Gavin Christopher Owens
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< > March 2008
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Fri, Mar 28, 2008 9:50 AM
Sorry for the lack up update -- We are home! Dr. Katz, who is the best surgeon, placed Gavin's line late yesterday afternoon and we left the hospital around 8 last night! Everything went well and they were able to get the bone marrow and aspiration and get that sent out on time.
We are so happy to be home! Gavin had a nice dose of morphine before we left so he had the most peaceful night -- and mommie and daddy did too!
Once again we thank everyone for your support, prayers, visits, encouraging words and love! I just can't imagine traveling this journey without the huge support group we as a family have. We are so blessed to have all of you, known and unknown! If you have been apart of our support and have never made yourself known -- please do so! We want to know who you are, as you have truly been apart of our lives.
Remember -- no update is usually a very good thing!
We are off to live life -- see ya later!Add a comment:
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Wed, Mar 26, 2008 9:46 PM
Oh my goodness what a day! It started off rather quiet as no doctors were around all morning, which really frustrated me as I just wanted to know what the heck was going on. The line is scheduled for tomorrow and today we went down to have ultrasound to look for access.
Gavin blew 2 IV's today and at this point we feel that we lost all peripheral access. They actaully had the Anesthesiologists come up to try to get a line placed, and after 3 tries they found a spot.
Tonight Gavin will be getting a platelet transfusion at midnight and then he will run the bolus and amphotericin infusion around 7. It is going to be a very long night.
If all goes well tomorrow we might be able to come home tomorrow night or Friday morning. We will need to come back early next week for a CT scan of his kidney as there are some concern in his right kidney.
We are still holding his lipid for now, as this will only send him downhill fast. We hope to possible start him back on it in a week or so as Gavin really needs the extra calories.
Feeds? What are feeds? We need to start feeds at some point. I don't even want to think about it right now.
Please keep in prayer our friends Andy and Dawn's newborn niece who is being transferred to duPont NICU tonight for open heart surgery in the next week. Pray for the family to have peace being separated from their baby and that the mom could find rest to heal after giving birth.
This post was a bit scattered -- shows you the state of my mind. :)
Thanks!Comments:Jon and Pam: We are standing with you in faith for Gavin's body to line up with the Word of God!Erica Fisher: If it's any consolation for your friends, duPont has a wonderful reputation for pediatric cardiology. Their current program was set up by Dr. Norwood, a pioneer of the staged surgeries for hypoplastic left heart syndrome (HLHS, which is essentially what our Nicky has) and for whom the first of the stages is named.
www.littlehearts.org has some great information as well as many heart kid stories which should give them great hope for their niece's future.Sandra DiCesare: THinking of you. Prayers that Gavin does well, getting his new line today. Hoping you get to come home real soon. Hugs to all of you!!!!The Rich Family: Hope all goes well and you guys will be coming home.Cindy Heintz: My thoughts and Prayers are with all of you.
Hope you get some answers real soon.
F R O G (forever rely on god) and B+ always.katrina: that you're coming home!!!Katrina: Sending positive, energetic thoughts your way. Can't wait to readMary Alice Carpenter: Prayers...Prayers...Prayers need I say more.Add a comment:
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Tue, Mar 25, 2008 6:51 PM
Nothing new to report. Gavin had an odd day with being very lethargic and cranky. He has been running a low grade temp, but nothing too alarming. He lost another IV this afternoon so we are saying lots of prayers his other holds up.
We were told today that Gavin will not get his line tomorrow but rather Thursday or Friday. They identified the type of yeast that was in his blood and want to make sure he is on the proper anti fungal. Hematology also came by today to talk to us about the bone marrow aspiration that will be done the same time as the line.
Tonight they will be infusing his Amphotericin at 5am. yuck. Tannkfully they are trying to move it closer and closer to the day time. He has to have every 15 minute vitals while it is running so needless to day 5am is very early -- way too early, though better that 3am last night!
Hoping for another boring day tomorrow!Comments:dawn: Gavin,
My Niece Hailey is coming to your hospital tonight. I am praying for both of you to recieve the right treatment and care for your complete healing!
love DawnTerri & Bruce: Praying for everything Karen and Adam. You hang in there and feel His presence with you today and everyday. Love ya lots....P. Bruce and TerriBecky and Matt: Hang in there and we hope today will be filled with joy and peace! We're praying for you and for the family who lost their baby! Blessings to you all!Fava Family: We are thinking about and praying for you guys, especially Gavin. We admire your family's strength and faith through all of this.kate & gavin 2: You're on my mind all day and night. I hope the IV holds up - there's nothing worse. Well, you know what I mean. Every 15 minutes just stinks. Hope you at least get a cool nurse to make you laugh! :-) Hang in there - I'll send lots of positive, boring thoughts for tomorrow. I've got lots of those.
xoRon: You are all in our prayers for everything to come together quickly to have Gavin happy and healthy and for you to be able to return home. Adam's friend and his family are also in our prayers.Add a comment:
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Mon, Mar 24, 2008 8:03 PM
Last night Gavin's infection got much worse and the decision was made to take him off his current antifungal, fluconazole and he was placed on Amphotericin B, which has horrible side effects and made him very ill. With that said, this afternoon Gavin looks great! His fevers are gone and he actually sat up today. The new med seems to have the infection under control, we just have to deal with the side effects of the new med.
Gavin's echo-cardiogram from today looked good and we should be getting a new line on Wednesday if he continues to get fever free. We lost one iv today and it looks like another may not make it through the night, which leaves us with only one. Please pray that we can maintain access until Wednesday.
Nothing on the agenda for tomorrow, just another day to get stronger for the OR on Wednesday.
Please keep in prayer Adam's friend from work who lost his infant son Payton this weekend after a long fight with prematurity issues. Our hearts are very heavy tonight for the family.Comments:Dawn: Madison--- Miss Dawn needs you to listen to you mommy! Blow Gavi a kiss for me, OK?Erica Fisher: *sigh* Anti-fungals are so harsh on IVs
I'm glad he's able to sit up again, at least - must make him feel a bit better.Matthew and Amy: Yay!!! We are very glad to hear this more positive report. Praising God with you for Gavin and praying for comfort for the family that lost their newborn. That definitely puts things into a new perspective.Cindy Heintz: Gavin and Family ....keeping you close to my heart, thoughts and Prayers.Marilyn & Randy: Gavin, you are so strong! You keep fighting and we'll keep praying that Jesus will give you new strength and total healing. Love you!Pastor and Liz: You are an inspiration! We are praying and continue to believe to total healing. Love you!
Shari: Karen--I am glad to hear that Gavin is doing better. Prayers have been answered. Now, praying that IV stays open until they can place another line or port. Blessings! ShariMary Alice Carpenter: Thank God the fever is gone. And you know we will pray that he gets stronger for surgery. Sorry to hear about Payton and will say an extra prayer for the family to get through this difficult time.John & Susan: Gavin, we are praying for your daddy's family who lost their son. We are also praying that you feel better. We know that God has his loving arms around you. We hope that you get stronger and the doctors are able to help you get better.Add a comment:
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Sun, Mar 23, 2008 7:38 PM
Hope everyone had a wonderful Easter! The Easter bunny found us at the hospital and left a few nice surprises for Madi and Gavin. Madison had a great time at her very own egg hunt and enjoyed all the attention from the staff watching as she gathered the eggs around the unit.
Gavin is still running very high fevers. They will be making the decision tonight if they need to switch his anti-fungal IV meds. The other med has terrible side effects and will make him look very sick will it cures the infection. For now they are going to wait a few more hours and see how his fever does. The plan will be to get a new line in the next few days, as long as we can clear the infection. His ultrasound on his kidneys yesterday revealed a possible pocket of infection so we are also waiting on urine cultures to come back. He was seem by the Opthamologist today who gave him the all clear as far as his eyes go. Tomorrow we will get an echo of his heart to check for any yeast growth, which should be fine as well, just a precaution.
Thanks for your thoughts and prayers. Hope to have news of no fevers for tomorrow!Comments:Ron: We're glad to hear that Madi was able to have fun doing the egg hunt. We hope that you will soon get some answers which will help Gavin. You all are in our prayers.ivey: Madi is a lucky little girl. Hope Gavin gets answers soon. Holidays in the hospital are tough, but you are in our prayers.
(Isn't that bunny smart!)
Mary Alice Carpenter: Happy Easter to all. Glad Madi had a great egg hunt. We prayed for Gavin and all of you at Church today and I lit a candle that he would be fever free and on the road to good health. My Dad truly believed that if you lit a candle it showed God where you are and I've followed in his foot steps. I hope tomorrow brings you good news.Add a comment:
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Sat, Mar 22, 2008 9:45 PM
Gavin did great with having his line removed and at the moment with help of some meds his fever is down. We gave him morphine this afternoon, which gave him some much needed peace. They were able to place three peripheral Iv's, which is amazing -- now we just have to keep them. He is having some issues with being fluid overloaded and despite the lasix is still pretty swollen. We have decreased his fluids overnight so we hope that will help him.
I was told that we should see some improvement within the next 24 hours. Right now it is hard to tell because the morphine is keeping him very calm and still, can't really tell how he is feeling. I hope to get some sleep tonight -- big day tomorrow!Comments:Fava Family: Happy Easter. May Gavin and your family be blessed on this special day! Pastor Liz and the whole Church prayed for Gavin during service today. We will continue to pray until Gavin is healed.Debbie Heisey: oops, I am still only using one arm and somehow I didn't get the verse typed... Jeses said,Debbie Heisey: Wishing you a joyful Ressurection Sunday! Jesus says in John 16:33,Barry & Lovell: We are beliefing for a miracle for Gavin and peace and rest for you an your family on this Easter Sunday. We love you!Gram and Pop: Praying for a peaceful Easter for your whole family. We will mis you. Give Gavin a kiss from us Love you gram and popRon: Wishing all of you a Happy Easter, despite the circumstances. We are praying for healing and comfort for Gavin and for rest and reassurance for you that God is in control and He is with all of you no matter how difficult things get. We pray that you will soon get good news and comfort.dawn: Good morning Owens Family! Happy Easter (despite circumstances). We love you!Pastor and Liz: On this Easter Sunday we are praying for HEALING! Total and complete. Your church family loves you all!randy & marilyn: What can we say? We are holding you up in prayer. So sorry Gavin is so sick right now. Hope you get the rest you need tonight.Landis family: Thank you, God, for answered prayer! Please continue to watch over this family. Strengthen them, encourage them, and grant them your peace. Continue the healing work you are doing in Gavin's little body. May Easter morning give them a special reason to celebrate as Gavin continues to improve. Thank you, Jesus, that by your stripes we are healed!Add a comment:
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Sat, Mar 22, 2008 11:07 AM
Gavin is in the OR now having his line removed and also they are transfusing him as his counts dropped over night. Gavin is a very sick little guy right now and we are praying that pulling the line will help give him some relief.
They are going to intubate him and attempt to place two additional peripheral lines as well as a possible multi-port "central line like" catheter to get us through the new few days. Gavin's issues with dextrose dependence and his need to run triple antibiotics, blood as well as some form of nutrition makes this whole situation rather complicated.
It also makes me a but uneasy that he is going to the OR with a fever of 105. I know he will be fine but even though I've left him in the OR around 20ish times, it never gets any easier.
Gavin has swelled up again and once again his liver and spleen are overtaking his abdomen. When we place a new line in a few days we are going to try to coordinate the hem/onc team to do the bone marrow aspiration at the same time. This may give us more clues as to why Gavin's counts drop so drastically. It is fascinating and scary to think that in the past 2 week Gavin has been transfused 3 times and is not bleeding from anywhere and yet his body has managed to destroy/trap his RBC. It's just crazy to think how complex our bodies are.
My family will be coming up today and then tomorrow is the big "biohazard Easter egg hunt". I say this because last year my mother, without thinking hid the eggs around the big red biohazard container in Gavin's room -- and there was Madison searching through the red box for Easter eggs. It's just funny to me -- gives you a glimpse of our reality. It's ok to laugh about it at times!
I'll update again tonight to let you all know how Gavin did.Comments:christine: I am hoping for an Easter miracle.Mary Alice Carpenter: Gavin is an amazing little boy. We will pray that this surgery and blood will help to get him on the road to recovery and that his temperature comes down to normal. I am sure Linda will make the egg hunt a great memory for Madison and will bring you a lot of greatly needed smiles. Happy Easter and may the risen Lord carry you through these tough times.Matthew and Amy: Wow! I haven't checked this website in a few days and so much has happened! We will pray hard for Gavin, and the rest of the family while you wait for him to feel better.Landis family: Keeping Gavin and the rest of your family in our prayers! We're believing God for Gavin's healing!Matt and Becky: We're praying that everything goes okay today for Gavin and that you can be comforted by having loved ones close! May God Bless you all duing this crazy time!Debbie Heisey: Praying for God's best for you in this storm. As I was praying I was reminded of a time when Madi, Gavin and I were hsngin out in the Nursery and Madi was drawing a rainbow. I was reading a book to Gavin and he noticed a rainbow in the book....he looked at Madi's picture and then reached for the rainbow in the book! I have been so blessed by your family. Be blessed and be safe in Him! ~Deb HeiseyThe Tobias Family: We will continue to keep Gavin and your family in our prayers. He is really a fighter. My hearts go out to you all. I wish there was something we could do to help you or just make your life a little easier. Karen everytime I read your posts and your blog you amaze me with the stength you have. Gavin is so lucky to have you fighting on his side with him. Your family strength and bond amazes me. God Bless your beautiful family and we pray for comfort for Gavin.Add a comment:
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Fri, Mar 21, 2008 3:29 PM
Gavin is very sick right now. He is continuing with high fevers topping off above 106. He is also in a lot of pain in his belly as his gut has shut down. We did find the source of his current fever -- he has a yeast in his central line, which has spread to his blood stream. He began anti-fungals this afternoon but most likely the line will need to be pulled. This brings up so many issues with Gavin's poor access and also his dependence on D15, meaning he must have two peripheral IVs at all times, one to run the dextrose and the other as a back up if the main IV blows.
We didn't get to out room until 4 this morning so needless to say I am exhausted beyond belief. Adam took off early today to come help me at the hospital and Madison is with her Nana and Pop pop.
So for now the plan is to watch the cultures, pull the line, clear the infection from his blood, watch his blood counts, manage his pain and get a new line.
Sounds easy right?Comments:The Hannum's: Grace peace strength and renewed life to you and your baby boy. And may you find quick and constant access to the only One who has the resources you need to press through this season. Always, always praying for you.Carrie-Anne & crew: Karen &Adam...stay strong and know that we are praying for all of you. We pray for healing and comfort for Gavin. Peace for you and for Madi. Prayers for strength and healing are said for you all the time. God Bless this family!Jimmy DeWan: Gavin Gavin Gavin. Get better Bud. I will be praying for you. I have not stopped. Get Well so you can be home again with your family who wants you to get better. They love you. They don't want to see you sick like this. I am also praying for you Adam and Karen. Keep me updated. If you can try and have a good Easter. Love you guys. Jimmy DeWanRuby: Jesus Have Mercy on this family, let your peace be their stronghold until this storm passes over.Christine: Every time I see an update I am hoping for wonderful news. My heart goes out to your entire family. I think you would be surprised how often you are in peoples thoughts and prayers. Even strangers :)Eileen: My heart sank when I heard you were on your way back, and that Gavin was so sick,so soon. Hope you can get some rest and that your stay is as short and uneventful as possible. Hope the line can be saved- it is the weekend for miracles.Cindy Heintz: Gavin & Family..Storming heaven with lots of Prayers and answers fot all of you. Always in our heart and thoughts.Mary Alice Carpenter: God bless you all. I sure wish there was someway to help or even the right words to say to keep encouraging you both. Just know that many people care for all of you and will continue to pray. Take deep breathes....close your eyes and remember better days...You can do this with the grace of God.Shannon Dyer: Hey Owens Family. I just wanted to let you know that i'm praying for you!!! I am praying for Gavin's healing and God's strength to be poured into you and Adam!!gram c: Nothing has been easy for our litle man and consequently for you and Adam either. We and every one we know continue with prayer.feel supported by everyones love for your family. love and kisses GramFava Family: dear god, please make baby gavin better and when you do make this never happen again. we really miss you and want you to come home from the hospital. in your precious name amen.
jacob favaRon: I'm so sorry that things are not easy right now. We are praying for all of you to be able to get some much needed rest, for Gavin's health and comfort, and for some sort of resolution to help Gavin. Hang in there.Add a comment:
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Thu, Mar 20, 2008 9:30 PM
Gavin is being admitted to duPont after reaching a fever of 105. I'll update in the morning with anything new.
Comments:Shari: I am so sorry Karen...I, too, hope there's some answers soon. I will continue to pray for your little one. He certainly deserves a break as does his family. May you feel the arms of Jesus around you for comfort. Blessings! ShariThe Tobias Family: We will continue to keep your entire family in our prayers.Deb& Jeff: Not only praying, but venting on your behalf as well! Trusting Him in our hearts and hoping our minds can catch up soon. We love you and if I knew how to type the sounds of frustration I would- can you hear them?The Hannum's: So, so sorry to hear that... God bring a quick answer & remedy!Marculo Family: We will continue to pray and trust God for healing...heather: Matthew 6:34 (sorry message got cut off) Keep your heads up, love you.Heather: Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.Terri & Bruce: Praying.....love ya....P. Bruce and Terridawn: so sorry!The Rich Family: We prayed for all of you at breakfast.Debbie Heisey: My thoughts and prayers are with you. Knowing that God's grace will see you through this storm. The Word is, the Word was and the Word wil be. May He minister Peace to your family today. Be blessed and be safe in Him. ~Deb HeiseyFava Family: We will continue to strongly pray for Gavin and your family.Randy & marilyn: We will continue to pray...Randy & marilyn: We are so sorry to hear that!Pastor and Liz: The staff will be praying this morning for Gavin. We love you.Lisa and Michael: We are so sorry... hopefully you will have some answers soon... try to all get some rest if you can. We will be praying for you, especially during this Easter season. Trust in Him... the will of God will not lead you where the grace of God cannot keep you. You're in our thoughts and prayers. Hang in there- we love you Gavi. - Lisa and MichaelAdd a comment:
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Wed, Mar 19, 2008 8:40 PM
We are home. Gavin kept his blood count up through the night and was started on a small amount of feeds. The doctor talked with me this morning about his biopsy and stated that they did not find what they thought was a possible cause for Gavin's severe inflammation that mimics septic shock. He did state however that the biopsy was very abnormal and that they need to look at the biopsy further and sent it down to a specialist at Duke. We'll see, hopefully we will hear something next week. The doctor reminded me that it can take time to make a diagnosis.
We are still left with questions as to why Gavin gets so severely ill. There is a possibility that Gavin has developed an intolerance to the intralipid which is the fat in his TPN, which is also what we have been trying to get him off of and on the the omegaven. For now we have stopped the lipid in order to prevent Gavin from getting worse.
With that said, we have to remember Gavin's underlying condition of being hyper-metabolic and now we are basically cutting out his fat and drastically reducing his calories. Which is worse, the inflammation or Gavin loosing the energy he needs to grow and thrive? Well, apparently they think the inflammation is more severe at this point.
Anyway, hope that was not too deep. We are glad to be home. Tonight I was able to make a trip to Starbucks and have a little alone time, which was much needed.
Thanks for all of the wonderful comments left on the last post. Your words really help Adam and I to keep pushing forward.
Please keep in prayer another sweet family we met at duPont this year. Their little baby Gavin, who they waiting so long for is having some issues. He will be going back to the hospital for some testing tomorrow. Please pray they they too can find some answers and solutions to the issues their son is having.
Comments:Ron: We're all happy you are home and hopefully you can enjoy an uneventful Easter. We'll be praying that the doctor from Duke is able to draw a helpful conclusion. Happy Easter and God Bless You.Amy Basciani: We are just not meant to meet up again. I was at the hospitol today and pjhtiyttrreeehrww55t6t5rr45t4rk kui. Sorry that was a message from Gianna. I left the computer to pry easter candy from my one year old Bella. Ok back to buissness. Bella had her study today. I wanted to come see you and bring Gavin a surprise. We missed you again. But i am glad you are home. Bella failed her test today. So i was in a mood anyway. I prayed so hard you guys would be home for easter. But i know what you mean about the back and forth. You want to be home but it is such a tease to go home and end up back there and you sure have had your full. Have a wonderful Easter. I wondered if You.your husband and Maddi were tested for the Mit. gene/ May God Bless you this Easter season.
Love Amy
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The Gardner Gang: So glad that you are all home and that you can have a less stressful weekend so you can just enjoy easter! Take it easy guys!Jenn: I'm so relieved to here you are home...can't wait to see you on Easter..All my love and prayers...Jendawn: Adam-- I am sorry that i tend toFava Family: How wonderful that your family is home once again! We will continue to pray for Gavin's health to improve and for the doctors to find some answers. We pray that one day hospitals will only be a memory for Gavin and all of you. Blessings to your beautiful family!Randy & Marilyn: So happy you are home! Continuing to Pray for all of you. Will also be praying for your friends baby. Love you guys!BILL & RUBY: THANK THE LORD YOU ARE HOME ONCE AGAIN! WE CARE!kate: With all you are going through, to even ask anyone to pray for me.....well it says a lot about your character Miss Karen. Glad you're home...happy about yourSandra DiCesare: So Happy you all home!!! You are always in our thoughts and prayers.... Starbucks and some alone time. Sounds good to me!!! Love and hugs to all of you!!!!!John & Susan: Yeah! There is no place like home. We will continue to pray that the Lord will reveal to the doctors what they underlying cause is and how they can help Gavin.Add a comment:
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Tue, Mar 18, 2008 8:34 AM
No answers for today -- well at least no one had the compassion to come and tell me what was going on after saying we would know something by this afternoon. Anyway -- We are starting Gavin on feeds tonight with 1/2 strength Elecare at 5cc/hr during the night. If he can tolerate them, or at least not make his condition worse we can go home tomorrow.
Gavin's counts dropped again last night but we held off on any blood this morning. His inflammation is down but because his spleen and live are still so big they still trap the Rbc's and platelets. We are checking labs again in the morning to make sure he is at least holding his counts steady. He is still so swollen. We took Gavin out of his room tonight for an adventure hike through the basement of the hospital where we got a tad bit lost. -- oops. Madison at one point stated, "we've got a problem here." It was nice to get out of our prison for at least a little bit.
I'm looking forward to going home -- but Adam and I both are just looking to have some quality time at home not sick time. What's the point of being home if all we think about is going back to the hospital? I'm working on that in my own mind -- but gosh enough is enough right?
Thanks for helping us through the week!Comments:Ron: Leave it to Madison to bring a smile at a time when it is hard to smile. Hang in there. We are all praying for you and hope that you can return home soon. Take care and God Bless You.Laura Yaghoobian: Sorry I had a problem posting **Dawn is absolutely right. Karen, you are a hero to us moms. Thank you so much for posting the pics and updates. The pics in the hospitalLaura Y: Dawn is absolutely right. Karen, you are a hero to us moms. Thank you so much for posting the pics and updates. The pics in the hospitalLaura Y: Dawn is absolutely right. Karen, you are a hero to us moms. Thank you so much for posting the pics and updates. The pics in the hospitalMatthew & Amy: Hey guys, I wish that Dupont wasn't so far away sot that it would be easier to visit you there. Thanks for all of the updates. Your loved ones leaving you messages are exactly right, you do an amazing job with Gavin and everything that comes with him. We will continue to pray that God gives you strength and peace. Hopefully you can come home soon.Fava Family: Strongly praying for Gavin's comfort and healing and for your family's added strength.RUBY: KAREN AND ADAM- WE ARE HOLDING YOUR HANDS UP TO JESUS!Lisa and Michael: Karen you are doing great... keep hanging in there. God knew what He was doing given Gavin to you, because no one else could love or care for him so well as you and Adam. Madison is a great big sister and you will all be in our prayers. Great idea making an adventure in the hospital! Hope you are home and enjoying family time again soon. God bless- Lisa and MichaelDawn: Karen,
You are a hero to us moms... i know it's a position you didnt ask for and no one would ever want for you to have. BUT please know that we continue to care and support your family. Women's Bible study is taking some time to lift up your needs to God this morning!
Debbie & Jeff: Amen to Terri's post and you're right- enough is enough already! Hope and healing for all of you as spring unfolds! Watching & waiting with you...Terri & Bruce: Hi Karen...thank you so much for the comtinued updates. Hospital life sure is frustrating huh! Hang in there girl, you are incredible. We will pray too that you can go home without the fear of returning anytime soon. We'll pray that God's resurrection power that raised Jesus from the grave will touch Gavin's body today and make it line up with His Word that saysChris: I agree with Katrina...we are here and able to pester anyone that needs to be pestered.
I think Madison hit it right on the head in more ways than one...what a sweetheart. During all of this not only are my thoughts with you and Gavin but also with her. She will grow up knowing a kind of caring and compassion that will last her entire life.
Let us know what we can do to try to get you what you need.katrina: Madison sounds so precious! Ahhh, the hurdles you keep jumping. Of course I am curious if the docs might want to press the fda about compassionate use of the Omegaven. Do you need all of use to pound the phones? Because I think you have a lot of willing supporters!! Just say the word.Add a comment:
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Mon, Mar 17, 2008 10:51 PM
The day is over -- and what a busy day it was! We rushed around all day trying to time the blood, platelets, lasix, ultrasound and biopsies just right in order to make it all happen and it almost all did happen but we did not make the cut off time for the bone marrow aspiration. We are ok with that for now and are looking to hear the results of the liver biopsy later tomorrow.
Gavin is doing much better today. The blood and platelets really made a difference for him and he actually was sitting up quite a bit this afternoon. He is still so swollen and uncomfortable but it seems that with the lasix he found some relief in his belly. I can't even begin to express how badly Adam and I want to get an answer from the tests done today. What they are looking for is very serious but at least it has a name. Gavin's inflammation has been like our worst enemy without a face.
For now Gavin is fast asleep and I can only thank God for pulling Gavin though once again. My prayer for tonight is that somehow Gavin could live a good life -- not a life in the hospital.
Comments:Lynda: Gavin and your family are in my prayers daily. I pray that there is an answer soon and that he will have a full healthly life.The Gardners: We're praying that they're able to finally pinpoint the inflammation problem! Hang in there and know we're praying hard!!!Irv and Linda: We are believing God to be BIG in all of this. We continue to lift up Gavin and your whole family to the God of miracles. We miss all of you on Wednesday mornings and will be praying for you there as well!Shaun & Angela: Shaun and I remember your entire family in our prayers. We know that Gavin is not the only one that suffers when your family is split up to be in the hospital. We are still believing for divine healing!Pastor and Liz: We're praying for answers and that Gavin's life will be one ofRandy & Marilyn: Lord, give them answers today. Give them rest and strength. Know we are here, lifting you up to the Thrown of Grace.....Love you all!Add a comment:
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Mon, Mar 17, 2008 11:02 AM
The Plan:
Gavin will be getting both blood and platelets in the next hour and then will head down to the OR to his liver and bone marrow biopsy at 3:00ish. We are really hoping and praying to find some answers for his severe inflammation. He is doing a little better this morning despite the fact that his counts dropped again. His belly is still very painful and swollen but I actaully got him to sit for a few minutes today!
Please pray that Madison will have a peaceful day despite the busy day ahead.
I'll update again tonight to let you know how things went.Comments:Ron: You are all in our prayers. We pray that your next update will be that they found the source of the problem and can easily correct it for Gavin. Hang in there. RonTerri & Bruce: We are praying Karen...for Gavin, for you and Adam, and for Madison. We love you...P. Bruce and TerriHeather: Thanks for the update. You have an army of people praying for gavin and the family. Love you.Add a comment:
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Sun, Mar 16, 2008 7:05 PM
Gavin's cultures have been negative for 48 hours which means that line sepsis has been ruled out and now we are looking at other issues. We pretty much know that we are looking at the same type inflammation episode that Gavin had a month or two ago when he was very ill. With that said, we may be looking at some serious issues that need to be further explored. It is hoped that Gavin will go the OR either tomorrow or Tuesday for a liver biopsy and also a bone marrow aspiration from his hip.
Gavin's abdomen has pretty much taken over his little body and he is no longer able to sit up. He has been very uncomfortable all day and we have been working on keeping up with his pain/fever with medications. Tonight Gavin will not get lipid, which contributes to his inflammation so I am hoping he will find at least some relief through the night.
One good thing is that we know from experience that once things start to looker better he usually bounces back rather quickly. This morning his CRP was 33, which is extremely high so I'm hoping that today was his worst day out of the inflammation cycle.
Thanks for your prayers!Comments:Lisa and Michael: We will keep you all in our prayers. Gavin hang in there buddy, feel better. God bless you all!Terri & Bruce: WE ARE PRAYING...Love Ya's...P. Bruce and TerriFava Family: Our continued prayers go your way. Gavin, we know that you are a strong little guy and have the faith that you will get through this. We pray for your comfort!Terri & Bruce: WECindy Heintz: Gavin, Keep[ng you in our thoughts and Prayers. Keep fighting little man!!! You are so brave : )
F R O G and B+ alwaysRandy & marilyn: Gavin...You're a fighter and we know you can beat this! We're praying for you buddy! Adam & Karen, praying for strength and rest for this day.John & Susan: Gavin, We are thinking of you and will keep you and your parents in our prayers. We hope to see you again soon.Add a comment:
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Sat, Mar 15, 2008 8:16 PM
Sorry for the delay in updating, we have had a rather busy day. Gavin was transferred up to the general pediatric unit this evening after a tiring stay in the PICU. His fever remains somewhat controlled with Motrin though he is still very uncomfortable as his liver and spleen continue to enlarge causing his belly to be distended. Gavin's hemoglobin took a plummet this afternoon going from an 11 down to a 7 over 6 hours. We will repeat a CBC to check his levels in a few hours and if he continues to drop he will be transfused tonight.
Still no growth on the cultures, which is just so darn baffling. They just don't now why he is so sick right now. We are giving him the rest of the 48 hours for the the blood culture to grow and if there is still no growth then we will do further testing to look for other sources of infection or inflammation.
We are in a private room -- so life is OK for now!
Thanks for your prayers and messages!
Comments:Ron: You are in our prayers that the doctors will find the source of Gavin's fever and that they will be able to bring it down and Gavin will feel better. I am also praying for God to continue to grant you the strength you need to get through this. Ron Domerackikate: Thank God. Thank God he's out of the PICU. Thank God you're in a private room. 15?? I will pray and worry about Gavin all day. Here's hoping for Irish luck to come your way! I'll be there Monday & Tuesday if you need a hug. kate.Sarah: Gavin we are praying that the fever goes away quickly and you can rest! Adam, Karen, and Madison we pray for rest and peace for you all! We love you and are praying for you!Pastor and Liz: So glad you are in a private room. Thanks for updating this site, although I know you are exhausted. We're praying for rest!betsy, Ray: I'm sure this is so frustrating for you, but hoping there will be answers soon. You are in our prayers and hope you can find some rest through all of this!!Mary Alice Carpenter: You poor things. Life just keeps getting harder for all of you. Rest as well as possible and we will continue to send prayers that things improve for Gavin.Add a comment:
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Fri, Mar 14, 2008 8:44 PM
Gavin was admitted to the ICU this afternoon at duPont with very high fever. He is really struggling right now and your prayers are appreciated. I'll update when we find out more information.
Comments:tamico: sorry to hear gavin back in the hosptial hope he get out soon i will be praying for himShari: Karen: I just got caught up from being gone for a while due to no internet right now. Know I am praying for baby Gavin and your family. I wish I could be with you and help you through this. Take care, sweetie. ShariMatthew and Amy: We just read your update. I know its a day late, but we'll be in prayer.The Tobias Family: Adam & Karen, Our thoughts and prayers are with Gavin and your entire family. Keep fighting Gavin. Stay strong.Ron: We are all praying for you. Please let us know if we can do anything to help. God Bless You!!!!!!!Sandra DiCesare: Karen & Adam, We are praying for Gavin and for you guys too!!!! Gavin is a fighter and will pull through this!!! Thinking of you.......Katrina: Holding your hands via the web!! Gavin, you're so strong, you can pull through this.poppop: i love you and your family so much.i thank the lord that he has given maddy,gavin,adam and you to our family. we are praying for the blessing of our good God to fall on all of you.kate & gavin: Many prayers and positive thoughts coming your way. I'm so sorry you have to go through this. Be strong, Gavin!!!Fava Family: Praying that the Lord's healing hands will be placed upon Gavin. We pray that your family is given the added strength needed to endure and that your faith remains strong.Jenn: Oh my...Love you...your in my prayers always..Barry & Lovell: We are standing with you in prayer. We love you guys!Randy & Marilyn: Adam & Karen: We're here for you...praying for strength and peace. Love you guys!The Rich Family: we will be praying.The Stone Family: We pray that Jesus will give you all the peace strength and mercy you need to get through this. I wish I had the words to say or could take this burden for you.Shaun & Angela: Adam & Karen, please let me know if there is anything we can do for you today? We will keep Gavin in our prayers! We love you guys!Add a comment:
Welcome!
May God continue to give you victory and may His favor be upon your family!
We are always praying for you!
Continued prayers for a lengthy stay at home.