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Thursday August 1, 2002
WOW the first already where has my summer gone? OH wait I know providence hospital. Destiny had a urpy night did I ever mention how much laundry I can do in three days when she urps I even have 4 urp buckets downstairs to help. Destiny hates loud sounds and noises actually scare her, her nurse Karen and her were out on our deck the nurse got hurt she screamed Destiny screamed then at the same time a plane went by overhead and a train went across the tracks then she really came out of her skin. I come home from work after 2 hours my nurse is limping Destiny is sound asleep on the couch and Grammy reminds me we have a doctors appointment today.
Destiny went to see Dr. Wellmann today she sounds good her weight is just over 27 pounds she is doing really well. The doctor is lowering the volume amount of her TNP but her Lipids will stay the same rate. We are going to run another PRA test next week along with a CBC and a CMP. Destiny has another appointment next week for a weight check then the following week we have a check up. I ask when the next pacer and echo will be scheduled. Her heart may or maynot change much from the last test but it is a peace of mind to see there is no cardic failure and to know how the battery is doing for her pacer. My name and number was given to a mom in Fairbanks her son just received a pacer 5/31/02 she wants to talk to someone who's child has one. I was so touched I get to help or talk to someone regarding the pacer. Yeah.
I am really trying to get out of the house for 2 to 3 hours when I have a nurse here. I feel so refreshed and almost relaxed to be able to enjoy the rest of the day. Its more of a mental break.
August 2, 2002
I keep thinking one morning I am going to wake up and my hair color will be completely white forget the gray.
We had a rough night last night Destiny woke two different times screaming it scared me to death because I was sleeping. By 9am she was up for the day Destiny is not a morning person anymore, talk about does not play well with others thats my kid. I went to work for a couple of hours to help out today, by the time I came home I almost need toothpicked to keep my eyes open I think its going to be a nap day. Then I can run with scissors and play well with others.
Monday August 5, 2002
Here we are towards the ends of our summer and today is the first day we are venturing outside of our bubble (our house) I have decided to take Destiny and myself and go to Wasilla and spend the night this is out first big outting in months. We are going to Karen and Gordan's- Karen is out nurse 5 days out of the week but most of all they have become our friends. What a better way to camp I have our nurse with us. So I am all packed it is just a over night stay and we made 4 trips to the car and we still have to stop at the pharmacy to pick up our Lipids and Lovenox.
Tuesday August 6, 2002
I feel so refreshed what a difference it made in me.
Destiny had a great time, Karen has 4 cats and 1 dog the 2 youngest cats are kittens named Ralph and Alice-
Alice thought Destiny was better then cream cheese on toast. Alice would come and and lay on Destiny's legs and want to be petted and Destiny at first wasn't too sure of this but then warmed up to Alice. Until I gave Alice one of Destiny's sock then Destiny had a COW thats my sock!!!. Destiny would stomp around the kitchen floor just to hear her shoe thump on the floor. All was good until it started to get dark then Destiny asked to go home. I would remind her we were staying the night and would go home in the morning Destiny was not to sure about that. By this morning I had to wake her up at 10:30am. Talk about a bandaid sticking she would not leave my side. As we were heading back to Anchorage all she kept asking for was Auntie Cindy I would tell her no not today later in the week- Oh Ok mom.
Wednesday August 7, 2002
We had such a great day Karen, Gordan and I took Destiny to the zoo she fell in love with the deers, turkeys, and birds. I am going to start taking her more places just not into enclosed areas with alot of people with her immune system being lowered by the cell ceph. I am not longer going to live within our bubble life is too short. God is watching over Destiny and her family and this is his will.
Karen went to Providence today to pick up the vials to draw the blood and to take the extra needed to run another PRA test we have nothing to loose with the
antibodies at 100%.
I PRAISE GOD for the time I am given with Destiny. Everytime we run the PRA test my stomach sinks all I hear in my head is enjoy the quality of life you have with Destiny, but its not just with her but with all my family. After one of the books I read I have taken a quote from it "Enjoy her Ruth."
I have started to go to work for 2 to 3 hours a day when the days allow and I feel so good when I come home. I am able to do something for the Doctor and his wife, most of all I am able to give back to so many of you. I had the great pleasure of reading a webpage
from a mother who's son undergone a living transplant.
Each day Destiny looks better, has more engery, and smiles non stop Thank you Lord for the daily miracle you do in our lives. Tomorrow I will be taking Destiny into Dr. Wellmann's office just for a weight check- I do have to vent that I hate doing this. The thought of exposing her to germs or what if she gets sick. We are lowering her immune system and why do I have to put her at risk. It would be nice if the doctor brought the scale to our house or had the nurses use my at home. I know with all my heart the sun will come up tomorrow and I will grumble while I get Destiny dressed and in her car seat and while I drive to the hospital but I will take her in per his request. How many 2 1/2 do you that will wear a yellow mask to there appointment? Destiny does but she fights me all the way into the building too.
Thank you all for following out story, I know what the power of prayer can do.
Thursday August 8, 2002
Well it was pouring buckets of rain here today and I made the decision I was not taking out in the weather. She is scheduled with Dr. Wellmann on the 8/13/02 at 11:15 or 11:30am. I weighted her at home and my scale says 27 pounds still which it could be alittle bit more but she looks good, her color is great, she is happy. Granted I am not a doctor or nurse but I am her mom the on who is with her 22 hours 7 days a weeks. On my way home today I kept hearing the song
"Lean On Me" that song is so true it can represent the Lord in many ways to lean on him. I have come to say out loud many times in the last week that Destiny is an adult in a toddlers body. Tonight she was pretty whinny and wanting me to hold her, so in a joking way Karen asked Destiny do you want some cheese with that wine, Destiny said yeah. Tonight I wanted to draw all her meds and start the pumps its been a couple of weeks since I stuck my foot in so I did and Karen guided me all the way. I remember so many of the details I thank God that Destiny is not on any vents, or sleeping machines. I sat down to watch JOHN G the other night and I picked the movie apart more then I enjoyed it. I did however laugh when the kid was laying in bed and his parents went to talk to him on a vent no less and he whispers I can't talk. Now you some of you have have to see your chilren on a vent or maybe you have not but your children is unable to talk to you at all. That movies says nothing about anitbodies but it did mention the some of the same meds Destiny is on. When this movie first came out I could not watch it because it was to close to home but I wanted to watch it to see what truth it was going to reveal. Next time I think I will just stick to the kids in Mexico that Destiny loves.
Friday August 9, 2002
Well I got to surfing last night and found some great websites I am borrowing this poem from "Make a Child Smile" this is what is in my heart to share with you.
^^^Let Me Give^^^
I do not know how long I'll live
But while I live, Lord, let me give
Some comfort to someone in need
By smile or nod, kind word or deed
And let me do what ever I can
To ease things for my fellow man
I want naught but to do my part
To "lift" a tired or weary heart
To change folks' frowns to smiles again
Then I will not have lived in vain
And I'll not care how long I'll live
If I can give...and give....and give
(Author Unknown)
Monday August 12, 2002
Well tomorrow we have an appointment with Dr. Wellmann. We are still waiting to hear from Stanford about the last PRA test. The pharmacy that delivers our medicine called and spoke with the doctor and he plans to continue the TNP/Lipids and if her weight is up he will lower the volume slow. I heard that Shawn has been home from Portland for a week now but is back in the hospital with an infection. I ask to keep this family in prayer nobody can ever have to much.
Tuesday August 13, 2002
Today's appointment went well. Destiny weight today was 26 1/2 pounds she lost a little but was sick the other night so I kind of thought so. We are continuing the TNP/Lipids at the same rate and same volume. No news from Stanford so we wait, and wait. Isn't it funny that month when we sent them the wrong tube we heard from them the next day. We brought Shawn a sticker book and plan to go into the unit real quick give Trista a hug and Shawn his book and leave and I will make sure Destiny is wearing her mask. There are alot of real sick kids back there right now the unit is full. In today's newpaper was an article about Dani Mosley's Celebration of Life being held Friday August 16, 2002 from 5 to 8pm I plan to attend. This friend gave us alot of wisdom. When your child is sick they become adults real fast to what is going on with themselves they are just have little bodies but the minds of an adult. I have a few pictures of Dani and Destiny together in May that I was able to take. I am going to give Dani's mom and dad the copies that I printed. You can never have enough pictures of your children. When the time allows and Destiny and Shawn are able to get together outside of the hospital you bet I will be taking pictures then too.
Thursday August 15, 2002
Well today I had to call Dr. Wellmann's office and ask if they have heard from Stanford. NO not yet. SO I asked, would they mind checking to see if Stanford even received the blood. Michelle in Dr. Wellmann's office called Stanford and then called me back this is a verbal notice at this time the antibodies are 93% praise GOD,
now before I go any farther I must let you know I am not going to jump until I see the antibodies keep going down over the months to come. We have a LONGGGGGG
road ahead of us. YES this is good news. In order for the doctors to consider a transplant her anitbodies need to be lower then 40%. I know in my heart no matter what happens it will be ok. I know that through prayer is how we are getting to this time in our lives with good news. Most importantly it is knowing GOD first and foremost. This was a sign of relief when I was told this information because if the antibodies were high we would have stopped the cell ceph and the once a month treatment of IVIg. There was nothing else to try. So I know in my heart this is good. But I can not let my guard down. Know that if Destiny does not undergo a transplant we are going to try to keep her healthy enough to undergo the replacement of a pacer surgery. This can be done here in Anchorage but I would rather go to Seatte for many reasons -
1. I could not handle to be medevac again under a critical time (that is the longest flight of your life.)
2. The doctors there have already worked on Destiny twice plus the have a specialist to place the leads on the heart in the correct spots.
3. They replace pacers every week and have a big hospital, Providence is able to do so much.
4. I trust my doctors hear but could they live with themselves if Destiny died in there hands after being so attached to her. I would rather the doctors in Seattle take any risks. The friendship I have here with our doctors they are a part of the family.
Friday August 16, 2002
Today I went to the Celebrations of Life for Dani Danielle Mosley. This was very touching to see her classmates get up and speak about her. To have adults share a fond memory they have and to see so many people attend. As I sat there listening to what people were saying this child sat behind me just sobbing for the loss of her friend and my heart was breaking for so many people. We were all there to let her parents know we care and to show how Dani has touched our life and lives in our heart today. I learned tonight that just before Dani left for Stanford she accepted the Lord into her life how incredible to know the peace she had at a time of need. I want to share another family with you all tonight who live in California there son's name is Josh and he received his transplant weeks ago his parents have created a web page as well. I sit and read through there daily journal and once again realize how precious each child's life is, how we are so precious to God and we are his children. At times I don't know what was harder to be told my child would need a transplant or to be told by the doctors we will not be doing a transplant but will reconsider it. There is nothing more precious then to have a child in your life to share your love and give these little peanuts there foundation for God. To all of you who believe think of all those lives that do not know the Lord those are the ones we need prayer. I ask you all to continue to pray for these families but to reach out and pray for someone you have not met. I am fighting for everyday I have with Destiny and my family. May God bless each and every one of you who read our posting.
I thank you all as you continue to pray for us.
Ruth and family
Monday August 19, 2002
Well I sit here with alot on my mind. I realized today in how powerful the power of prayer is. For months I have been praying Destiny would be able to have a heart transplant, but I witness the power working everyday of her life that has been given to us in May the doctors told me they have used all the rabbits in the hat for her there was nothing more they could do. Her pacer is set at the highest setting to prevent cardic arrest. Today I sit and look at DESTINY this is the best she has looked in months, her color is good, her weight is excellent and all of her meds are staying in her daily. We have nurses who love there job and love working and being with Destiny and she loves them too.
I am so thankful to have the Lord in our lives to provide us with such a miracle. I am greatful to have so many of you reading and following our story and keeping us in prayer everyday. You are a physical back board to us, Thank you.
Tuesday August 20, 2002
We had a great weekend we went to Dr. Eberle's and his wife Nancy's house Sunday August 18th we roasted marshmellows this was a first for Destiny. She had more fun burning and catch the marshmellows on fire. Her fingers would get sticky and she would let Nancy know so she could lick off the stickiness. Destiny thought was to funny. Its been raining the last couple of days off and on we had plans to go back to the Eberle's last night to pick raspberries but decided to wait for warmer weather.
Well the time has come for our once a month stay at the hospital. Its been another mother already. Destiny will be checking in August 22nd around 12 or 1pm. It takes the pharmacy 2 to 4 hours to mix her medicine then she is hooked up to run anywhere from 8 to 11 hours depending on her weigh in weight. After the IVIg is done she will be given her evening meds then her evening does of cell ceph (chemo) then she will be hooked up to her TNP/Lipids for 30 hours she is attached to a pole and lines. She does ok but gets really bored having to stay in bed. I plan to pick up some McDonald's on the way in she loves fries and a bite of a hamburger only if she can wash it down with a glass of milk. For the last couple of months when she goes in I have balloons delivered to her she loves it. She goes a surprise for me- oh thank you mommy.
To see her gestures and hear her say that I just melt.
Destiny's brother is coming home tonight after being in California for 2 months and Destiny's cousin Jordan is moving back to Anchorage after living in California for 4 years. I mentioned this to Destiny and she goes my Alonzo and my Jordan are coming home I tell her yes and she jumps up and down yeah. My sister comes home next week Monday and I can not wait. She is moving home to be closer to the family and to help with Destiny. I never asked her to do this she just knew that what was need and I love her for that.
I will post as time and Destiny allows from the hospital the plan is to stay 3 to 5 days if needed. Last month she had a reaction please say an extra prayer during your day that she has no problems and just kicks butt to come home.
Wednesday August 28, 2002
This if the first time I have sat down to write since we arrived home today. It has been God's hand that has guided us through another passage. I am going to back track to fill in the past week to let you know and share with you my feelings.
Thursday August 22, 2002
As we are driving along the front of the hospital Destiny says mom here it is so I say Thank you lovely.
Then she puts a knive of kindness into my heart that made me cry.
As I pull into the parking garage Destiny puts her hands above her head and looks into my rearview mirror and goes " Yeah were home" how can my 2 1/2 almost 3 year old daughter be so happy to go and see her doctors and nurses in the hospital. Granted if we are not at home we are here I am very blessed for her to enjoy her stay and love her friends.
We arrived in our room by 3:20pm Destiny weighted in at 27.2 pounds 12.3 kilos and had labs drawn from her line. The nurse let the pharmacy knew we were there so they could start mixing our IVIg normally it is scheduled to be mixed in two hours but last month it took four hours so I said no problem we're not going anywhere. Little did I know I would be tested. Grammy came to the hospital around 6:20pm to stay with Destiny while I took Alonzo and Jordan bowling for a couple of hours. Upon my return to the hospital around 10pm the IVIg had not started yet. The pharmacy had barely sent up the IVIg and the cell ceph at the same time questioning the doctor which to run first he choose the cell ceph first then the IVIG. So we begin with the evening meds first then the cell ceph Destiny is sleeping it finishes we run the IVIg which ran for 8 hours this month which finished around 9am so now we need to run the evening TPN/Lipids for 8 hours. So guess what time it is evening meds then the cell ceph now ther TPN/Lipids for the evening by 6 am friday morning Destiny is vomiting very hard and it is dark green I am a little concerned but know they are watching her.
Friday August 23, 2002
Destiny has started to run a fever 101.0 this is not good by 10am Destiny is very sick from vomiting time after time. I notify the nurse she is not to have any more liquids and we offer her a popsicle or ice this does not help and she continues to be sick now its from both ends. She is crying everytime I change her and her stomach hurts so much I ache for her knowing the pain she is going through. Today's weight is 12.2 kilos. I am holding Destiny in bed when the doctor and echo tech come in the door, I can see the look on the doctors face as he keeps asking to see an certain area over a couple of times I know something is going on by his face and what I feel in my stomach. Afterwards Dr. Wellmann mentions he is concerned about the tricupsid valve well I know after many echo's and learning about her heart this is the valve that has not had trouble to my knowledge. The doctor is going to make an adjustment in her enalapril and her TNP. Destiny is not herself she is in and out of sleep all day. I am worried just before I go to sleep I sit down and pray for a while.
Saturday August 24, 2002
Destiny weights 12.1 kilos today. Destiny is still sick with a fever, and both ends still running. Dr. Wellmann came in a little after 9am I inform him of the temperature I ask if it is an infection if we could redraw a CBC or CMP to check her blood levels for infection just to be save at that point he lets me know he looked at the echo from yesteday and with the concern he has he said we need to go back to the unit (PICU) I hang my shoulders because I knew in my heart what that meant monitors and lines hooked up along with O2 ( oxygen) Destiny is allergic to the glue that is on the leads and she has to have them. After the doctors leaves nothing like a good morning, I borrow a hospital volunteer to go and take a quick shower before we move I come back and the nurses have started to help me pack up my stuff. No this is no small task since I bring my air mattress, and pump and dress up clothes for Destiny along with puzzle, crayons and books, stickers, and you name I have plus my stuff for me. We head home to room 307 the nurses are waiting for us we are right across from the nurse's station which is good but I have choosen to close the curtain for some privacy. Destiny has once again slept all day off and on she is really sweaty and I know that is not good because then her heart is working harder the doctor has ordered her to be put back on Dobutamine to help her heart with the fluids that have been ran since our admit. Grammy comes up to visit for a while and I need to go to the store for a few items not to mention how I need some fresh air the last time I left the hospital was thursday. So I ran over to Fred Meyer and grab some socks that are on sale.
Sunday August 25, 2002
Today Destiny's weight is 12.1 kilos she is starting to recover but does not have the strenght to do much. She is still running a low grade fever. Late in the afternoon I have had enough of our room and ask Destiny if she would like to take a walk- YEAH a walk mommy yes, so I ask the doctor and let the nurse know I am disconnecting everying and will silence the alarm. Destiny does 1 1/2 laps and is ready to go back to her room and rest. This if the first time she has wanted to eat and is asking for food so I am feeding her little bites at a time. She is starting to come around she looks better and able to stay awake for hours at time now. Thank you God, I know you have sent your holly spirit down to help this child of yours each and every day. I know you walk with us hand in hand each step we take as I lean on you for guidance and strenght to get through everyday. I know in my heart this is where we need to be and I have packed and prepared myself for this stay. I am wondering if we will be able to continue the IVIg since Destiny is having reaction to it for the last two months now.
Dr. Wellmann says we will retest her PRA in two weeks.
Monday August 26, 2002
I woke up to Destiny's alarms beeping, and beeping for seems like hours but in reality was 5 minutes. I have sat down many times and asked the Lord for help but today I feel I need to be soaked in prayer. Dr. Wellmann is up in Barrow today but his partner in the office Dr. Brauner will stop and check in on Destiny later. Dr. Brauner is glad to see that Destiny is doing much better she gave Dr. Wellmann a scare there over the weekend. Destiny is asking for food and wants to get up and walk. WE decided it was time to play dress up so the first outfit was tutu Destiny just ate up the attention she received from the nurses and staff then we went back to our room to change into stinkerbell and once again she hammed it up I tryed to get her to put on her Little Mermaid outfit and she does not like she told me so I will be giving that one away. The local tech for Medtronics will be coming to the hospital to do a pacer check tomorrow the one machine here at the hospital was having a brain fart when Dr. Wellmann tryed to use it.
Tuesday August 27, 2002
I am going to catch some sleep and will you in on the rest tomorrow.
God Bless and good night,
Thursday August 29, 2002
Well we given the ok to come home yesterday as you may have read I was given instructions if Destiny spikes a fever of 100.0 we need to go back to the hospital to run antibotics. The blood work showed no sign of infection but we still have to keep an eye on it. Her white blood cell count is down some so we just need to take that extra step. Here is the plan as of yesterday 8/28/02 we are going to retest her PRA if the numbers are high in the 90's still we are done. The doctors here and at Stanford have tryed all they can. I would rather keep Destiny as healthy as we can for as long as we can then to send her into the Operating room and say good bye. If her number are down we still continue to the run the IVIg but will have to start out in the PICU to run Dobutamine to help her heart before the fluids can ran through her system plus she will be put on O2 ( oxygen) with this help her heart does not have to work as hard. As much as I grumble I feel better to have her hooked up to the monitors and knowing the nurses are only 10 feet away.
Friday August 30, 2002
I have had time to catch up on some needed sleep. Destiny is just wonderful she is having great days here at home we still have to watch the urping but thats part of our routine. I called Dr. Wellmann today to ask about the PRA test what type of difference are we looking for 3 to 5 points he suggested 7 to 10 points would show a great change. I am looking at having our nurse draw the labs on thursday September 5th. Then we wait nothing I haven't been doing. But I am Thank to God for giving me another day with my family and my children. I do not question what is going to happen I am learning to enjoy life. My sister is how and we are all tickled, Destiny follows her cousin Jordan around like his shadow. Many things have come about with them home Destiny is snacking more and wants to eat when Jordan eats if we could get her to enough to take her off the Lipids at night it would sure give her liver a rest. I have come to a decision to go ahead and have a fund raiser for Destiny I am thinking about having a rollerskating party then I could put her in her stroller and spin her around the rink with me. A friend of my is a radio DJ for one of the local channels here, I asked if he would come and help with announcement and being our voice over the PA system he would love to. I don't have all the details to my plan yet just a suggestion at this time. It all depends on the next results of the PRA if the levels are down I can not take the chance of her getting sick and being around alot of people in an enclosed. Also I plan to call the local news station KTUU ask Steve MacDonald to come and do an update since our last incounter was at Children's Miralce Network. At that time we were unknown about the PRA test.
Thank you for all the prayers, and support during this trial in our live. GOD BLESS YOU ALL.
Destiny's Daily Journal
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