch over this baby when she is sleeping that spirit comes down and holds her tight allowing her helmet and shield to protect her body allow her giving her the peace and rest she needs. Lord I ask for your peace and inner strenght over me and my whole family. In Jesus name I pray- Amen.
Friday December 13, 2002
Today around 10:30 am we received a call to cancel today in the unit PICU we are scheduled to go in tomorrow around 1pm to start out start. So we are sitting around relaxing tonight at least we have everything ready for saturday. It was been snowing off and on today. The roads are icy in some spots you must be really careful at intersection. I need go get Destiny some snow boots that fit she has mud boots and I didn't pay attention. I overpack every month we are there but she has plenty to do other then calling for whoever will stop by her door. I am going to sit down and watch Bug's Life again I know your want too. I will post a quick note before we head out in the morning.
Saturday December 14, 2002
We headed to the hospital to check by 1pm but after stopping for lunch we got there upstairs to our room around 1:10pm. The nurse did a weight which was 11.8 with her clothes on we need to wait for the doctor to write the orders before we get started. Dobutamine was started around 3:30pm Destiny was not hooked up at this time to oxgyen I thought we'll wait no big deal was I mistaken later that evening. Trista and Haley came to visit while Auntie Mommy stayed until around 9:30 pm which thank you because its nice to have someone there. The unit was slammed friday night and was still busy when we got there. The RT came in to check the oxgyen but I said go ahead and do it now little did I know- it took three adults to hold a 3 year old down she ripped off the stickers from her face twice and along with came the tube from her nose. She was screaming so loud and wanted nothing to do with this. We were finally able to get it on Thank you Lord I was just about to say no more forget it is not worth it we all sat down for a few minutes and nobody did not say a word.
Sunday December 15, 2002
Destiny had a good night no urping she was even hungry tonight after eating she goes I was a hungry hippo tonight right- yes Destiny you were. I asked alot today we needed to change Destiny dressing on her chest for the second day in a row she is scratching so hard she is lifting the dressing daily I am concerned and will keep an eye out for her scratching we do not need another infection so I am extra careful. I asked BJ if I could take Destiny to down stairs to get a salad she needed a change something different. BJ said it was ok but this makes everybody real nervous when Destiny is off the unit. I will take the responsibilty so they could relax however when we got down by the salad bar here talks a woman on her cell phone so you know my quite voice I said Destiny you can't go over there that woman is on her cell phone. Now the best part is the woman works for Providence Hospital so I want you to see the whole picture here I have Destiny in the wagon pulling that along with her IV pole I was able to have one of the PICU nurses go down to get her lunch at the same time so I feel a little bit better but I am so concerned for Destiny we have no room for errors that battery only has 6 months of juice left and a cell phone can interfer so once again I make my comment that we can't go near her but does she stop no at this point I am starting to sweat so I grab three items for Destiny's salad close the lid and head to check out but I am concerned I am about to be testing but God put this wall up between me and the woman and had her back on the other side of the food from us I was so thankful but was little loud about it when I got back to the unit. I made the comment they hospital should not only post to turn your phone off but WHY you need to turn them off. Destiny sat down and had 10 bites of her salad ok lettuce, croutons, and carrots with ranch dressing but at least she was wanting to eat. Today's weight with diaper and hospital gown was 11.5 but it sounds better when she is dressed because we are at 26 pounds. This was Destiny first time going to the doctor's house without Dr. Scott being there this was also the first time Destiny to go home and did not want to stay the night I told her we will go home in a couple of days but she kept asking me through out the night to go home then out of no where she asked where Dr. Scott was I said he's not here but why mom was her reply so I said he is with his wife Destiny had this real puzzled look on her face and said oh and nodded her head like ok she understood but that was the only time she asked for him but when we go back next year he will be there ( oh wait next year is in three weeks. I want you all to know what your support means to me I am overwhelmed tonight with emotions and strenght to help others but I want you to know that all of your prayers are being heard I am able to stand and be there and here at the same time I need to go to work tomorrow for about 4 hours then our office is closed on tuesday I will keep you posted.
Good Night
Monday December 16, 2002
Destiny is one tired little girl she slept in today until 11:30 am which is good she was rested by the time I returned from work. I stopped at Taco Bell for nacho and she ate 10 chips with cheese I love to watch her eat what a joy I am given. Today's weight was the same as yesterday 11.5 with a diaper and hospital gown only which is good because she did not loose. Auntie Mommie and Jordan brought super tonight so we all sat on the floor and had a pinic which I thought was cool. It kind of hit me today just how close Christmas is and do you know I have not bought one gift I am just now ready for Thanksgiving I will be able to celebrate the birth of Jesus and the life of Destiny. How incredible is this? My heart is filled with so much joy today I want to share it with you all reading our postings I sit and watch the nurses and look at the board when children are admitted to see who is there doctor and who is nurse, to me watching and listening to a new admit is like a piece of music everybody works together it started off slow then picks up really fast they all move together, talk, listen and take charge to help the child then as the child is a little more stable the music slows down its pace but keep going very strong. Tonight I introduced myself to a mom -The Lord gave me the right moment and time to extend my hand I feel very blessed to have meet this family. The little boy Corey who will be turning one at the end of this month needs our prayers his lungs are having trouble he is on a vent I come to all of you and ask to lift this little boy up in prayer and keep his family covered in blessings. I have learned to tell families that the nurses are there to take care of your child but the treat the parents and siblings. You are at the best place you need to be you are able to receive so much help. I indtrocued Destiny who was sleeping at the time to this mommy and her mommy. I was able to share with them and let them know there are alot of nurses who are true believers when I suggested to the mom to bring something in for her she already had it there her BIBLE. As Christmas approaches offer your help to a family just reach out and you'll know when it is right. It looks like tomorrow will be the day to go home.
Tuesday December 17, 2002
Destiny went to bed at 1:30 and woke up at 3:30 with a bloody nose not really bad but enough to make a mess on the bedding and herself. My heart always seems to race knowing she is on a blood thinner in her TPN bag but I also know this is the best place if I need to yell for help. I got her cleaned up and back to sleep we both went. I thought my kidneys were going to give out if I did not get out of bed this morning but I stay there until Destiny gets up she sleeps I sleep. I am so greatful to have a air mattress with me it makes the difference from night to day. The nurse started lowering the Dobuatmine at 1am last night every two hours it went down one point. One of the nurses last night said I was a brave person I told her I am no different from everybody else I do what I have to do Destiny is a gift I don't know The Lord's plan I just know I am to enjoy what I have and what has been given to us. This is all I know in my heart is to take care of and help others. I want you all to know I do not keep this journal to brag or to get pats on the back it is my way to let you know what is going on from a day to day situation I am bad a returning phone calls letter writing is out the window but this is something I can give back to all of you by letting you know good and bad days with Destiny. It is through all of your praying and keeping in touch how I am able to move forward on somedays. I am carried by God but I have to be the one to ask for that help from him and know he is always there. I know in my heart he has not given me more then I can handle but I realize how much I am able to help you as well. I thank God daily for what I have but also for all of your friendships you have given us. Thank you Lord for giving me words I need to put into writing. It is only 8pm and I am ready for bed but will wait until after 10pm dose of lasix then crash in my own room- hey will I be able to sleep with no noise, and no alarms YEP good night and God bless you each and every day.
Sunday December 22, 2002
I am sitting here relaxing and decided to write you all a note or two. I went out shopping to two stores on friday WHY because I've waited till the last minute to finish my shopping. People are rude, parking is horrible, why is it people have to run a red light and stay in the middle of the intersection and block traffic and tempers everywhere are flaring up so after that outing I stayed home the rest of the weekend and sorted the sock drawer caught up on laundry until I saw the pile in the bedroom and figured out while I was cleaning Destiny was changing clothes and panties every 7 minutes so much for being caught up. Does laundry every end? I think I need to buy stock in a sock company as well I do have a nice box for dusting now. I have not done any baking or made treats for friends I feel like I have been given so many blessing everyday I just don't have the get up and go to bake. To me Christmas has such a deep meaning that so much is missed. Destiny is so excited this year. She asked to see Santa she said she wanted her picture taken with him so I said you'll sit on his lap and take a picture she give me this puzzled look and said NO, I want my picture taken and I'll stand like this she stands with her legs apart and spread her arms open and says like this mom all I could do was laugh. No need to take on the battle of her screaming in a mall or having all the people who carry cell phones so I will take a extra Christmas picture here at home. On friday Destiny went over to spend a couple of hours with Auntie Cindy and the two just had a blast. The kids are out for Christmas break I have 70 people scheduled with Dr. Eberle tomorrow I will order in to prevent going into the mall. It snowed a little bit today and some last night.
Destiny is calling so I'll see you when I see you
Tuesday December 24, 2002
I had the day off today so I was going to sleep in and rest bake cookies make fudge dip pretzel and potatoe chips had the day all planned until my sister told me late last night that when I am home it messes up Destiny's routine so I am to leave and not come back until later today. So I got up I thought I'll go to the scrapbooking place clear off my car from the snow and I'm on the road I arrive at the first store and it's closed so I go to the second store and they are open I look over everything in the store about three times by the time I leave I head over to Alaska Wildberry for a last few items to mail out of town in and out with no problems so now it's only 11am what am I suppose to do. I'll check the mailbox for extra items to bring home Destiny had another 12 Christmas cards that arrived and 5 packages I even decided to have two extra keys made to kill more time no didn't work so I think I'll go have lunch what a great thing a day to myself not as many people out as I thought the road are being scrapped by the city perfect. I order my lunch I don't know what to do with my time I'm looking at the art work and all the areas that need to be dusted I am truly lost with this time to myself I finish eating more like picking at my meal and now I am going to go for a drive so I drive over to Toys R Us to watch the people go in and out in a hurry all frazzled. What a show I sit there until about 1 so I have called home a first time and was told not to come home just yet its now about 1pm I call home again and this time I call three times before I am told I could go home. Thank you.
We plan to open gifts after mom and dad get home from midnight mass but I will not keep Destiny up unless she just won't go to sleep but she can open gifts tomorrow she is just wanting to dig into all those gifts.
Wednesday December 2, 2002
Praise God the miracle of life is all around us ---- Jesus' was born today. Merry Christmas---------
What an incredible day Destiny went to town opening gifts and yelling Merry Christmas to everyone. Destiny received pots pans, dishes, mixing center, mixing bowls, everything needed for extra's in her kitchen. she was alos given clothes winter gear and chocolate donuts in her stocking to dunk in milk at night for a snack. We were all together today opened our gifts, came downstairs and watched Lilo and Stitch I found at some parts of the movie were really touching knowing that family comes first and how important it is to have family with you at all times you only have one set of parents this time of my life I certainly don't want to start over everybody fits like a glove. I sit and watch Destiny I am in awwww I see the miracle of God's hand on her life we are all together today nobody is in the hospital and everybody is healthy within reason. I talked to Trista last night Shawn is home and doing well himself, and the Alter's are home from Seattle to celebrate the gift of life they have been given with there son Kyle who just finished radiation at Children's Hospital. I am so thankful for every day I am given here with my children and my family. PRAISE GOD, FOR THE MIRACLE OF LIFE.
Friday December 27, 2002
I drove my sister's car to work today my doors were frozen and after I opened them I could not get it to close and driving to the next big town of Eagle River today which is about 35 minutes away I choose to take Cacelia's car. During my lunch hour I went to see the King of Hearts and his mom Trista I was able to give them there Christmas gifts and them gave us some. I got to race hotwheel on a racing track how cool. I needed to stop at the store before coming home it was
-17 below zero degrees I am telling you Wonder Woman would never be caught dead wearing that casket iron bra of her's this time of year. It take my car a good 15 minutes for the temperature in the car to warm up enough to even get in it. I almost had a cow on the way home my son called me on my cell phone and said mom we are out of water, WHAT do you mean we ran out of water? He goes I was taking a shower and the water stopped now to let you all know we have a well no city water runs down this street. So of course I blew up its winter time were out of water and the ground is frozen and nobody wants to add city water to the street so my mind and brain go into over drive. By the time I get home the pilot light was out what a relief I was in panic mode big time. As some of you enjoy your winter you are not missing the coldness here. My love to all of you thank you. Ruth and family
December 31, 2002
OK so the end of 2002, tomorrow the sun will come and a new year will be here. I have in years past always thought of making promises into the year now I am so thankful to have everyday I am given. We have a few road blocks this year planning for the next surgery I am looking into the hotel reservations, shuttle transportation, searching for the nearest Walmart or Sam's Club and so forth. It is only 10pm and I am ready to go to sleep Destiny is just bouncing off the walls. I want to say Happy Birthday to Trista Stockwell today. I need to go take my contacts out my eyes are so dry I will write in a day or so.
HAPPY NEW YEAR good night
November's Daily Journal
Destiny's Daily Journal
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