Saturday June 1, 2002
Destiny is raising the head of her bed and sliding down thinking this is a blast. Today is the beginning of Children's Miracle Network on KTUU. Destiny was interviewed with her mom which has ran three times today since 6:30pm. KTUU also showed a video of the photos we took on our helicopter ride and interview we did 5/10/02 we plan to get a extra copy
of this tape for Destiny to watch herself on tv.
Wednesday June 5, 2002
Destiny has now been in the hospital for one month straight. She has actually bulked up a bit being in the hospital. 11.5 kilos on an average day. She is still having trouble keeping her food down for every meal.Destinys weight today is 11.4 kilos
Thursday June 6, 2002
They have sent word up from Stanford that they want us to start Destiny on a new drug called mycophenolate mofetil. It is a drug generally given to patients after they have had a transpant to help keep them from regecting their new organ. This drug when given to Destiny will deplete her immune system and so we will all have to be very careful not to pass on any germs or infections to her. They have decided to wait till Monday before giving her this new drug and they will also do her blood work (to check her antibodies) on Monday before she begins her new treatments.Todays weight is 11.6 kilos
Friday June 7, 2002
Destiny will start with her lovenox shots tonight at 10 pm these are given in the stomach with alternate sites and scheduled twice a day. This is a blood thinner called heparin. These are to be given until the transplation. The doctors are also running a allergy test to see if Destiny has a latex allergy. She has 16 patches on her back taped down and numbered. Good thing she does not see this. Todays weight is 11.6 kilos
Saturday June 8, 2002
Destiny's tummy looks like a pin cushion, you can tell where each injection is given. She knows what is going on when the nurses put a numbing cream on her, everyone comes in for distractions but it does not work as soon as the alcohol swab is put on her stomach her knows. The most is incredible part of this is when they are done Destiny will say "all done" and the nurses will answer yes she stops crying and sits up half smiles and waves to the nurse sometimes as they leave the room. What in incredible spirit Destiny has to go through so much and keep fighting everyday to bring so much life into everyone she meets. Thank GOD for every moment and memory we are given. Todays weight is 11.8 kilos
Monday June 10, 2002
Destiny started the medicine called mycophenolate mofetil the first dose was by mouth which was urped after being put in her mouth, so plan B was put into action to give her the medicine by IV. After the med ran for 2 hours Destiny is doing well and is having no reactions.
Todays weight is 11.7 kilos.
Tuesday June 11, 2002
Destiny is to receive this new med every 12 hours. She is being evaluted today for PT- physical therapy and OT- occupational therapy. After spending 37 days in bed I'd be stiff too. Destiny is very sleepy today.
Todays weight is 11.5 kilos.
Wednesday June 12, 2002
Destiny seems to be tired after each treatment and take a 2 1/2 to 3 hour nap afterwards. She will need PT anywhere from 4 to 5 days a weeks we are calling this playtime the plan is to also have food time to get
Destiny to eat. She is not able to keep food down at
this time and has urped twice day.We received news that the blood samples they took saturday night to mail to Stanford to test the PRA levels are still at Providence hospital. I was not to happy for a while.
Destiny had a restless night. Todays weight is 11.8 kilos.
Thursday June 13, 2002
Destiny and I are told there is talk in the hosptial that the doctors are looking at sending us home in the next week. Destiny will be going home with all of her meds in IV form and pumps to help give them. Here are some of the meds needed Lipids which is a bottle of 20% fat and TPN (total parenteral nurtrition) allowing all but 4 meds to given through the IV lines and 1 shot to be given twice daily. The hospital is setting up a nursing schedule to have someone at home to give these and provide some help for me. I will not be returning to work for a while my place is to be with Destiny.
Destiny's PT will also be able to be done at home which is great. Todays weight is 11.5 kilos.
Friday June 14, 2002
Destiny had a very BAD morning
Today I should not sit down to write at the moment.
After spending 38 3/4 days in PICU we were woke up a little after 6am to say Destiny has graduated we are moving you to the regular PEDS floor and we need the room now. Destiny wakes up to noise in her room, people talking and taking her stuff down piling some of her bed and alot onto carts and being put in bags to be moved down the hall. She is scared, trembling and shaking so bad she won't even let me move my arm to a new position. Through all the tribulation and trials we have face this was hard to handle. Today I feel like Jonah in the whale's stomach.
Saturday June 15, 2002
Destiny has been in the hospital for 40 days and 40 LONG nights. I share a insight to Noah and his family on the Ark at least I was able to have something different to eat daily and get out the hospital.
God has blessed us in so many ways that as upset I was yesterday Destiny puts her arms around my neck-
says, "I love you" pulls away to smile giving me the courage to face the next day and to let me know everything is ok. Her sprit is forgiving to everyone no matter what is going on. Have you ever heard the saying
"Your eyes are the window to your soul" this is so true your able to see the light in her eyes.
Destiny painted today with blue paint with grammy.
Sunday June 16, 2002
Destiny gave her papa a picture of herself today for Father's Day. I caught a moment of Destiny and her papa walking down the hospital hall by themselves. We put big brother Alonzo on a plane to Rio Vista, CA last night to go visit and get away from the hospital scene. I want to thank my dad for all the memories he brings to our family you are trully the backbone which holds us all close.
Monday June 17, 2002
Destiny has a care conference scheduled for 6/19/02 @12:30pm. This includes everyone involved in her care doctors, PT's, pharmacy, diet/nutrition, social worker, myself you get the idea. We are also planning to try and go home on 6/19/02. Dr. Wellmann plans to do an echo and pacer check tomorrow.
Tuesday June 18, 2002
Destiny did a great job during her pacer check, the output was lowered and the battery was adjusted to 17 months of battery life this is a big blessing since in March after the cardic failure the output was so set to the highest setting it only had 9 months of battery. Praise GOD. Her heart functions look better but she is in need of a transplant we are waiting to hear from Stanford about the last blood test to check her antibodies.
Wednesday June 19, 2002
Destiny's care conference went well everyone had their input to the care and home care we will be getting. We will not go home today we will retry on 6/21/02. The meeting was informative we were given three options,
1. Bring Destiny back to the hospital daily for her treatments and wait the two hours for this drug to run
2. Bring Destiny to the hospital just to pick up this drug and start it at home
3. To have someone come and pick it up daily at the hospital then bring it to our house.
We are trying to work out a schedule to have a home health nurse come to our house to help with the meds
and the care of Destiny at home.
In order for this to work for Destiny it was suggested to have the meds delivered to our house. Which makes me feel better because then we don't have to expose her to the critters of sick children and adult. What a good place for most people is the hospital however for a child with who's immune system is weak is not a good plan.
Thursday June 20, 2002
Destiny had a good day at PT she got to go on the swing she that was pretty cool she gave two thumbs up and you know that rates. Destiny's morning are slow she does not get going or show any interest in anyone until about 1 to 2 pm with the mycophenolate mofetil (cell ceph) she runs low on energy. Dr. Wellmann has suggested running the IVIg drug again tomorrow this is what we ran on 5/23/02. I have a feeling we will not be going home tomorrow the last time this ran it was over 6 hours and she still gets two doses of cell ceph daily which run for 2 hours each time.
Friday June 21, 2002
Destiny was a bear all day no smiles for anyone I even had to work to get one. We called her papa and grandma at home to leave a message and I asked her if she wanted to say hi, NO!!!!!!! is what she yelled. She sat like grumpy with her arms crossed. What a face! Thank God I love her so much. We are not going home with the volume of fluid and meds going through her today it is best we stay, we will try this weekend but a better chance next week. We were able to work a schedule for our nursing and have it all approved we will have 4 hours of nursing in the morning and 4 hours at night. Now we have to set up the training and get all the supplies ordered I feel better about going home during the week and not a weekend in case I need someone to call. Dr. Brauner and Dr. Jolley are talking about Destiny have a J tube placed in her intestines to help with feedings. This would be better for feedings but she would have to put under for surgery this can not be done with a local. There are many risk involved with the heart but it would be easier on her system especially her liver. Her liver is enlarged and the levels are high due the TPN, Lipids, and cell ceph going through daily at a high rate and dose. This placement would bypass her stomach so she would not be throwing up her meds as she did with her NG tube. I am really thoughtless at the moment I do not want her to suffer in anyway. Alot of prayer time to work this one out.
Saturday June 22, 2002
Destiny had a great day she is happy and full of herself today. I went back to the hospital after a great night of sleep in my own bed -
Thank You grammy for allowing me the time on your days off. I happen to interrupt the play time of the two of them making pancakes with butter and syrup with play dough. Destiny went for a couple of walks today and she and grammy even had a pinic in the hospital in front of the fish tank. Destiny told me all about Tiny and the kissing fish. I think now I will get her a gold fish or two when she gets home. After running
so much fluid through her she looks huge- todays weight is 13.1 kilos. I have to say for the first time she looks fat, she is a solid little chunk. I will have to buy clothes that are a size 3 for once in her life they will fit her now. Dr. Jolley came by today while I was home and talked with grammy IF they do surgery it will wait for 3 to 4 weeks so they can send
Destiny home for a while and get her out of the hospital. Dr. Jolley will be in monday to look at the central line in Destiny's chest while I was changing the dressing on friday the site is still oozing a little it had me concerned enough to have him take a look at it on monday. The dressing is being changed every monday and friday since the placement on 5/28/02. Dr. Bryant has suggested to us that if we need anything at home that he or his wife Beth can bring it that they would happy to do so, he would even make a house call if I thought she may have an ear infection he would stop by our house so we would not have to come to the hospital. I feel so blessed to have so many people caring for Destiny and taking good care of her family too. I need to mention to all of you the doctor I work for Dr. Kenneth M. and his wife Nancy Eberle of Alaska Orthodontics is allowing me this time off of work he is going to hold my job for when I am able to return I have not worked since 5/2/02, he and his wife have offered their airlines miles to help me out once we get to Stanford to bring my family down. This is incredible for me actually to all of us. I thank you all for the support you give us through prayer. Destiny is a miracle look at all the lives she is touching not to mention all the people she has brought back to GOD. We have not heard from Stanford yet it will happen in God's timing not mine and I have to remember that.
Sunday June 23, 2002
Destiny had a restless night she woke up with a fever at 6:30 am the nurse called the doctor that minutes to let him know. The doctor ordered blood test to see what type of infection she may have, this test will
take three days to get the results. I do believe we will not be going home 6/24/02 as ready as I am to go home I am overwhelmed -I know the will of God will not lead me where the grace of God can not keep me. I am where I am suppose to be daily. At this point we might as well stay until the 4th of July and hit all the other summer celebration- Mother's Day, grammy's birthday, Father's Day, my birthday then if we are able to postpone any surgeries we could come back for Labor Day. I know bad sense of humor but I need to find some somewhere. I am concerned about the amount of weight that is being put on Destiny's body daily, the doctors say its ok but I have that mother feeling in my stomach whenever I look at her. Today when I came into the room Destiny's face has little spots on her cheeks not chicken pox but its from the anticoagulant medicine when she urps it is causing the blood vessels in her face to expand more. Don't worry I took my daily picture as I do with everything and everyday.
Monday June 24, 2002
Destiny was woke up today at 8am when Dr. Jolley came to check the central line in her chest, he also removed the stitch that was on the line and not attacted to her skin anymore. Dr. Jolley said everything looks good and we will see him at out next appointment 7/3/02 @ 3:30pm. He also suggested how to put a different chevron on the dressing. All these medical terms I have become familiar with my brain is on overload it all I talk now but then again its all I hear. You know the saying if your going to walk the walk then you have to have the talk. I do not always get time everyday to update the website as most of you noticed I am trying to come down when my peanut is sleeping. Todays weight is 13 kilos.
P.S.
Dr. Wellmann came to see us at 6:30pm he has heard from Stanford Destiny's PRA test came back 95% it may sound good but the higher the numbers the more problems Destiny would have going into surgery with those numbers she would not make it out of the OR room. There is the plan we are going to try to go home tomorrow if the second blood test comes back negative. We are going to continue receiving the cell ceph (chemo) drug to help lower her antibodies and plan to retest in 2 to 3 weeks to give the cell ceph a month or close to a month of treatment and having two IVIg treatments so we wait some more. We just take things day by day and nothing more.
Tuesday June 25, 2002
DAY 50 we are going home Dr. Wellmann came into out room a little after 8am out blood work came back negative he has signed the papers were history, were out of here, but we are going to finish our cell ceph and morning meds before going. Grammy came to get us around 1:30 but it took the pharmacy until 3:37pm to get out 4 meds ready. Then while I am waiting with Destiny at the pharmacy this young girl walks in talking on her cell phone so I ask very nice if she will turn off the phone- all she can is WHAT- so I explain my daughter has a pacemaker and the cell phone can interfer with her pacer this young thing gets an attitude that she is only hear to pick up meds and has left kids in the car long story short--- please remember to turn off you cell phones anytime you enter into a hospital. You never know when a child or adult could have a pacemaker.
WOW I can not believe we are actually home it is kind of weird. We had our first nurse come to the house tonight to set up all her meds I am very impressed not only do we have a nurse but ALLLLLLL her meds and supplies were delivered to our house as well. Destiny is tired and ready for bed by 8pm after coming into the house she went to her stove to cook dinner all she can tell me is the batteries broken. Now I had a reason at one time not to replace batteries but seeing is how her toys are like new again I will cry uncle and go buy some new batteries. I will have more of chance to update our webpage and will keep you all posted to the status. Today's weight is 13 kilos.
Wednesday June 26, 2002
Destiny sleep go good last night in her own bed, boy it our house quite. We had our first nurse last night this program is going to work out great. She gave all the meds I get to love this baby and not be the bad guy. I am letting you all know if you ever need anytype of home nursing DO IT, we even have all of our supplies delivered to my house.
Thursday June 27, 2002
Destiny is tired and winded today she wants to run, jump and play but mom says no lets play on the floor and color. I am in heaven having the nursing staff come to my house with all her meds here. Way cool. We are doing alot of sleeping in and taking 3 hours naps in the afternoon when she sleep I sleep. The nurse comes in and I go back to sleep with Destiny. She is getting up between 11 and 11:30am she is wanting breakfast, snack, lunch, snack and some dinner. GREAT!
She is still urping thats ok in my book too. Destiny is taking to her evening nurse Karen with open arms. Grammy and papa have even offered to allow Karen to park her motorhome in our driveway instead of driving back and forth past Wasilla the 5 days she works here. She will become regular 4 to 5 days and nights a week. She was told by the Lord to come and take care of Destiny talk about revealation. Destiny is like jelly on toast with her which makes me feel good. I left grammy, Karen and Destiny here last night while I went to Kmart. I am going to start weighing my heavyweight daughter daily here at home but I do not know how different it will be from the hospital even the doctors office say something different.
Saturday June 29, 2002
Destiny went outside for a walk down our driveway today with Karen and myself. At first she wasn't to sure and said she was scared but after a squeeze and being told everything was ok she ventured to the end and came back. Karen gave her bath too. WOW!! When we went ot put her shoes on her feet she kept saying owie- she has not worn any shoes for 2 months but she was ready to go. Destiny has been eating here at home with no problems she is even asking for food then I give her something and she goes Thank you, Yummy and rubs her tummy. I think she's watched one to many Pooh Bear movies. Let me say it again what a blessing it is for us to have a nurse (actually a friend come into our lives) to help.
May's Daily Journal
Destiny's Daily Journal
contact@destinysakheart.info
