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Garrett’s Story

Hi!I am Garrett and this is my sister Peighton.  Thank you for visiting our site!  Please read our story!I was born with Spina Bifida, have a VP shunt and reflux.  I am paralyzed from the waist down. My legs don't work too well, so I use a wheelchair to get around! Garrett has Spina Bifida, a VP shunt and Arnold Chiari Malformation. His medical history is very complex to say the least! He has had 76 surgeries and procedures that have required anesthesia. His zest for life, humor and smile draw people to him! Garrett loves swimming, sled hockey, downhill skiing, playing Xbox, listening to music, watching Family Guy and any type of Ghost Adventure shows!  He also like hanging with his friends.Peighton loves listening to music, watching Amazing Race, Survivor , MN Twins, MN Vikings, and pretty much ALL the shows on ABC Family!  She also likes hanging out with her friends. They have a black Mini Schnauzer named Sophie and a white Mini Schnauzer named Daffy that they both adore!  Both are very smart, loving, compassionate, funny and beautiful kids! God is good!PLEASE remember to sign their guestbook!

Latest Journal Update

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The reason I was so sad last night with the return of the Chyle was because I knew what it meant from the surgical teams "standpoint".  It meant that we go back to the previous plan of NO fat, the high doses of Octreotide and wait...3 more weeks to see if the Thoracic duct will heal.  After much discussion between the general surgeons, the pulmonary team, and the pediatric team, we learned that YES, surgery wanted to try the Octreotide AGAIN, no fat AGAIN and wait 3 weeks AGAIN.  The Pulmonary team and the Pediatric team want to try a different path.  They want to keep the fat in his diet, NOT add the Octreotide AND clamp the chest tube.  By clamping the tube, it will create pressure in the chest area in hopes that it will keep the Chyle in the Thoracic Duct and not collect in his lung.  If it doesn't work, the fluid will fill up into his lung and NOT reabsorb.  This is all so difficult.  This is such a rare complication and such few studies done in regards to treating a Chylothorax.  All parties involved are doing their best to make the best decision....It is frustrating for them and us.  They don't like NOT knowing how to treat this issue.  It is what is keeping Garrett from getting discharged.  We are trying to weigh the pros and cons of each option and feel that we need to at least try something different.  IF the new plan doesn't work, we will know in 3-4 days.  If it does, we can look towards going home.  Both options have their own set of "risks"...

Garrett is getting stronger and stronger each day.  He can sit himself up in bed, pull himself up in bed, wheel down the hallway and for that we are thankful.  We are thankful for the WONDERFUL care he has received from the entire staff here at Children's--from the CSA's, Nurses and doctors. All have treated Garrett like a member of their own family.  The 6th floor staff has become an extension of our family and we have learned to lean on them for support during these past few months.   Our spirits are better tonight knowing that we are going to attempt a different treatment option.  If it doesn't work, we can at least say we tried and move onto something else.  We will EVENTUALLY get out of here.  We just hope it is sooner rather than later.  






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Comments

9 Comments

Betty Selders
By Betty Selders
Thanks for updating us. As we continue to pray for Garrett and all involved in his world, we praise his improvements and ask His guidance on decisions and journey of healing. Hugs and God Bless
bruce legacie
By Bruce Legacie
I sure hope it works for him!!!!!!!!!!!!! Thumbs up for trying something new!!!!!!!!! Also a Big (THUMBS UP TO GARRETT FOR BEING SO STRONG IN ALL OF THIS)!!!!! Keep on trucking Buddy)!!!!!!!!!! Your Cyber friend!!!!!!!!!!!!
Kim Schlotfeldt
By Kim Schlotfeldt
Adair are you at Childrens on Smith Avenue?
Carol Herrmann
By CAROL HERRMANN
YES - praying for sooner rather than later.
Jennifer Green
By Jennifer Green
Praying you find a plan that works for Garrett sooner rather than later.
Jennifer Green
c.o.l.e's prayer team
www.colesfoundation.org/
Vicki Schmidt
By Vicki Schmidt
Thanks for sharing this process of decision making. And for the fact Garrett is stronger. That's such good news. Prayers for more strength for him, for you and your family, and those fabulous people surrounding you there.
Gene Boe
By Gene & Gudrn Boe
Praying for you tonight for rest and peace tonight
Maryann/John Manney
By
Our dear Adair,
Sometimes I am almost afraid to open your posts, fearing a decline in Garrett's health. Then, we get an upbeat, positive message that makes me smile as I read, much as you must be smiling as you type. We are so grateful for your frequent updates. I can't believe how strong you all remain. But what else can you do?? I know I'm not the only one who has faith that God has better days in store for Garrett...right round the corner!
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1 person hearted this
Mary Jirik
By Mary Jirik