June's Daily Journal

Friday October 11, 2002
I am telling you if you ever decide to move your furniture around make sure you mark your cables to put them back into the right place. I moved stuff last weekend then I had to call the company to come back out and rehook up mess. So much has happen so I will go back and update.
I spoke with Dr. Wellmann Wednesday 10/2/02 about Destiny is getting knots in her tummy from her injection so we went over a couple other questions and answers he mentioned he would like to bring in the hospital to run Dobutamine to help her heart. This medicine can be given only in the hospital to monitor her well it happens to work out that my doctor I work for will be out of town 10/10/ adn 10/11 then we have the weekend. I said lets admit her next week wednesday 10/9/02 that would work in both of our schedules. Wednesday 10/9/02 Destiny, my sister and I left for the hospital all packed stopped at McDonalds for hamburger and fries. We get there Destiny goes right into Dr. Wellmann's arms to be held so he carries her down to her room which happens to be Room 309 WOW 38 days we spent in this room and were back but we have a great view we are close to the main door and the location is great for the family. Destiny's weight today was 11.7 kilos she allows the nurse to take her blood pressure and put the leads on her back no problem piece of cake then the nurse brings in the oxgyen and she come out of her skin screaming and kicking she asked No later mom, later. My sister holds her body I hold her head and put the stickers on her face really fast while the nurse is trying to put the oxygen on and have it stay in her nose she wants nothing to do with this she makes herself sick twice thinking we will stop the unit is so quite there are only three kids and Destiny is number three. You can hear the screams just bounce off the walls my eyes are brimming with tears for her I choke them back and tell her its ok and it will be over in just a minute. Once the nurse finishes and steps and Destiny stops crying as if it never happened. Now we are pasted that moment she is laughing and calling the nurses she is just cracking everyone up who will stop. I have to say this for everything that goes on she hates having oxygen on it really dries out her nose plus its already dry in a hospital to begin with. Her medicines arrive hour by hour and she is now hooked up does that stop the jumping bean NO. So now its Thursday 10/10/02 Destiny has more engery I am pulling at my hair to keep her quite or sit still its nap time and she is screaming for her nurse Chris-- over and over and over again pretty loud so at one point Chris yells back just a minute the nurses crack up laughing. Chris is a male nurse new to the unit and Destiny has him hooked to answer when she calls already. We last had Chris in august when Destiny had a really rough night in the unit so I am glad to see we got him back for him to enjoy her and know what she is really like. I tell Destiny its nap time she needs to lay down. She continues to act out and and yell for whoever will answer so Chris gets on the intercom to the room and say "Your suppose to be taking a nap GO to sleep" Destiny does not know where this is coming from and who is saying it her eyes are wide open and she is on the verge of tears I hold her in my arms and show her where its coming from Chris comes into the room and Destiny goes right to him and scary. Destiny does not go down for a nap until 7pm that night and is up at 9 I let her watch a movie and we go to sleep shortly after its over. I am sound asleep Destiny woke up twice and wanted some water and went right back to sleep. This morning 10/11/02 my sister and nephew come in the room and are moving around with breakfast in hand before I even open my eyes. So no I am home to clean up my mess and try to get reorganized again. If that is at all possible. I have many calls to make I am in the middle of Destiny's insurnace capping out at the end of November and trying to get paperwork, approved and hire a case manager, care coordinator and keep working at home at at work and keep my peace of mind alot of prayer and a heart for the Lord I take one day and pile at a time. It will all work out I am not worried. I have found out that the Ronald McDonald house in Seattle is not done yet they have contracted with a hotel nearby to help provide rooms but I do not know how far it is I will make the call to find out. OK a change in subject the child Kyle from Eagle River is down in Seattle now please keep this family in your prayers Kyle has a brain tumor and the only child from his parents. There is another family I have gotten to know and he and his wife will heading to Seattle for the husband to receive a Stem Cell treatment I do not know what type of cancer he has but they have three children who will stay in Anchorage with family. Ok that is what is going on nothing big. I have called Destiny being in hospital a lube oil and filter change she is full of herself and has more engery at this moment then most of us can keep up with Dr. Wellmann says we should do this every month to help her heart I feel its like her heart works triple time and once she is put on the Dobutamine her heart is only needing to work overtime. What a difference. My sister is there now at the hospital I have to get busy in the house or I will be mad at myself to be given this time and not get much done. My love to all of you and know you prayers are heard.

Sunday October 13, 2002
We are home Destiny is sound asleep and I am going to update for a few minutes then start unpacking I take TOOOOOO much stuff to the hospital: clothes for both of us, stickers, movies, markers, crayons, coloring books, books, toys, trains, planes, and automobilies so after I update I need to get something done in my house. Everything went well we are going to plan another "Tune UP" in three weeks around November 13th and stay 3 to 5 days to hook her up to Dobutamine and oxygen and make adjustments to her daily meds this way Dr. Wellmann can see her and check things out before his wedding he will gone for three weeks on his honeymoon afterwards so we are going to have follows ups before he leaves then if we need we can see Dr. Bauner in the office. It seems to me Dr. Wellmann has cleared off his plate from what the Lord gives each of us because he was himself and I have not spoken to this side for months. Praise God. Life deals us all to much at time but when you ask the Lord for help he will help with one item at a time believe me I know Do You? With us in the hospital I made changes in her birthday party instead of going bowling we are Rollerskating I will be able to put Destiny in her stroller and take her around with her mask on and her hands in the air. She is looking forward to it as the rest of us we are planning to take lots and lots of pictures soon I will have a slide images of the hospital stays each month from May to October and then finish that up and get on of her party. I ordered a banner last year that says "Happy Birthday" with her full name on it its huge. Well I need to get busy in the house. God bless each of you on your own road you travel. Love Ruth and family.

Monday October 14, 2002
Well it is a crisp morning today here in Anchorage. Soon we will be covered in that white stuff I'm not saying the 'S" word not yet. Destiny sleft in yesterday until 11am she needed the rest she comes home and needs to catch up on sleep for her going to the hospital is play time she yells for anybody to come and play. We made our party bags last night I printed party favors as well at one point I ordered pens that say Don't take your organs to heaven - Donate and then I have her webpage on them but I have not received them yet I will need to call on them later today. I was able to get alot done around the house and even go grocery shopping at Sam's club now that was something else with Alaskan's receiving there dividends people are shopping and buying like mad right now. I forgot all about that until I got to the parking lot and talked myself into going in the store it took 2 hours to buy, pay for and get out safe Destiny loves to go shopping as much as I want to take her all the time I have to becareful for people with cell phones the 2 way radios so this is a once a month treat. Today is a new day and we plan to make the best of it. Be safe when your driving and know we are thinking about you. Sanchez Familia

October 16, 2002
Well I was trying to download the birthday party pictures from rollerskating but I happened to have a bad disc I was only able to get the first four pictures much to my dismay I was mad as a hcat on a hot tin roof - then I gathered my thoughts and asked God why I was not able to have those pictures and realized there must be a reason it is not for me to be mad but to except it and develope the pictures taken by the other two cameras and ask for those who attended if we can have a copy of there pictures. There will be other pictures that I take anyway tomorrow is the real day of " Olivia DestinyMarie turns 3" Destiny had a blast at her party the roller rink provides a kangaroo to come out Destiny came unglued stick to me like a bandaid but as soon as this roo was 7 feet away she waved bye and it was ok then. One of the nurses from PICU Yvette her husband and boys joined us that evening her husband went home and put on a TIGGER outfit for Destiny and she loved it. At first she was scared but she could see his face and that made a difference. By the time we left she was sound asleep she wore herself out as a matter of fact by tuesday morning she slept in until 11 am. I will let you know how tomorrow goes and what we do. Good night

Thursday October 17th
Today is the day the angels got together and decided to create a dream come true "Olivia DestinyMarie" turns 3. Stand up and shout YEAH. To know the doctors told me in May they have done all they can do Praise God we have this day to celebrate today is a Gift of life. Destiny received her first hair cut today it looks so cute and she loves it. She is not potty trained but today was yet another milestone she asked to sit on the potty when she had to go. I am overjoyed with emotions today I want to thank all of you for your support, your love, and prayers you mean the world to us and I am given so much by knowing you are there listening, reading and responding. All of our prayers are being heard what you give to us is far beyond a thank you I would be jello without all of you. I want everyone to know my family means everything to me to us knowing you are there at all times of the day or night to all the friends we have met along this journey know how dear and close to our hearts you are to us it is more then friendship you are a part of our familia. Give someone a hug to let them know you care or were thinking of them today. Thank you is what I can write but know it comes from the heart. I received a quote today from our gift angel Konni today and I am going to borrow it.
It takes a minutes to find a special person,
an hour to appreciate them, a day to love them,
but an entire life to forget themm.

Thursday October 24, 2002
Well I am taking a moment to write for a few minutes. I first would like to thank all of you for the birthday cards send to Destiny she loves them. For those of you who send special gifts thank you as well she even received a gift from England- WOW. Destiny is going really good keeping everyone else in the house busy. Our friends from Eagle River are home for a short visit but will be heading back down to Seattle for treatment Kyle and his parents will be staying at the Ronald McDonald house our prayers go with them daily. We are proud to announce that George and Trista Stockwell are the new parents of a healthy baby girl Haley Joan born 10/21/02 8 pounds 4 ounces and 21 inches long her older brother Shaun was released from the Providence hospital on monday night from the PICU from there they went to one of the other hospitals for Trista to have our new bundle of joy. Destiny sent the children some balloons and colored M&M's did you know there are some stores that sell all 21 different colors? I always order certain colors whenever we go to the hospital I order pink, red and white. I can not believe it almost the end of October. I do not celebrate Halloween and do not say much to those who do we all feel different about it but the doctor I work for his wife did a great job decorating our office with cool cobwebs and alot of other items. I am in the middle of alot of paperwork, contact with different offices and more paperwork to keep Destiny with insurance. Up to last night my journey down my road was ok but last night I hit a road block I did not have a nurse show up at the house to do evening medicines or hook her up to her pumps now don't get me wrong I know how to do all of this I was up at 5:30am out of the house by 6:35am and did not return from Eagle River until 6:00 pm I was exhausted to say the least I tryed three times to draw the correct amount of medicine after shutting down I was able to get everything done and right to sleep we went. This is the third time in a two months period I have had no nurse I am only questioned to ask if this is worth it or if I am do this everyday myself. The pharmacy I work with is not able to find a automatic blood pressure cuff small enough for me to do this at home and trying to take a blood pressure is unforgiving to me I would rather hear nails down a chalkboard then to learn to do this. I just have been given an extra serving and need to clear my plate. We are planning another hospital stay November 13th. I will keep you posted. I feel like I am to spend time cleaning my plate and turning it over to the Lord and less time on the computer. As time allows and as news hits the stands I will post messages. Our love to you all thank you for letting me vent.

Friday October 25, 2002
Just as I let my guard down I am thrown back into going to the hospital. Destiny took a short evening nap upon waking up she had a shriver at first I thought she just got up then after sitting down to hold her I realized she was burning up with a fever so I quickly took her temp its was 102. I called the PICU to ask who is on duty and Dr. Brauner was in the unit he asked what I wanted to do I said I would feel better if I brought her in he was going to call the the emergency room doctor to let them know we were coming in. Dr. Brauner was going to have a chest xray taken and blood tests. I got things together here at the house it was 8:20pm and Destiny is due for evening meds soon so we grabbed the TPN/Lipids, lasix, and digoxin, flushes and syringes and we were off. Upon our arrival at the emergency there were 3 people in front of us I went up to the window and said I have Destiny Sanchez hear who is a cardic patient one nurse tells me you'll have to wait I said Dr. Brauner called down to the emergency doctor to let them know we were coming in the nurse says you'll have to wait so I claimly go sit away from everyone my sister is telling me it will be ok they will get us in there. I am foaming at the mouth fianlly our name is called the admitting person is slow actually by the looks and by the delay of processing she has to be a new hirer I am beyond the point of asking do you want me to do the admitting and type in all the information but I did not push her out of the way I sat there said another prayer - Please Lord don't let her suffer. Which seems like hours was only under 1 hour that we got a bed by now Destiny's temp is taken rectal its not 102.5 I know that anybody that has a high fever you need to be careful and watch I am over protective with all of her cardic problems I also know that Dr. Wellmann has said if Destiny gets a fever 100.0 to call so I did and now I am waiting. The xray tech comes in I look at her and said I am going to sit with Destiny I am not leaving the room nor am I having anymore children the tech looks at my sister and asks her to step out while she takes a xray. The male nurse comes in to flush her lines and draw blood they are going to run a CBC/CMP I suggest the red/white line because we have not had trouble drawing from it before. So I have Destiny lay down on her back the nurse flushes 10 CC of normal saline and then trys to draw back nothing so he flushes the line and he flushes the second line at first Destiny is laying down and then I have her sit up the blood flows into the syringe he finishes get all he needs then flushes with normal saline afterwards I inform him I am going to run meds while we wait. I am waiting for the doctor I feel like anyday then I told my sister I should have done a direct admit back to the unit and not worry about this hassel. The doctor tells me her labs came back everything looks good so he is going to suggest she has a viral infection take tylenol every 4 hours and motrin every 6 hours to help the fever I sign the discharge papers and head home I don't feel comfortable about this but they treated us like and sent us home. So now its like 3:30am and Destiny is burning with fever its actually 103. I just up grab the phone and call the charge nurse in the unit PICU. She suggests to use a cool wash cloth and keep it placed on her forehead try to cool her off. I asked what I need to do I am in overdrive and all I can think of is her breathing so heavy and her heart working harder then it needs to. The nurse reminds me to have her drink plenty of fluids. I hang up Destiny has been sick off and on between the hours of 3am to 5:45am So I am going to be taking her back to the hospital and will keep you posted. Please say an extra prayer that this fever runs it course and there is nothing to worry about.

Saturday October 26, 2002
Well we went to the hospital Destiny has a infection they are running blood samples to see how much is in her body she is admitted to the PICU and will stay for 3 to 4 days the blood samples are tested 24 & 36 hours they started her medicine to help she is hooked up to oxygen and Dobutamine I need to run back to the hospital just came home to get some clothes I will post on later. Destiny is in good spirits and doing better. -much love from US. I wanted to let you know when I got to the hospital Dr. Wellmann asked if I have spoken to Trista not since Wednesday. Well Shawn was admitted back to the unit Friday morning they will be able to go homee sunday. You spend so much time there you have strong friendships with the nurses and doctors I have a special place in our heart for children and there families for heart conditions other families become a part of your family you have so much in common. Every child is different with his or her own medicial needs but a family with a sick child can relate to the in's and out's of a long hospital stay. I am glad to have the Mosley's and Stockwell's a part of my family. I want you to know how strong I think Trista is here she is with a 5 day old Haley in bed with Shawn. A mom just does what needs to be done like a robot when it comes time to taking care of a sick one. I don't even think about it I know it has to be done because a special little life depends on it. Keep these families and any others you know in prayer everyone needs the prayer. Kyle Atler and his dad will be heading back to Seattle to begin his radiation add them to your nighty or daily prayers as well. Thank you to all and to all a good night

Monday October 28, 2002
Well today I went to work for a while I felt like I was in a haze all day. Destiny's fever broke last night. The charge nurse and one of the other nurses Paula set up a room with a bed for me to sleep last night I slept over 6 hours I did not know what to do this morning. I need to ask all of you for heavy prayer over Destiny she is really restless at night and some nights jerks awake with the fever down her breathing is slow but at times she is breathing so hard and fast I panic. At this point we will be staying a couple of more days hooked up with all the medicines, oxgyen and dobutamaine. When we are able to come the antibotics will run for another two weeks at home. Destiny was a very sick little girl when she was admitted I did not get much sleep friday and saturday night. I praise God for allowing Paula to be working I asked her to sit down and pray over Destiny with me. I am really pulling at my heart strings right now because I don't want Destiny to suffer in anyway. She is talking, laughing and sometime arguing in her sleep. I can not ask you all enough to sit down and pray. Please not keep our family soaked in prayer to help us fight for recovery. My sister stayed with Destiny during the day so I could finish up at work to be able to come home and get out for a couple of hours. We watch movie after movie Destiny is just getting the engery to watch one and not be so tired she is not allowed to leave her room just yet to walk around but I will ask for tomorrow. I am going to drive on over to hospital now. Thank you for helping your prayers are being heard. I will try to sneak out tomorrow while she sleeps if not I will update when the time allows. God Bless and Good Night,

Tuesday October 29, 2002
Do you believe in the power of prayer???? Destiny has come home from the hospital. We will continue the medicines for 3 weeks then go back in to test the blood and run Dobutamine 11/20/02 and stay a couple of days. I could feel the prayers the armor that was given. Destiny is a walking miracle each and every day of life. Once again she has had the strenght to fight the angel for death. PRAISE GOD I know that none of this would be possible without him. We came home and Destiny has been resting most of the afternoon. It will take her a couple of days to catch up on sleep and get back on schedule. Can you hear the moutains tremble when you witness what can be done when you ask the Lord and pray. I want you to all know how much it means that I can sit here and type when I need to let you know what is going on this is how I can reach all of you without calling everyone of you. I am going to go put all the rest of my stuff away and get ready for work tomorrow. Todays going home weight with all her clothes, shoes and lines attached 11.9 kilos.

Wednesday October 30, 2002
I am sitting here my heart is breaking for Destiny she has such a diaper rash from the antibiotics she is on. I can handle changing the dressing on her central line I can draw up all her meds, flush the lines, change the tips, I could even remove stitches if I had too but to hear Destiny scream when she is raw and know I have to wipe and put bum cream as she is screaming I can't do this. I am the one in need of prayer at this time we have three weeks of antibiotics and she has a little red bum bright as clifford the big red dog. I need to get some sleep but needed to ask for your prayers for this covering and allow the three weeks to go by.

October 31, 2002
Another one bites the dust- the end of another month gone by. I was listening to the radio the other day when the man said so many people (Christians do not pass out candy) he said instead of turning out the light turn on the light and passout something that says "Jesus Loves You" something along this line after I got to thinking about it he was right what better night to spread the word of GOD by something the kids will have or read or even play with. Destiny had a better days today she is caughting up on her sleep and ready to rumble by the time I come home from work. Today I called Dr. Wellmann about her bum to ask for help or would I should use he called back and gave a few ideas. I let Destiny go without a diaper for a while she was wearing her panties then she got up and walked into the bathroom and piddle in her panties then got all upset. The nurse Wendie was here tonight and once again I had her diaper off and she peed on the carpet and got mad at me go firgure.
I had a message on our machine that Make A Wish would like to have Destiny in there calendar I will call them back tomorrow and find out the details and will keep all of you posted. Seeing how it is 11:37 pm I need to catch a few zzzzzzz's.Good Night

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