Gavin Christopher Owens
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< > April 2008
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Tue, Apr 29, 2008 8:00 PM
Another day passed at Hotel duPont.
Another few IV's lost.
No Central Line.
***sighComments:Matthew and Amy: What a sad sounding journal entry. I know its traumatizing washing the duck, but it really needed to be done. Cheer up, he'll get stinky again before you know it ;)Jenn: I love you..I just hope this passes soon so you can come back home again..give Gavi and MAdi a kiss for me...love, your sisTerri & Bruce: Karen....remember...when we can't take anymore, God moves in. HE IS MOVING IN!!! We are praying and love you guys....HANG IN THERE LIKE MARILYN SAID. P. Bruce and TerriRandy & Marilyn: Hang in there! Know there are many prayers going up in your behalf. Love you guys!Pastor and Liz: We praying for you all. Don't lose hope. Today is a new opportunity for a miracle. Blessings!Kirsten Yarnall: Hang in there Karen. Just keep thinking-We'll be home before we know it!! I will be praying peace over you and your family. Give Gavin a blessed kiss from the Yarnall Family. Give yourself some God time. He's always there to listen and sometimes to just be the comfort and support you need at the precise moment you need it. Blessings to all of you.Ron: Praying for tomorrow to be the day they place the central line and you can get ready to return home. Hang in there.sandra Dicesare: So Sorry Gavin did not get his line today. I hope tomorrow is a better day. Thank you so much for your sweet words, in Anthony' guestbook. Thinking of you, and keeping all of you in our prayers!!!!!Add a comment:
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Mon, Apr 28, 2008 6:39 AM
Monday brought some much needed structure for Madison and I, which made the day a bit easier to tolerate than the weekend. We have made some plans as to Gavin's care and are hoping to see some good results from them.
We are planing on placing an antibiotic coated central line in the next day or so. I was told that the effectiveness of the line lasts for about 2 to 4 weeks, so we are certainly looking forward to 4 weeks with no infection. Of course this is not fool proof but we're hoping for the full 4 weeks of coverage. The down side to this is that it will not take care of the yeast issues, which have been pretty severe this year. We have tentative plans to give the Amphotericin IV at home once a week to try to keep the fungus away. If you remember from last admission this drug is very harsh and makes Gavin very sick.
We lost a few more IV's last night making his grand total since Thursday 12 not to mention the many pokes to try to find the vein.
On a very sad note we have been instructed by Gavin doctor that we have to wash stinky duck. For those of you who know who this is -- it is pure tragedy. I really hate to do it but we HAVE to, for infection reasons. His system is compromised and his little duck friend is not helping the situation.
We are so ready to come home! Please pray we can get the line placed tomorrow or Wednesday!Comments:Katie: I am so sorry to hear that you are still there and poor Gavin has been through so much! Alex and I are praying hard for all his "buggies" to go away so he can get home! Praying for a new central line quickly. Alex was sad to hear about all the pokies Gavin has gotten. He is so sympathetic to all that is going on. He knows exactly how Gavin feels and wants you to give him a hug from Alex. He also said you should buy him one of the cool cars from the gift shop! Praying hard. ~Katie
www.caringbridge.org/visit/alexanderlindemann
kate: 12 IV's....I'm still processing that one. And stinky duck. I've never met him, but I'm sure that washing him is a tragedy. Good luck slipping him in and out.
I continue to keep you in my thoughts and prayers. We are taking Gavin #2 to a shrine and will be sure to bring Gavin #1 in spirit with us. I am just hoping and praying for a miracle - for both of our sons.Grammy and Pappy Owens: Hope Ducky's bath goes O.K. Was so good to see you all last Sunday. Praying the will be placed with no complications and you're able to go home soon. Love you. Hugs and Kisses for Miss Pickle and sweet Gavi.dawn: i will wash yucky ducky for you... I am obsessive about washing Ava's blankies, etc...
I will pray that he will be OK with the clean duck blanket-- it is amazing what can set toddlers off...and the last thing GAvin needs is to be set off...he has enough going on.
WE LOVE YOU!the Seymours: Praying about the plans, the line placement, and all those pokes Gavin must endure! Hope the duck bath goes well! Ask Jeff about Sunny sometime- it might quack you up!Shaun & Angela: Well, such good news that they can do an antibiotic coated central line! We will pray that it keeps Gavin infection free for 4 weeks! However, in all the good news, the washing of stinky duck is so sad! haha! I guess you have to do what they say, huh?Randy & Marilyn: praying all will go as planned and you'll be home very soon.RUBY: JESUS PLEASE GET THE LINE PLACED TODAY OR WED. AMEN. THANK YOU JESUS!Sandra DiCesare: 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: Praying! Praying! I am glad you got some good time with Madison today. I will pray that line goes in good and stays infection free. Take care and keep your chin up, sweetie!Add a comment:
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Sun, Apr 27, 2008 7:26 PM
Part of me wanted to just cut and paste yesterday's entry as we pretty much had a repeat kinda day -- very long.
In the past 24 hours we have lost 4 IVs. Last night was the hardest when lost his final two at the same time and lost all access to run his dextrose. After a team from both the NICU and PICU as well as the IV nurse, all had there pokes a vein was found on his scalp as well as in his arm.
From what I was told today, which may or may not be accurate, Gavin may be able to get his echo and line placement at the same time on Tuesday. I'm think this will not work as surgery may not like this idea but that's what I was told.
I'm kinda looking forward to Monday as it brings back some kind of routine for Madison and I. The bad part is that we are now on isolation and we cannot take Gavi anywhere -- oh well we are dealing with it.
Thanks for all your prayers and comments!Comments:Mom and Dad Owens: 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 C.: Hi Kids, Just wanted you to know you are never out of our thoughts and prayers. You must feel like you are hitting your head on a brick wall. We have no easy answers for you. Just lean on the Lord and all your family and friends who are lifting you and your family up in prayer.Love to you all GramLinda and Irv: We are praying to God to show off and be BIG in this situation! We love you and are praying for all of you!katrina: Ugh, Isolation? do we know that well. I think I watched the same WonderPets episode 20times. Ryan was lipsyncing to it by the time we went home. I am a huge fan of the OFFICE, got hooked while pumping at Ronald McDonald house in 2006-it is the perfect comic relief during these stressful times. We are still praying for all of you!!! Through the short gut support group, there are a few kiddos hanging out in DuPont. Rotavirus is out in full force, so maybe ISOLATION is not so bad! Did they give you an egg crate to put on the hospital chair/bed??? Materials management should be able to get you one.Terri & Bruce: Love you guys and are praying, praying, praying...P. Bruce and TerriRandy & Marilyn: Holding you up in prayer. Hang in there. Stay strong. the JOY of the Lord is your STRENGTH. It's so eveident in your life. Love you guys!Bill & Ruby: YES, GRACE GRACE AND MORE GRACE!!! MADISON IS A PRETTY LITTLE GIRLThe Hannum's: Grace, grace and more grace to you! And, somehow, may you have the ability to hope in the Lord, have your strength renewed, to soar (completely effortlessly) as on wings like an eagle; to keep running without wearying- walking through this trial without becoming faint! It is incredible how many at MSF have been mobilized to pray and seek greater faith because of you- be encouraged in that! Father, Lord Jesus, be Gavin's sustenance... in whatever way You deem necessary. Amen- SO BE IT!The Hannum's: Grace, grace and more grace to you! And, somehow, may you have the ability to hope in the Lord, have your strength renewed, to soar (completely effortlessly) as on wings like an eagle; to keep running without wearying- walking through this trial without becoming faint! It is incredible how many at MSF have been mobilized to pray and seek greater faith because of you- be encouraged in that! Father, Lord Jesus, be Gavin's sustenance... in whatever way You deem necessary. Amen- SO BE IT!Sandra DiCesare: Karen, Thinking of you. I wanted to let you know, we are at Dupont tomorrow. If you need anything. Please call my cell, 856-952-2657. Gavin is always in our prayers!!!! Hugs to all of you....Mary Alice Carpenter: Hope and never give in. We spent time last night with Grandma and Grandpap Cisick. You are so lucky to have them. Remember through all the trials and tribulations there are a lot of people who care and pray pray pray. How great that you look forward to Monday when everyone else dreads it! May this Monday bring you good news.Shari: I am praying for you little Gavin! Hang in there sweetie! Mommy, you too! Love you folks.Add a comment:
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Sat, Apr 26, 2008 6:56 PM
Oh what a long boring difficult day. Gavin struggled with his feed and we shut it off in the morning. We placed him back on half strength Elecare at 2cc'hr and he seems to be doing better except for the pooping -- it's nonstop! The bad news of the day comes from the infections disease team. The yeast Gavin is growing is the same yeast we had 3 weeks ago. This means that there is now a concern that there is yeast hiding in his body, particularly in his heart. The only way to get a good look at the heart is by doing a esophageal echo-cardiogram, which means he will need to go under general anaesthesia and have a small ultrasound camera placed down his esophagus and they will look at his heart and vessels. This also means a longer stay for us because if they place a new line and there is still yeast in his body the line will once again be infected and need to be pulled.
Madison had a rough day here. She did not take any naps which makes for a very cranky, demanding, out of control and sleepy 3 year old whose tolerance for being in the hospital is worse than mine. Adam plans on keeping her over at the RM House a little longer tomorrow to give her a break. Nana and Poppop will be around tomorrow so she is guaranteed a happy day.
The next issue of bad news is that they are needed to make sure Gavin does not have VRE, a nasty bowel bug, that is resistance to even the strongest IV antibiotics, which he has last year. This mean we will be placed on isolation, which just stinks. No more walks in the hallway.
Oh, It's been a rough day and I'm so ready to watch the latest episode of The Office and have a much needed laugh. Did you laugh today? Make sure you do -- you have a lot to smile about.Comments:Jon and Pam: We are thinking of you and continue to pray for a miracle for Gavin.Lisa and Michael: Karen, we will be praying for your strength and that you can get a break soon. We've been keeping up to date and Gavin and everyone is in our prayers. Hang in there- Trust in Him. Love and Prayers- Walk familyShaun & Angela: Thanks for the updates. I either get them from the site or from Dawn which works the same for me! We are remembering you all in prayer. We love you guys!Kirsten Yarnall: Hi Guys, I have been keeping up with your reports. I am so sorry that things are going the way they are. Our family keeps believing for a miracle for Gavin and the kids keep praying that God will soon show you all of the reasons and blessings to come out of this difficult situation. We feel as though we have come to know all of you through this site and just pray peace and Gods blessings into your lives daily. If there is ever anything at all that we can do please do not hesitate to contact us. We can watch Madison, We can do anything you may need done on the end of getting the Omegaven for Gavin, etc. Just let us know. Keeping you in our prayers. Enjoy The Office and laugh out loud like you never have before!!!
Kirsten,Mark,Trey,Parker&Maya YarnallMatthew and Amy: Thank you for all of the updates. Of course we do our best to remember you in prayer, but we like to celebrate the small blessings with you too. Adam and Karen, you guys are amazing. You are definitely role models of great parenting to me and Matthew.Ron: We are all keeping you in our prayers. We are praying for all of you to have strength, hope, and hopefully some good news soon. Hang in there and maybe watch 2 episodes of The Office and have several laughs. God Bless You.Tracy Fischer: Hi. Our son, Caleb, has SBS due to a midgut volvulus. I am so sorry to hear about the hard time you guys are having, being in the hospital more than not. We have had a hard road too, but we have been blessed in that we have been able to stay out of the hospital for the most part lately. We'll pray for Gavin's lines to behave and that the Omegaven would come through. We wish Caleb could have had it too, but he didn't qualify. I guess we should count ourselves blessed that Caleb was able to tolerate the Intralipid.
Andy, Tracy, Sam & Caleb FischerAunt Carol: Remember that you are always in our thoughts and prayers. Give Gaven and Madi kisses and hugs from us. We love you all and are praying for you all.Add a comment:
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Sat, Apr 26, 2008 4:46 AM
A few people reminded me that I forget to mention how the feedings went so here it is...
The night that he was supposed to begin on the Elecare full strength they never hung it up for him. So last night was his first night and although it didn't go wonderful, it wasn't as bad as I had thought it would be. He did ok for the first 6 hours but after that his formula started to come out his Gastric bag. For those who don't know, Gavin is fed straight into his intestine bypassing his belly. When we feed him in to his small bowel and then have it come back up to his belly this shows that his GI track is a little mixed up and working a bit backwards. Gavin was pretty restless all night and was moaning from time to time, but hey I was expecting a meltdown lasting all night, so thank you Lord for letting him sleep.Comments:the Gardners: What a crazy busy week for you guys, especially Gavin! You guys are in our prayers, especially for the omegaven! God's gonna open a big door somewhere in His timing! Hope the feedings get a little better...Melanie G.: We will keep praying for the Lord to grant you all continued strength. My hope in addition to the Omegaven is for Gavin to have RESTFUL sleeping nights, so Mommy, Karen can as well. I noticed an entry from Katrina regarding stating a possible "fund" for Gavin and another stating that your precious angel was chosen as this year's recipient(YEAH) from the Reading Motorcycle Club. PLEASE, if you need any assistance with either, I'd love to help. Many of us would like to do something for your family, so this will give us an opportunity. Love~ Melanie Guerrette & FamilyMary Alice Carpenter: Well at least Gavin got some sleep allowing you a little rest. I am happy to hear Madison had a good time...I'm sure you are making effort for her to have a somewhat normal childhood. I hope they get Gavin's feeds straightened out. Hang in there...better days ahead. Prayers on their way as always.Add a comment:
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Fri, Apr 25, 2008 10:02 PM
Today was a rather quiet day mostly spent fighting with Gavin's last two IV's. They are hanging in there but not without a lot of pain when infusing something through them.
Madison and I roamed the halls for most of the day and she made about 5 trips back and forth to the play room.
I did attempt to take the kids down for lunch in the cafe but when we went to sit down Gavin's IV started leaking bad and we had to come back up. Needless to say that didn't make any of us happy.
We had friends come down this afternoon and take Madi outside to play and then we had a nice dinner from Panera! Thanks John and Susan -- you'll sleep good tonight!
Thanks for all you comments, especially for the emails from those trying to help us obtain the Omegaven.Comments:Add a comment:
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Comments:kate: That's horrible. I'm so sorry. I wish there was something I could do - besides keep you in my thoughts and prayers. You're unbelievable how you're holding up through this. An inspiration, really.
kate & gavin #2Katy: Karen,
You and our family are in my thought's :(
We are here if there is ever anything you need.
Take care
KatyAli: Hey Karen. I just wanted you to know that I have been thinking of you and Gavin and your whole family. You will continue to be in my thoughts. If there is anything at all that I can do for you please don't hesitate to let me know what it is.
{{{Hugs}}}
AliShari: Karen and family: I am going to be gone for a bit and won't be able to check in you. Know I am praying for you all and will check in Sunday when I return. Love you all.Shari: Oh man! That's a huge bummer. Hang in there Gavin! Keep fighting, honey. We are praying for you!Carrie-Anne & family: Oh nuts! My heart is filled and overflowing. Little G...you are one tough cookie. I pray that God heals your owies and guides the doctors to getting you what you need. Lord...they/he needs the Omegaven. Please help those "in charge" see that. Karen & Adam...I pray for you both. You are incredible. Your strength and perserverence, God is with you and holding you!Add a comment:
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Thu, Apr 24, 2008 8:37 PM
Another long day, but not as bad as yesterday. Gavin got to the OR around 9 this morning to have his line pulled. Things did not go as planned and he did not come out with a jugular IV but rather 4 IV's in his feet -- not ideal.
He has been very fussy and saying that he hurts. Tonight we will start the feeds, which I'm just not looking forward to.
A lot of different ideas were tossed around today about what to do with Gavin's current crisis with his intolerance to lipid and his chronic infections. Hopefully we can come up with a plan that will help Gavin.
Thanks for all you kind words and encouragement!
Comments:Fava Family: Gavin, we pray for your complete healing and especially for you to be free of any pain or discomfort. Karen, Adam and Madi, we pray for your added strength, as we can't imagine how difficult it must be for you to see Gavin hurting. Blessings to all of you!Terri & Bruce: Gavin...P. Bruce and I are praying that God will move in a do a miracle at this time...May you all feel His presence and His peace at this time ..Phillipians 4:6...we love you...P Bruce and Terriheather: my heart just breaks to hear this. Im praying so hard for everyone. I hope that the doctors can find a good solution for Gavin so you guys can come home & enjoy time as a familiy. I love you all.kate: i am thinking of you often and looking forward to a day when we can somehow, someway get our gavin's together. wishing you luck tonight!!!!
kate & gavin #2Lovell: Aahhh, Gavin, you are one tough little boy! We are praying for a breakthough for you and an effective, pain free plan. We love you and miss you!Shari: Poor baby! Praying that something can be figured out for this little guy! He deserves so much more! Love to your family.Add a comment:
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Wed, Apr 23, 2008 8:10 PM
So today has been a VERY bad day for little Gavin. We found out that in addition to the klebsiella (bowel bug) that he is growing in his line he is also growing yeast again!!! I can't even tell you how horrible this is. This means we loose the line that was placed just 3 weeks ago. For those of you who don't understand, Gavin can't just keep getting new lines. Eventually we will not be able to place anymore and that is a very scary thought since his life depends on these lines.
On top of that news we also found out that Pittsburgh said "no" to the Omegaven because they are only set up to give it to children who are listed for a small bowel transplant. Dr. Raab started to fill out the "compassionate use" form to submit to the FDA, which basically states that Gavin's life depends on the Omegaven.
We are going to try to run feeds tomorrow night starting with FULL strength formula at 2 cc's an hour. Gavin has never tolerated half strength yet alone full strength. The reason for this is to try to give his extremely atrophied bowel nutrition. The cells on the inside wall of the bowel, which allows the bowel to function, can only receive nutrition from the inside not from TPN and since Gavin has not been fed in almost two years this creates obvious issues.
We are going to be placing a jugular line tomorrow in the OR to try to prevent loosing IV access, which happened during our last stay.
Needless to say we are going to be here for while.
Thanks for you prayers we need them right now!Comments:katrina: We have been in that deepest valley, desperate for Omegaven and having a transplant team knocking on our door. I am praying for a miracle. Do you need testimonials? I know the doc needs to provide his curriculum vitae and protocol for compassionate use. The hospital would also have to agree to provide the inital supply of Omegaven. They are not allowed to bill the family. That's how we got Ryan on it. I wish I could help you more. Perhaps family and friends near you can start a fundraiser for Gavin to help "fund" the hospital's foundation...to be used for Omegaven. Don't forget, there are many hospitals across the country obtaining Omegaven for kids. I can send you the list if you wish. But I know at this time, all you care about is that sweet boy feeling better a.s.a.p!!!M.G.: I will pray for a change in Pittsburgh's decision for the Omegaven & that precious Gavin can tolerate the full strength dosage of formula. Melanie & FamilyBeth Taylor: You are all in my continuous prayers. We have a miracle working God and I am believing He will intervene and bring you all peace and healing.The Luna's: Father, Be Gavin's lifeline. In Jesus' name, Amen.
Fava Family: Gavin,
We are so strongly praying for your body to be healed of any infections and for you to be able to tolerate the nutrition that your body so badly needs. We pray for your IV sites to stay patent and for your family's added strength.The Hannum's: Father, break into that room, these lives, that little body, and manifest Your power to heal, restore, and revitalize!! Be their refuge & strength, sustain them to a victorious end to this story.
- We will not stop praying for you all, and I know we are are not alone....Matthew and Amy: We never like to see the words "VERY bad day" in relation to Gavin. Say no more, we will pray pray pray for God to intervene for your son's life. Stay strong.dawn: Psalm 18:28 + YOu, o Lord, keep my lamp burning; my God turns my darkness ijnto light. With your help I can advance against a tropp; with my
God I can scale any wall. As for God, his way is perfct; the work of hte Lord is flawless. He is a sheild for all who take reruge in him. For who is God besides the Lord? And who is the Riock except our God? It is God who ARMS ME WITH STRENGTH and make my way perfect...He trains my hands for battle' my arms can bend a bow of bronze. YOu give me your shield of vistory, and your right hand sustains me..Pastor and Liz: We contintue to pray and believe for a miracle for Gave and sustained grace for all of you!Randy & Marilyn: You are continually in our prayers. Trusting your day will go well. "Lord, give them Your Strength for this day."Chris: I bet you don't realize how many people are praying for your family. Any of us that have children can only imagine the heartache you are feeling. Please know that even us strangers out here have you in our thoughts.kate: there are no words. only fervent prayers and lots of positive thoughts for your family's emotional well being. big hugs to you....
kate & gavin #2RUBY & BILL: LORD HAVE MERCY ON THIS FAMILY! KEEP THEM IN YOUR HOLY GRIP!!RUBY & BILL: LORD HAVE MERCY ON THIS FAMILY! KEEP THEM IN YOUR HOLY GRIP!!RUBY & BILL: LORD HAVE MERCY ON THIS FAMILY! KEEP THEM IN YOUR HOLY GRIP!!RUBY & BILL: LORD HAVE MERCY ON THIS FAMILY! KEEP THEM IN YOUR HOLY GRIP!!RUBY & BILL: LORD HAVE MERCY ON THIS FAMILY! KEEP THEM IN YOUR HOLY GRIP!!RUBY & BILL: LORD HAVE MERCY ON THIS FAMILY! KEEP THEM IN YOUR HOLY GRIP!!Betsy, Ray: This is an another bump in the road for you guys, but Lord willing you'll get over this hump like you did the other ones....hopefully these bumps get less and less....you are always in our prayers.Mary Alice Carpenter: My God My God please give these kids a break. Let the FDA find in their favor and send the Omegaven for Gavin. If Madison doesn't grow up to be a professional in the medical profession I will be surprised! Prayers for patience and quick answers to all Gavin's problems.Add a comment:
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Tue, Apr 22, 2008 8:58 PM
***Edit: Oh, Crap. scratch every thing I just said. Things can change fast with Gavin -- and they did. We will be here a lot longer. I write more tonight.
We had a fairly uneventful day today, which is always a good thing! This morning in typical Gavin style he chewed right threw his GJ tube causing a massive explosions of GJ juice all over himself and central line! We were able to grab a spot down at IR and had it replaced this afternoon.
Gavin had a slight fever today but most likely from his lipid and not infection. He dropped his red blood cells and platelets overnight so he will most likely be transfused tomorrow. He also started with some swelling, which we are praying is just a slight response to the infection and not the beginning of systemic inflammation -- time will tell.
Madison had a great time this morning working with the therapy doll. She was told she could keep him in the room all day, which obviously just made her the happiest girl around!
We/Dr. R still have not heard back about trying to get the Omegaven. Dr. R said that we are going to try to get it from Pittsburgh Children's Hospital, who are giving it to some of their kids. This is a positive since we could possible push Gavin's PA medicaid to cover it if Aetna denies us. This is our biggest prayer need right now.
We are hoping for another quiet day tomorrow!Comments:katrina: Hey we doing a hospital stay too, i tried typing the other day. ryan has rotovirus can you say s*h***t!!!! so happy this dx gives you more ammo for omegaven!!!Katy: Your family is in my thought's I hope it won't be long until we see you guys again. Take care
Gram: So glad you had such a long period at home. It sounds like the doc. may be able to pull some strings to get our little guy on Omaga- We are praying it all works out. luv to you all GramBarry & Lovell: I have to tell you that I started to laugh when I looked at all the pictures. Alex is as big as Madi and Gavin looks like he needs a pile of snow to ride his RED sled on :>).
We are so glad to hear that Gavin now has a better chance at getting the Omegaven. I know this has been a prayer of yours for a long time. Thank you God for answered prayers! We will continue to wait and pray for the complete miracle! We Love You!!The Marculo Family: We are trusting that healing and victory will be coming your way pretty soon!May God open the right doors for your family regarding Gavin's treatment.
Blessings,Debbie Heisey: Let me try this again. Praying God's best for you today. Knowing that God is overseeing every circumstance and orchestrating every detail for your family. I am so excited for Madi that she got to hang on to "Alex" for the day....How cool is that! Be blessed and be safe in Him. ~DebDebbie Heisey: Praying for God's best for you today. Knowing that God is overseeing every circumstance and orchestrating all the details for your family. I am so excited for Madi that see got to hang on to "Alex" for the day....How cool is that!! Be blessed and be safe in Him. ~DebRUBY: THANK THE LORD FOR THE 3 WEEKS OF- NO HOSPITAL!WE CARE!Add a comment:
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Tue, Apr 22, 2008 4:46 AM
Yesterday morning Gavin's cultures grew out. We are now waiting for the exact bug so we know how to treat him. His fever is gone and now we just have to wait for two negative cultures.
We also found out that Gavin's bone marrow biopsy came back positive for Macrophage Activation Syndrome. Basically this is triggered by the lipid in Gavin's TPN and creates an autoimmune response that mimics sepsis.
Although this sounds like a negative it actaully is a very positive indication for the Omegaven. We now have something on paper saying "look, this is making his very sick!"
Today Madison has an appointment with the Child Life Specialist who is going to work with her on the therapeutic surgery doll "Alex". Needless to say she is super thrilled and hopefully will keep her occupied this morning.
Thanks for you prayers!Comments:dawn: I know it does sound weird, but getting a "diagnosis"is a good thing. I know you have been running around and having symptoms but nothing to "claim" for this new treatment. So, in a weird way, I am happy for you and I am praying for quick approval for omegaven. I am glad that Madi is getting something extra while she is there...therapy for her is therapy for you I am sure!love ya much!Add a comment:
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Mon, Apr 21, 2008 3:49 AM
Well, here we are again, back at duPont. Not long after hanging TPN Gavin spiked to over 104 again.
You know the drill -- we wait for blood cultures to grow.
Thank you Lord for THREE great weeks at home!!!Comments:The Hannum's: Karen- It WILL be well with you, and with your family... God said so, and He doesn't lie. Along with everyone else, we add our prayers, for your patience and peace in the 'now' and your victory in the long term. If Omegaven is God's will for you all... let it be so, and quickly!!!debbie & jeff: Home through the entire fast- how awesome! Now we wait- believing for the breakthroughs! Lots of love and prayers for all you need/desire!dawn: Karen- you are a great mom! Hang in there, we are all pulling for the new treatment. Hey Adam, don't want to forget about you either--- we admire the way you support your family and HAVE to be away from your baby boy when he is sick during the day. You guys are awesome and we are fighting for your family in prayer.
Mary Alice Carpenter: You poor kids!!! Gavin please allow the strength of all the prayers heal you quickly this time and take you back home. We are praying for all of you. 3 weeks is a blessing...3 months would be a miracle...God Bless you all.Lisa and Michael: Not sure what happened with that last post, we wrote that 3 WEEKS is awesome, praise God! And that we will be praying for the omegavin! Hang in there! God bless! - The Walk familyLisa and Michael: Three weeks! Way to go! Hoping and praying for the omegavin... keep staying so strong! - The Walk familyCindy Heintz: Hey little man....Hope your stay is short and your feeling better real
soon. Keeping you all in my thoughts and Prayers. Hope they can get the Omegaven real soon.
F R O G and B+Shari: I hope the Omegaven can be done and it helps. Praying for you all!Melanie G.: Karen, Adam & Maddie: Keeping precious Gavin and ALL of you in our thoughts and prayers. Looking forward to getting our children together again soon. Your kids are so well-behaved I'm hoping some of it will rub off onto mine. Love~ Melanie & familySandra DiCesare: I know how hard it can be. We are thinking of you and praying for your strength. Praying you are all home soon!!!! Hugs to all of you.Fava Family: Strongly praying that Gavin gets approved for the Omegaven that his body desperately needs and for his fevers to subside. We pray for his energy to return and for your family's continued strength. Through all of this it is wonderful that you remembered to thank God for the three weeks you enjoyed at home as a family! Our love and blessings remain with you guys.kate: Karen, you're right - three great weeks is something to be very thankful for!! I wish you a short stay, your own room and Omegaven.Randy & Marilyn: Awe, Karen & Adam, So sorry you had to go back to the hospital. Hang in there, we'll pray it's a short stay. Love you guys!Add a comment:
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Sun, Apr 20, 2008 7:22 PM
Sorry for the lack of updates -- we have been so busy trying to fit everything in before we have to go back to the "dreaded place."
Gavin is having a very rough time these days. Last night he had a fever of 105 after hanging his lipid. He was looking very sick and when I say sick I'm not talking about flu or cold sick it's more like septic shock sick. We stopped his lipid and by the morning his fever had subsided. Today he has been very lethargic and just not himself.
I talked with his Doctor this morning and he felt that it is the lipid and that at this point we don't need to come in for cultures yet. He also feels that Gavin is in great need of the Omegaven. He is hoping to make a few calls tomorrow up to Boston and possibly Pittsburgh to see what we can do to make this happen.
We may need to go in tonight if his fever goes over 101. We'll see what happens. Most likely a stay at hotel Dupont is in our near future.Comments:The Rich Family: Praying for the Boston thing to really happen this time. Thanks for the updates. Your family is in our nightly prayers. And it is always the kids who remember him and they don't even know him. How cool is that. Also will pray that you stay home ,fever free. God oves youkatrina: we are headed to Riley ourselves at 4 a.m, keeping you in prayersAdd a comment:
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Wed, Apr 9, 2008 2:10 PM
We are still home! Yippie! We are going to try to do a few new things, such as bolus Gavin with some fluid and try to add some fish oil in his diet, to keep him here at home.
The major concern right now is that, tonight due to Gavin's weight loss and dehydration, we are going to have to give him lipid in his TPN. For those who forgot -- the lipid is very bad. Lipid equals high fevers and swollen organs. very bad.
We hate lipid.
It's the worst.
Do you get the point?
Please pray that Gavin's body will tolerate the fat and he can get some much needed nurtition. the dreaded duPont will be checking in with us tomorrow and making the descision if we can stay at home. Oh' please. please. please. please.Comments:Add a comment:
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Tue, Apr 8, 2008 5:23 AM
11 days! E-l-e-v-e-n days! Can you even believe it? This has been the best week and a half of my year. We had a great week doing normal family things -- it was wonderful. Adam and I are really choosing to live life and it has really made all the difference for our family.
Gavin, as expected, has been loosing a lot of weight and is have major issues with feeds and stooling but other than that is happy as ever! We had a PT consult yesterday to discuss some adaptive equipment to help make his and my life a bit easier. I am looking forward to trying to get connected with duPont regarding an adaptive stroller for him so we can more effectively lug around all his equipment not to mention him!
Madison had he 3 year well check this week, which was just so much fun! She loved it and was given a great bill of health. She is 95th and 95th for height and weight! be sure to check out her blog and she posted pictures of her visit! (link is at bottom of home page)
With all that great stuff said -- last night Gavin spiked a high fever. I wanted to put in a great post before I have to make the dreaded "Gavin was admitted" post. We are praying it is just a fluke! Thanks again for all your continued prayers!Comments:Debbie Heisey: Thanks for the update. Glad to hear about your past 11 days at home and that Madi is healthy. I am continuing to pray for God's provision for your family and for Gavin's high maintenance needs. In my own life I have to keep in mind that our hope is not measured by our circumstance, but in Christ. Be blessed and be safe in Him! ~DebAdd a comment:
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