February 2, 2003
Can you see how incredible it in to watch another month begin this is my favorite month of all Christmas and Easter are special to witness and see the glory.
Valentine's Day is a "Day of Hearts" bringing awareness of Congenital Heart Defects. This month I am going to give alot of statics on heart defects just to let you know. Our Governor will be reading a proclamation on February 14th National Congenital Heart Defect Awareness Day both Dr. Wellmann and Dr. Brauner are hosting a day for heart patients and families to meet each other this is long overdue.
I would like for you all to know Destiny has a new favorite movie this week "Singing in the Rain" it is to funny to watch her watch the movie the part with the umbrella she also runs and gets her wanting to do what the tv is doing.
CHD- Congenital Heart Defects cause one or more portions of the heart to develop abnormally, absent, narrow or leaky heart valves and blood vessels, holes in the walls between chambers, transposed arteries and under development or total absence of one or more components are all possible. Join us in spreading the awareness for the Day of Hearts for those families you have meet or heard about for helping those when you know what is needed listen with you heart. The weather is kind of funny right now the other night we had ice rain I was better off putting on ice skate to go across the parking lot after leaving work on thursday then you have today the sun is out and its warm and beatiful. They say the groundhog saw his shadow and it will be another 6 weeks of winter for those of you in the states its anoter 3 months of winter here. By the time break up comes everybody needs a boat to get to work so ice skates now and a boat by April ok we'll take it. I am going to close for the night and will post in another couple days. My love to all of you for the support and strenght you give us to help me from day to day does not go unnoticed. To read your emails, cards and postings moves and touches us deeply. I know GOD has put everyone of you in our lives for a reason.
I want you to know when I say Thank you.
Saturday February 8, 2003
Hello everyone I am sitting down to let you know things are going ok. Destiny went to the doctor 2/5/03 for Dr. Scott and Dr. Jolley to check her central line to me it looks infected but I was told it wasn't we are changing the way we clean the site and stopped using tegaderm and betadine hoping this will stop Destiny from scratching her skin raw and me from changing her dressing once to twice a day like for the last three weeks that I have been doing. I not only worry about infection but more scared of ripping out the line more then anything. Destiny has been breathing a little heavier then I like I watch it more then ever she has always been a mouth breather but at times she can be sitting there and really working hard. While she is singing along with Singing in the Rain this week we are watching Stuart LIttle 2, for Valentine's day I plan to buy the first Stuart Little as well as special order a Veggie Tale the one where they sing God is better then the boogie man. Destiny is scheduled to go back to he "Doctor's house" 2/27 for a 72 hour stay for Dobutamine. I bought flour and sugar the other day and since then Destiny is asking if we are going to Trista's house to make cookies I told her not week but we will again, so tomorrow I am making a batch of cookie dough and trying a different buttercream frosting more like a chocolate buttercream frosting I am going to be baking cookies for the 14th for the big Day of Hearts celebration at the hospital. I plan to make chocolate hearts, chocolate chunk cookies with oatmeal and of course sugar cookies shaped like hearts with red, pink, and white frosting and different color sprinkles. YUM- Nothing like getting the kitchen aid out to do all the mixing. Well I am heading off to catch some zzz's I will catch you later.
Tonights information about Congenital Heart Defects are a lethal constellation of birth defects of the heart that affect millions of newborn infants and children worldwide; a killer that claims thousands of lives every year. Eight of every 1000 children born alive ( 0.8%) will have some form of heart defect.
32,000 babies with CHD every year in the U.S. alone.
Atleast 35 distinct forms recognized. About 1 million Americans with CHD alive today. Mortality from CHD is decreasing, but CHD incidence has not declined.
Good night and God Bless you all for being there.
Tuesday February 11, 2003
Well it is catch up time. On sunday 2/9/03 I followed my gut and went with what my heart was telling me I was watching Destiny's breathing it seemed to be increasing I took her temp and it was 99.3 I thought she is warm but I will put her down for a nap see if getting some rest will help her before we did we needed to call Auntie Jodie and Trista Stockwell, Destiny was bent on talking to both of them before I could past the living room so we called and I let them know how she was doing I would keep them posted to what I was going to do I already knew I would be calling it was just a matter of time to know when to call the doctor. Destiny woke up from her nap I gave her a half a hour for her body temp to come down when I took it was 100.1 that was it I called the unit PICU to let them know I would be coming in and I was going to page the doctor to let him know so I call Dr. Scott will meet us on the unit.
When we get there the nurse takes her temp is now 100.8 so I know she is fighting something serious they hook her up to the monitors, dobuatmine, they try to draw blood labs but the lines will not draw. I am thinking GREAT not this I gather my thoughts and we get Destiny settled at the doctor's house. Destiny is tired and does not want ot play or smile for any of the nurses at this point.
Today the Dr. Scott told me she has staph infection we are waiting for certain tests to come back to how bad this is we are taking all measurments to getting her healthy with the meds plus some extra ones too. I had Destiny put on oxgyen her O2 level has been around 95 which normally without oxgyen her level is close to 99 to 100%.
After hearing here is the worse case is the doctors will need to clear up the infection and place a new central line. We will be here a while I will post when I can don't worry no news is goods and if anything changes I will post ASAP to keep you all informed.
I ask you help in prayer for Destiny to eat something she would only take on bite of her sandwich today and refuses to eat. Her spirit if fighting and she is alert and willing to fight with me only. My love to all of you, Ruth
Grammy came to stay at the hospital so I came home to get some well needed sleep. Today one of friends went home to be with the Lord his name is Tyler he is 3 years old. My eyes are tired my heart breaks for this family keep them in prayer. As my days go by I will try to find some moments to update. Thank you for being there for us.
Wednesday February 13, 2003
I got to much sleep last night here at home, I work later this afternoon but did not go up to the hospital this morning it is harder on Destiny if I come in for a couple of hours and then leave but grammy did call to let met know they are going to put in a new IV site in her hand now this goes above gramdma duty. Grammy walks away here at home when I go to give her injections in her tummy how is my mom going to stay clam and hold Destiny down for a IV line in her hand I am preparing myself for when I go back today after work Destiny is going to feel real sorry for herself and act out when I get there I would almost bet grammy runs me over getting out of the door after I get there. I need to get clothes, toys and more movies to take tomorrow so I need to go for now I will post as soon as time allows- please keep Destiny in prayer that the infection will get under control and that she will eat.
Monday February 17, 2003
I have alot to type to get ready- the networking in the resource room at the hospital has been disconnected so I am unable to update the web page. Destiny is doing well and we are taking it one day at a time. Last wednedsay I got to work ready to start my day I had just clocked in listened to the answer machine heard a message from Dr. Wellmann to give him a call, I called his office he was not in there so I hang up and call the unit PICU he was brought to the phone and informed me that he and Dr. Jolley have talked and seen Destiny's central line "Hickman" needs to come out now the line is infected. Dr. Wellmann is needing my consent to do this as well as put in a pic line at her elbow and have it thread to the just above the heart my mind is overloading ---I start to cry wondering Who is going to do this Pic line he tells me Kitty who is his wife I ask why doesn't her nurse do it because you have to have specialized training, What are the chances of bleeding when they take the line out it is possible but they have things under control. When is this going to be done sooner the better he tells me. I told him this is above and beyond asking grammy to be there I am on my way. My cell phone is dead I can't call anybody to claim down I call Cindy to let her know then I call Trista to ask how good Kitty is- Trista said she got Shawn's on the first try to I calm down some but I am still worried.
I cry the whole way to the hospital and start praying really hard as I pull my car into a parking spot I just feel this claming to know it will be ok that this is god's will no matter what. After arriving in the room it takes another two hours before they even get started- Now had I been told to clam down and this procedure will take a while before we start I would have felt better and been more at ease.
Deep breathe in and exhale-
So it comes time to start they give Destiny a special lollipop with medicine in it to help her relax into a light sleep so she is going to town then she bites into it so they are able to get the pieces out of her mouth and have her finish the rest we are sitting here watching Destiny's eyelids getting heavier and heavier she lays back on her pillow but everytime someone opens her curtain she would sit up and ask What are you doing? Now she is no dummy she has 3 to 4 people walking in and out of her room they decide to stand with the curtain closed but she can still hear them talking and everytime somebody laughs she opens her eyes.
Three different times somebody would remove her lollipop once again she would sit up this time she would ask Where's my lollipop it would be given back to her. We waited and waited finally they gave her alot more medicine to help her sleep and put her under which Destiny is wide awake when Kitty starts putting in the line there are 4 people holding down a three year old Dr. Wellmann is no where around. Kitty finishes and calls in Dr. Jolley walks in and so does Dr. Wellmann I was beginning to wonder where he was, he called me saying this needs to be done now
Dr. Jolley orders more medicine to be given to help her maybe now she will go to sleep NOT going to happen Destiny is wanting to get up and have them stop Dr. Jolley injects medicine into the skin above the line with two pulls the line is free he cuts the tips to have it cultured and Destiny will remain on antibiotics which run three times a day. It took Destiny one hour after the procedure is done for her to finally crash for 3 and half hours. After 24 hours of the removal the site looks so much better.
By thursday we are talking about another surgery to put in a port to cath Dr. Jolley talks about risks, how the surgery will happen lenght of surgery, and answers all questions on sunday and monday the nurses will draw labs to check for infections if all goes correct we will have surgery tomorrow 2/18/03.
On friday 2/14/03 we go to the Day of Hearts Celebrations being held at the hospital from both Dr. Wellmann and Dr. Brauner the governor's wife comes and does the reading this was a big hit we were able to meet other cardic families. I was able to exchange my name and phone number for us to meet another time the hospital will sponsor a pinic in the summer for these families to get together and some time in the fall for one more time then the parents need to take over meeting after that. Destiny takes a picture with the governor's wife Nancy- she notices that Destiny's toenails are painted and thought that was so cute. Destiny is given an invitation to ride in the Fur Rondy Parade on the fire truck tomorrow at first I think this is a good idea but after taking Destiny out of her room and be around kids for 2 hours I don't think this is a good idea she needs to be infection free for tuesday surgery.
We have a good weekend Destiny is exhausted I am so glad I did not take her out again she naps on and off all day saturday. Monday 2/17/03 I sit and meet with Dr. Jolley to decide to go ahead with surgery this is the best for Destiny if she is infection free and we are scheduled tomorrow @ 1pm she can not have anything to drink or eat after 7am this is going to be HARD grammy is staying the night to I could come home to get some rest as much as I can without worry.
I have made it VERY clear to all her doctors I DO Not want her awake for this surgery they are planning a deep sedition I PRAY she is able to go out with no problems. We talk about the risk and concerns I have I feeling things will be ok. As you read my posting in the morning I ask for your heavy prayers for peace and comfort over Destiny no matter what -I do no want this baby to suffer in anyway. I pray Lord to you, for your clamness and protection to help the doctors guide there hands, allow Destiny to come through this surgery with no problems and be able to trust everyone as she does. I pray for the friendships that we have to help us through each and everyday. Watch over myself to help Destiny in Jesus name I pray. I will somehow get to a computer in order to up date you all.
God be will all of you and watch over our Destiny.
Tuesday February 18, 2003
The grace of God has prevailed to watch over our Destiny once again. She was able to go into surgery and come out with no problems and be alert. Thank you Lord for taking care of our miracle we walk with you guiding everystep we take to show us the path ahead of us. Thank you for guiding the doctors, nurses, and all involved in today procedures.
Today before Destiny went down to surgery I put her socks on and cowboy boots that are red and black and let her run around the room in her hospital shirt, diaper and boots it was to cute. I had asked if one of the PICU nurses could go in with Destiny into the OR room until she fell asleep to give her some comfort to know it was safe since parents are not allowed pasted a certain line, this made me feel so much safer that she would know somebody and not be alone. The team came to get us at 1pm however the doctors were not ready so we needed to wait 45 minutes before they took her. I went got some lunch and went back to her room to wait this was a looooonnnnngggg hour to wait for her after wards the doctors came in and told me as soon as she was waking up she was asking for mommy which made my knees weak. After getting the doctors ok Destiny for her to eat since she is straving she had not eatin in 10 hours and had nothing to drink for the same amount of time so she sucked down 10 oz of water and half an egg salad sandwich 8 bites of popcorn and about 5 potatoe chips. Destiny was sitting there and asked for some water She splashed some water up on her bandage and as she was drying off her legs she goes that was close I said what is she goes getting my bandage wet I just cracked up laughing so then I ask her what she wants for super she picks up her phone our friend Konni sent her and goes I'd like a pizza with cheese please ok mom. I actually ended up ordering chinese food instead. It will be a couple of days before she comes home we need to keep a watch on her for pain control. The PIC line that was placed on Wednesday has a huge rock hard knot above the site which has me worried that the line will not last two weeks before we can use the port to cath.
The line flushes and draws back really good however her arm is alarming to me. So hear I sit getting ready to take my contacts out and crash for the evening just wanting to let you know she is come through another hurdle with GOD by her side. Destiny has a fight in her like no other. "The Will of God will never lead you where the Grace of God can not keep you."
Thursday February 20, 2003
So much to share with all of you I will start with yesterday, Destiny had a VERY rough night as well as her mother. I came up to the hospital after going home trying to get some sleep but I was a tossed salad I was giving break dancing a new meaning I got a second wind about 1 am do I need to say anymore. Upon my arrival I come in say hello to Destiny then step back out to talk with Dr. Wellmann to what the plan is I am looking for answers for her arm today it has weighted on my mind all night. Dr. Wellmann wanted to talk to his wife about it because she put the line in- the line must come out what are our opitions to put in an IV in her leg with a bigger needle to run TPN and lipids ok so her nurse for the day is the one to take the pic line while Kitty and another nurse are going to put an IV in her leg I want her to have her arms and be mobile there so before we start I ask Dr. Wellmann I would like for Destiny to have something to help relax her he says OK. The team gets ready two nurses at her feet, a flight nurse across her stomach, I am holding her left hand and her nurse is at her right arm Katie the nurse at her right arm removed the line after taking all the tape off which makes Destiny scream and hollar more then anything so the nurses at her feet are trying the right leg I hear we have a problem I look up WHAT the vein blew in my head I am not happy but keep my mouth shut so they go for the other leg they are able to get it however Destiny is very I mean very upset. Things are moving through the day we get into the evening to hook up meds as soon as they are started on the pumps Destiny is yelling louder and louder then ever that her leg hurts I am trying to clam her down as much as possible so she sleep off and on for a couple of hours then all of a sudden about 1:30 am she was waking up screaming every half an hour if not more fianlly at 3:30 I asked our nurse to come and see how she is behaving because it is out of the normal for pain control she comes in at this time I mention something needs to be done I am beginning to pace the room so they lower the volume from 55ml/h to 30ml/h this last about an hour I call two nurses in this time they keep checking it and touching to see if the line is still good Yes it flushes great and they are able to get a good draw from it as well however they can see that Destiny is besides herself and her mother is not frantic so they make a decision of the minds to turn off the lipids. We make it until 5 am that's it I am done this turkey popped I am overdone. I call the nurse in again I need some help this is to much for this little girl they turn the pumps off now she is sleeping good nice and relax in comes Dr. Jolley to check the site there is some bruising but it looks good I ask him how long does he want to wait to use the new port if we can the best is two weeks to lower the risk of infection so that's it I can not let Destiny's health be put at risk to use this site sooner. I get some sleep do to the fact that I took mu air mattress home and was trying to share the bed with Destiny who kept asking me to get out of my bed oh please share with mommy NOOOOOO. I let the nurses and the charge nurse I want to be included in rounds tomorrow when Destiny's turn comes up I need to hear what we are going to do.
Its after 9 am and Dr. Wellmann comes in I let him no I do not want to put Destiny at risk and it is best to wait the two weeks before we use that port so he understands I ask about what can we do I even agree to have a pic line put in her left arm he goes out and looks at her xray comes in and say it is not a good idea with all the surgeries she has had on that left arm she could threw a clot so forget that what else he could put a pic in her head NO way I almost jumped out of bed and say come boy I'll woop you right I simply asked what else he could do a femoral line in OK that's it we will stay because I would never take this baby home with that line. So during rounds I am called out I am like this caged animal ready to strike and pounce at the first wrong move I've had maybe 3 hours of sleep I look beat. Kitty says she can put in a pic line in her right calf I said NO straight up then if I took her home she could not run around to be a normal three year at least while she is at the hospital she knows she has limits but to take this baby girl home and not allow her to walk or run around is asking to much from family. One of doctors mentions the femoral line again I said OK it looks like we are staying another two weeks yes I said another TWOOOOOOOOOOOOOOOOOOOOOO weeks. Destiny will be able to get her meds, TPN/lipids and anything else needed so we make the decision to do this around 4pm. At this point Destiny has been asking to go home for the last two days I keep telling her when she is better she will sit up in bed and stay I'm better mom lets go we can't baby not today at first we thought we would be able to go home 2/21/03 but now it won't be until MARCH 3rd or 4th not like I am counting. I have asked for this baby to do more in the hospital and behave and she is trooper her mother is breaking like an eggshell this time I have no control to stop the pain and keep everybody away she had been poked four times with two fails and two blow outs the only arm that is good but we can't use is her left arm. I feel like this mother bear looking out after her cubs I am tired and ready to tangle and snarl my teeth. I want to make this all better and Destiny just wants to go home. We have watched movies, played with paints, listen to music, played dress up I even brought in face masks to make her laugh, funny glasses, nail polish I am going nuts this stay I want to go home too I have not worked for the last two weeks but plan to return next week at least have 32 hours on a paycheck I don't worry about the money God has proved for me every month to make sure my bills are paid and I know he will continue to care and take us in his arms. So we get to 4pm by now I am so tired I don't realize how tired I am. We start Destiny off with a special lollipop with fentanyl to help relax her then Dr. Wellmann orders other meds to help her he waits one hour to give her time to sleep nope everytime the door opens so do her eyes. He orders some more meds and she if feeling good and her eyes are resting it takes so many trys to the the right side finally I had to ask are you going to try the left side- yes he was just about too which was thank you Lord for giving me the words but she is going to have a huge bruise he was able to get the left leg after a couple of trys I was never so glad when xray came up so say here you go. So now its about 12pm and Destiny is whinny. I come to all of you and ask for you prayers for all of us here this is going to be a long road. I have brought in Destiny's laptop so I will find time to post when my mood swings of no control. Thank you all for being there and listening to me go on and on at times.
Friday February 21, 2003
Today's story begins at 5 am xray woke me up to ask me to move so they could take there image I had finally crashed long enough to get about three hours of sound sleep and have Destiny resting and not tossing and turning. Then at around 5:30 or 6:00 am Dr. Jolley came in to check the site which looks really good. After morning shift our nurse came in Ruth, Destiny's lungs are wet so they are needing to give her an extra dose of lasix to help draw off the fluid. I went home to take a nap today by the time I closed my eyes and was in a sound sleep it was time to get up and come back I had plans to go to Tyler's service tonight to be there for his parents it was a beautiful service I come back to the room and Cacelia is saying she has been calling my cell phone Destiny has been screaming she is in pain I let the nurse know its ok to give her pain medicine. About 10:15pm Destiny's temp spikes to 101.3 aux which is not good. Its now 12am and they are needing to put a urine bag on her for a good sample they have just drawn labs and another culture to check for infection. If we are not able to get a good urine sample they will need to put a cath in her to get it before we do this I need to be knocked out before I let them start I am in overdrive right now I am tired, I am grouchy and ready to woop butt HOWEVER--- I need to keep cool and not explosed because no matter how I feel or how mad I get at people we still have to come back every month after month to stay and if I happen to stir the pot then what will the tone change for Destiny I don't know I am not willing to take that chance. I want you all to know that your messages you have been sending are very helpfull and uplifting. Your prayers are so comforting to know you are out there helping in everyway possible with the distance between us. I need to run Destiny is urping I will write more as I can.
Saturday February 22, 2003
I was able to get a couple of hours of sleep Destiny did not break her fever and is still running high when I came home to get some sleep. I took today crying and raising my voice to protect Destiny. I feel like my spirit is breaking she did not want to smile and did not want to play I even had Auntie Cindy bring her daughter up so they could play with the horses Destiny had not interest she just laid in bed coughing so hard it was making her urp as it did all night last night. Dr. Wellmann came in and said he needs to put in another central line and will need to remove the one he put in the other day but at the same time he will need to put in a short term IV now knowing she looks like a pin cushion rolled over twice with pins. I wanted to know who would be putting in the IV and I confirmed that Dr. Wellmann would be putting in the central line nobody else correct. That was right but he was going to have Kitty come in to put in the other IV I told the nurse NO- at first the first the nurse was asking me no to what I finally had to come out and say NO to Kitty putting in the IV. Now she may be a good nurse and a good person but I was feeling pressured that Dr. Wellmann only wanted her to do the IV's on Destiny. Well she is the one who put in the PIC line, blew the vein in her right leg and got the IV started in her left leg. So Dr. Wellmann came in sat down and said Kitty will put in the IV in I looked at him and said NO she won't he goes NO why-- I had this look now why would you ask me why I feel NO is NOOOOOOOOOOOOOO.
I looked him in the eyes its a conflict of interest for your wife to be in here while you are working on Destiny I am tired, not slept in three days and I feel like I am a bear protecting her young. He was really taken back he got up and said OK.
This has been the worse stay ever at the hospital with all the things going wrong for her being stuck every other day I was upset with the Doctor when I kept asking about the Pic line and wanting to know what he was going to do that tuesday afternoon he kept mentioning he just wanted to get her to surgery and then after surgery I ask again but he can not give me an answer because he has to ask Kitty because she placed the line well this is where I got my claws out and was thinking and have still be thinking and this is why is bothers me so much when we was pushing for her to do the work today. He could not make the decision to remove this line without asking her first--- Well he is Destiny's doctor why do you need to ask your wife. If he can not make a decision right now then I don't want Destiny to put at risk if he has to ask at another time that might be life threathening. I have been in flurry and on guard towards him but I have not told him in a polite way then today he backs me in a corner and I let him have it. Now I can not go in blasting him knowing this is a very small hospital and if I upset everyone is not what I meant to do. I will need to take Destiny back for every visit and then there are only two doctors Destiny can see for her heart Dr. Wellmann and Dr. Brauner that is it. I feel like this egg that is cracking in many pieces this time everything is going wrong and Destiny is not getting better as of today her cough is worse she is so sore that she will not try to cough unless she needs too but she crys everytime. As I was leaving her temp was 103. this baby is suffering at this point. After the new line was placed Destiny was put back on antibiotics, oxygen by mask at 5 liters, and Dobutamine shorty after being hooked up she was throwing PVC's in a row to where it is alarming and without the oxgyen her SAT's where in the 80's. I had a friend arrive just as they were coming in to get started and I just burst into tears we went for a walk for me to get away and let go I was able to cry my eyes out then afterwards we sat there and prayed I was able to be given the strenght to go back in the room and be strong for Destiny. After talking with my sister she was not going to let anybody get started until I came back I guess one of the nurses came in twice to let her know everyonewas ready and Cacelia said you can wait until Ruth comes back. This journaling I am able to do is not meant to hurt anybody it is how I feel and want you to know how things are not always peachy. For you to feel my emotions. Especially for you to all know how much your prayers are needed in our lives. The cultures they drew last night no sight of infection but something else is going on we have not been able to break this fever below 100.0 in the last 24 hours. I come to all of you on my knees asking to keep us in prayer for healing, compassion, for strenght and wisdom to get through day to day trails without feeling like today. I have taken a sleeping pill to get some sleep I will post to all of you later. Thank you for letting me share with you what is going on and thank you for your support and prayers. Ruth and family
Monday February 24, 2003
Did you hear the moutains tremble? Through the power of prayer Destiny's body was able to fight off the fever. We now need to help her with the cough that she has to give her body a rest and help it fight and most important be able to rest. Today Dr. Wellmann started another antibiotic called clindamycin along with the ancef. A pacer check was done today God has put his hands out to let me know it was time to relax the battery is reading 15 months thank you Lord. Over the last couple of weeks I have had emotional out breaks cryed more then before and have been so scared that my baby girl would leave this world from all that she had been through I watched the sparkle in her eyes fade and she did not have the engery to fight today things have turned around I know Destiny's mission here on earth is not done and one day she will go home to be with the Lord as of today I am taught another lesson to how important it is to enjoy each and everyday we are given. I went to work and afterwards came up to the hospital Destiny was napping upon waking up grouchy she wanted to be held so I sat and rocked her sleeping on my chest about 7pm she woke up coughing really hard we sat back in the bed I looked into her eyes to ask her a question as she looked up I could see the light shine I could see the fight Dear Lord I come to you and thank you for the day I thank you for helping this baby fight so hard to help others. I made a hard decision today I have asked for Dr. Brauner to take over seeing and taking care of Destiny. I respect Dr. Wellmann he is a good friend and shows alot of support I know his love for the Lord is ongoing. I let him know today how I felt about the decision regarding the PIC line needed to be removed. No hard feelings he will still be taking care of Destiny and helping out while at the hospital but he says he understood after our talk I felt like I was talking to the Dr. Scott I had not seen in a long time. I just really feel that it is a conflict of interest for husband and wife to work together in the same place, same time everybody knows there business. Destiny may have a virus at this time at first they thought she had a very septic infection in her system but one of the nurse's son was admitted with a bad cough, high fever and wretching. Destiny will remain on the antiotics, dobuatmine, and oxgyen to give her all the help she can get. I want you to know I am starting to get some more rest I had some of you worried because I was crazy woman a mother protecting her child and having no control with how bad things were turning. I have come home to take a sleeping pill to get some well needed rest knowing Destiny is out of the danger zone but I am only 15 minutes away from the hospital and realize God could have her go home anytime. All and all I sit and watch the miracles unfold one by one. PRAISE GOD
Tuesday February 25, 2003
Destiny had an awesome day today she ate for the first time in days and has kept it down PRAISE GOD for the miracles everyday that we see of imporvements. I am going back to work and have slept the last two nights at home my family feels I needed to get away and get some extra sleep if possible. I am glad to say I have enjoyed talking with Dr. Scott the last couple of days the reality was needed to how things were assumed. One of our friends is in the hospital now as well his name is Jared he has the virus the Destiny has. Destiny gets tired really easy but you can see the sparkle and shine and most important the fight in her spirit. I can see the light at the end of the tunnel right now next week tuesday will be two weeks from surgery I will begin training on the port for cleaning and how to access it. Destiny will be takne off one antibiotic tomorrow and the other in a couple of days. The next step is to see how she does coming off her oxgyen and dobutamine. I went to feed her tonight and she goes I can't eat because of my tube. So I tryed again and she goes zip it zip it all I could do it laugh. The bruising is still bothering her the dressing on her leg needs to be changed daily with all the dirty diapers she is putting out. Her chest looks great from where the hickman came out. I was given a picture with my Destiny with our new friend Destany these two have the fate of God on their wings. I receive all your emails and want to thank you again over and over for the support it means so much.
Wednesday February 26, 2003
Today I was thinking was a good day but I had that feeling that I needed to check in with the nurse to see what was going on at the hospital. Upon talking with the nurse Destiny has given her a couple of smiles today, she was given a bath to smell better and her outlook is incredible to feel so good about herself. The nurse let me know they took an xray and her heart is larger then it was 3 days ago to give you an idea it looks like a mini basketbell inside her chest ( your heart is the same size of you hand in a fist) they are going to give an extra dose of lasix to see if it will help upon receiving this she did not pee out as much as we had hoped at this time I am not going to go to work tomorrow until I can talk with the doctors to find out what next. I have two main questions for them 1.Can the fluid be taken off her heart, 2. Will we be able to leave the hospital? I have come to terms that I want the best for Destiny and if God's will is for her to go home I have accepted this and will let her go she is tired and the cough that she has now is not from her lungs but from her heart working so hard. Both doctors had left for the day by the time I got here but they do want to sit and talk tomorrow upon there message.
I want you all to know that my heart is breaking with the thought of her leaving us hear on earth but to see her go through so much and to work so hard to breathing and to catch her breathe after she coughs all the time it wears me out I can't even begin to image for her what is running through her mind. I need to be honest I would let her go so that she not suffer hear on earth. I will keep you posted tomorrow evening what is said after tomorrow's rounds. I am nervous but know this is God's will no matter what I have turned over the reins of trying to be in control. Tonight we are sitting here so I ask the nurse for some milk instead of ordering a couple here and there the cafe sent up a gallon to keep me from asking for a day or two. The nurse just came in to lower the rate and volume from the TPN to 40 ML/H and the Lipids to 5 ML/H the nurse has suggested to support Destiny's rib cage when she is coughing to help her out. I know that we are under heavy prayer right now I am so clam and relax I do not have that scared feeling in my stomach that something might happen its actually how can we help others from all of this in the last three weeks during this stay. Each time we are in the hospital I learn more about other families and able to reach out them in some sort of way. There is a mom hear who's baby is 5 pounds and he is almost 5 months old please keep this baby L in your prayers for recovery to be able to go to there home and be with the siblings. On of our friends Jared is on the peds floor fighting the same virus Destiny has as well. This virus is going around Anchorage really bad most school have a 1/4 to a 1/3 out. I am going to take out my contacts to rest while Destiny is resting. Praise God for all that we have and for being a part of his family. I pray for you to be able to have a claiming over this time while we are here at the hospital. No matter what it will be ok.
February Thursday 27, 2003
I had a rough day today I sat down to talk with Dr. Brauner about final decision I have come to understand that my will for Destiny is God's will no matter what. Destiny was given a tea set to boost her spirit. I am not giving up on Destiny and we are still trying everything possible to help her. At this time Destiny will not go home if the time comes to go home it maybe to go home and be with the Lord, they doctors gave her a dose of medicine that is close to 3 to 4 times the amount of lasix she normally gets this was given in one dose and not alot of output. I called the family in to be here for me and to listen to what I have made for choices. I have signed a DNR order but have marked it as limited to help but not to keep her alive by machines. I am praying for my own strenght as well as Destiny's daily. I am trying to be strong for her to let her know it is ok no matter what. Destiny is awake off and on throughout the day but tires very easy. To our family members our Uncle Ronnie went home to be with the Lord today we were called hear at the hospital. As well as everyone favorite Mr. Rogers went home to be with the Lord as well. Tomorrow the sun will come out and it will be a brand new day. I will post more after I am able to get some sleep. Destiny has spiked yet another fever we are needing to keep her on oxgyen for her sat's to stay in the high 90's all she can do is say no tube- no tube so I tell her if you take the tube you don't need to wear the mask so they gives in and put on the tube still fighting the whole time.
At night while the room is still Destiny will be sleeping sound fighting saying no owies no owies there is nothing worse to watch her it ripes my heart out. God bless to you all.
Friday February 28, 2003
AWESOME is all I say for today you were able to witness the true miracle at this time to anybody who does not believe just look at Destiny today. Yesterday was a draining day alot of tears and emotions today was a brand new day and we made the best of it. Within the last 24 hours this is what has happened in more detail today we had tea party with homemade hats with flowers Destiny was pouring tea for everyone which was actually grape juice and had a ball during this time a person who works here at the hospital plays the harp was able to come and play for us during our party which was so touching to hear. Yesterday Destiny was given a handmade quilt for us to have the unit was given 210 by woman who made them for children here at the hospital. Trista called a couple of the radio stations looking for a kitten which the Easter bunny was going to bring but after the paperwork I signed yesterday Trista was able to make Easter come sooner with this gift upon calling the stations the radio announcers put out on the radio for someone with a short haired kitten to be able to be released yesterday a company came through and donated this kitten that was going to sell for $250.00 along with some food we have named our new kitty "Princess Talks A Lot" who slept in my arms and is so soft Trista is going to keep the kitty until we are able to go home. Upon asking for some milk cartons to be ordered I guess the cafe was tired of me asking to they requested a gallon of milk be sent to our room I guess I won't need any at least for a couple of days. The doctors are trying different medicines to help pull extra fluid off of Destiny's heart at this time we are trying Bumetanide which we only took one day so onto the next one, thiazide which is given once a day and we are giving that on top of the lasix three times a day we have taken her off the Dobuatmine and she is now on milrinone to help the heart contract better with the squeeze and the cough syrup we are now using to give a rest is tussionex (this helps her sleep and helps with the cough big difference.)Today was incredible tomorrow the sun will come up and sometime during the morning hours I will start my day tomorrow may be good or bad I will take it for what is worth and make the best of it no matter what. My will is God's will--The best for Destiny at this time we will not be leaving anytime soon from here Destiny is still a very sick little girl fighting day to day. Information about Uncle Ronnie he was at home with Aunt Regina she will follow through with his request I do not know when a service will be when as we find out I will post for some of you to know. Grandma, grandpa, Auntie Edna and Frankie thank you for the box of clothes, shoes and cards along with the lotion for my mommy I love them. Dakota thank you for you beatiful picture, Konni for all the weekly surprise to all of my friends and family for listening to me ramble cry and vent when times are rough you are my support in more ways then you'll know for me with you help I am able to break and then gather my thoughts and emotions and come back to be strong for Destiny.
For many of you this is my form of communication to know what is going on day to day buckle up and stay close we never know which direction the path will go believe in FAITH the power of prayer has moved many moutains. Follow your heart and stay close. Our hugs to all of you and many many thanks for you to know what it means to us.
January's Daily Journal
Destiny's Daily Journal
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