Gavin Christopher Owens
- May 2008 (3)
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Most Recent
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Thu, May 8, 2008 9:39 AM
So far so good! Although Gavin has been very weak and is having some fevers with his TPN he is doing great. We have been spending most of our days outside playing and enjoying life.
Please consider donating blood in honor of Gavin on May 22nd at Morning Star Fellowship. Please visit my blog, linked on the home page, for some life saving information on blood donation. Please contact the church @ 610.369.1960 to schedule a time or sign up at the information desk.
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Comments:the Gardners: YEAH! We are praying that you guys can enjoy your time at home! Hope the new stroller and pump are working out and you are feeling blessed! Please, keep us posted about the blood drive as Matt would love to do it!Fava Family: Thank you Jesus for bringing Gavin and his family home! Please continue to bless them and to make Gavin grow stronger every day. Please allow them to get all of the medical necessities that are needed to heal Gavin and to make their lives easier. We will continue to pray for your family's strength.Matthew and Amy: YAY!!!!!!!!The Biker Church: The Biker Church is praying for all of you!!!Melanie G.: May your time at home be relaxing(as well as it can be) and peaceful. Our prayers & support are with you all. Melanie Guerrette & FamilyRon: YEAH!!!!!!!!!!!! Welcome home. We continue to pray for all of you every day.katrina: Good to hear!!! Now go play!!!!The Rich Family: Yea!!!!!!! ENKOY!!!!!!!! Take it all in !!!!Shaun & Angela: I almost called you yesterday to see if you were home! We are so happy for you all. I know life is at least more normal for everyone including Madison when you are home! We are praying for another 4 or more weeks of being home!Ali: I am so happy to hear that! I hope to see you soon!
Enjoy!Katy: I can't wait to see you guy again.
I am so happy for you.
Randy & Marilyn: Praise you Jesus! So glad to hear you are home. Have a Blessed day! Praying for you.......The Hannum's: Yay, yay, yay God! Good for you guys! There is much rejoicing in our house knowing that you are in yours! And a strong confirmation of Debbie's sentiment- your steadfastness through this is an unmatchable faith builder. Your need has inspired a committment to pray in my sons like nothing I've ever seen. My youngest talks to God about Gavin all the time... sometimes you even make it into 'saying grace'! So let me add my thanks, as well...Shari: Yay! I am so glad you are home. I am continuing to pray for Gavin and your family everyday.Debbie Heisey: Hallelujah! I am praising God that you are home. Also, glad to hear that you are getting the pump upgrade...the kangaroo is soooo last century! Seriously though, I can't imagine how difficult things have been for your family, but this I do know, your family is such a blessing to so many people. Our struggles do not define us,our identities our found in Christ and in Him is our strength. As I read your families blogs, your genuine faith shines through and it encourages me in my faith in the midst of my own struggles. For this, I thank you. Be blessed and be safe in Him! ~DebAdd a comment:
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Thu, May 1, 2008 12:18 PM
For those of you who check this site often, sorry for the lack of updating. It has been a rough past 24 hours. Gavin has been very bradicardic (low heart rate in the 50's) and he has been becoming more and more lethargic.
We receiving a lot of disappointing news today including that we are not able to place the antibiotic coated line. This line is not made with a cuff that sits under his skin to keep the line in place. The risk of it falling out is very high and can be life threatening. Gavin is back in the OR now getting a new double luman regular line.
Gavin continues to not tolerate his feed and they have been shut off since last night. We hope that once we can get him some nutrition from his TPN his body will "wake up" and be able to tolerate more through his gut.
We have an appointment at the duPont seating clinic next week to get Gavin's adaptive stroller. I'm very excited about this. We are also getting a new infinity feeding pump, which for those who use it, know it is the best and puts the stupid kangaroo pumps to shame!
After Gavin comes out of the OR we will do labs to make sure he does not need any blood and then we may be able to go home tomorrow.
We are planning a blood drive through Miller Keystone in honor of Gavin to help replenish the blood supply that he has used. Many people ask how you can help our family -- this is one practical way. Gavin and so many other children depend on the donation of others. I'll keep you posted on the date and time.
Thanks!
Comments:Katie: I am so glad you are home. There is no place better! I never knew that about the antibiotic line...bummer! You will love the infinity pump. Both kids have it and I wouldn't trade them for the world! You'll never know how you survived with the other! Make sure to get the little backpack to go with it! Take care and enjoy the time at home! I have a gut feeling we'll be back at the Hotel DuPont very soon!
~Katie
www.caringbridge.org/visit/alexanderlindemann
Mary Alice Carpenter: Home .... no place like home. Thank God. Things must have gone your way for now. Hope the new stroller makes it easier for you to get Gavin around and take the kids for walks as Madison gets a twinkle in her eye when she is outdoors. I hope the appointment this week bring you some hope for the future. Prayers on the way.dawn: I am happy about the new "wheels" he is getting!
Sorry about the line..that is a bummer.
we love you!Barry & Lovell: We are praying that the line and the TPN is working and that Gavin is gaining strength every hour. So glad to hear about the "long awaited" stroller. Hang in there! We love you guys!Shaun & Angela: Praying that everything went well yesterday and that you are able to bring Gavin home today!Christine: Donating blood is a wonderful thing. Many lives are saved by that simple act. I am hoping that the next few days brings positive changes to your family.Add a comment:
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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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We ALL miss you at Moms Club, but are wishing you a stress-free(if that's possible) weekend at home. I will definitely be contacting M.S. Fellowship Church to donate blood.
Enjoy the rainy day inside with your kids!