Update: Prayers for Samuel
 

Hello everyone,

Thank you all for your prayers and support, I know Jacqui started a thread about Samuel. Thank you Jacqui for keeping everyone updated when I can't. Ok as many of you know my 2 year old was diagnosed with a Chiari malformation a few months ago, long story short he was referred to a neurosurgeon and we were praying that they would be able to monitor his condition and she (neurosurgeon) had that same hope as it didn't look that bad. But she needed to get an MRI of his spine to rule out a tethered cord etc., we took him in last Wednesday for that. Sammy was sedated and scan preformed. He had a really difficult time coming out of the sedation this time and had a lot of vomiting so we kept him in a quiet room, lights off me rocking him until the doctor was ready to see him. When they were ready we took him straight into the room and doctor came right in and I could tell she really just didn't want to tell me. Unfortunately they found (short name) a syrinx, which is a collection of spinal fluid about mid way up his spine and it is causing a "significant" space. It is due to his Chiari and they have no choice but to operate to fix the Chiari. We called his pediatrician and other doctors everyone is in agreements. They wanted to do it before Christmas, but I asked if they could wait and at least let him be happy and pain free for the Holidays she said yes but that we really needed to take care of it afterwards. His surgery is set for January 15,2013.
Words really can't express how devastated I/we are. She was very upfront and honest about how serious it is and the amount of pain he will be in. The surgery itself will take about 4 hours and then he will go straight to ICU were he will remain for the first 2 days sedated. The are concerned because of his sensory issues (not knowing if the surgery will fix that) how he will handle the pain as well as how he will wake up from the anesthesia (because of the previous vomiting) so they don't want him vomiting or straining and possibly tearing the graft that they will have put in place when they remove a piece of his skull, because that would mean they would need to go back in and repair it. Then they will slowly start to wake him up. He will likely be in the hospital 5-6 days.
In 6-9 months they will repeat MRI to make sure the syrinx has corrected itself. If it hasn't and the initial surgery has held not a lot of scar tissue or any reason to indicate it wasn't a success then they will have to operate and put a shunt in to drain the fluid.
His doctor is a pediatric nursurgeon who has preformed this surgery many times over, she actually did one the day before she had to tell me about Sam. Please only post positive comments, yes we've had other opinions etc. I don't need to go into this second guessing myself or his doctors. I'm trying to hold it together and do what's best for my baby.
Again thank you all for your prayers and support, well wishes etc. Right now our focus is making sure Samuel has the BEST Christmas ever. My faith is strong it has NEVER wavered, but I am human and a mom and I carried this lil boy in my womb, put my life on the line (literally) to have him so I'm hurting in a major way! But I know that God has a purpose and a plan for my Sam's life and even though I can't see it right now through my tears, I still KNOW it, he will do GREAT things!

i am so sorry your precious baby boy is having to endure all of this testing and surgery. i can tell you as a mother of a child who had an 8 hour long spinal surgery...they have miraculous healing ability at a young age so that is on his side. I will keep you in my thoughts and prayers. I WISH YOU AND SAMUEL JUST THE HAPPIEST CHRISTMAS EVER. hugs to you.

Wishing you all a great Christmas. And will keep your family in my prayers. I agree God has a plan.

May God be with you now and through his surgery Jan. 15.

You and your sweet boy are in our prayers.

Wishing you all a Wonderful Christmas. Keeping you, Sammuel, and the family in my thoughts and prayers, and in my heart.

Keeping Sammy and your family in my prayers. What a brave little boy he is. I'm glad they are going to let him have Christmas before doing the surgery. Cyber hugs to you!!

Tracy you are a wonderful Mom and person! I will be praying for you all. I am a phone call away if you need me. Love you!

Prayers for you, your family and Sammy. May God's love and blessings surround your family.

I just emailed you today Tracy to let you know I was thinking of you and Sammy.

Oh my...that's quite a bit for such a youngster and his family. I have some idea what you are going through...my older son (3 yrs. old) and his daughter (4 yrs. old) both had open heart surgery, and my younger son would have seizures and quite breathing, requiring resusitation. I completely understand wanting to make something critical wait for the child to have a happy holiday...that is why my older son's open heart surgery was postponed until after Labor Day. It also gives you a bit of time to catch up mentally...very important...because such things are whirlwind.

No one has a firmer grip on believing that we are given only what we can handle, despite not believing ahead of time that we'd ever be able to do it. It is with firm conviction that I send my sincerest best wishes to you, your family and Sammy for the best holiday of his life up to now, with an even better one every year thereafter. At least you have good medical staff, and a positive outlook, and tons of YT'ers in your corner! :D

Happy Holidays! Get better quick, Sammy!!!

Tracy you know I'm here if you need me...just 10 digits away...love you girl/sis! As always you are in my prayers....

I really can't thank you all enough for your support, well wishes and prayers! Alisha, I'm on my way to check my emails now sorry. Morgan and Jacqui, thank you both sooooo much for everything. Thanks everyone!:)

praying for you and the little one

Prayers do still continue for Samuel. I will be saying prayers for the surgeons to guide their hands for a successful a surgery.

Sending out lot's of hug's to your family during this difficult time.

I am sorry your little one is having to go through this, but reading your post I really believe God has a big plan for Samuel. God will be in the operating room too guiding the surgeons hand. I will be praying for him every step of the way. I wish all of you guys a very Merry Christmas.

Your little boy captured my heart from the first moment I saw him. I hope the holiday is filled with many precious moments and I wish for you and Samuel much health and countless blessings.

Tracy, sending prayers for Samuel. I pray for that he has a wonderful Christmas and that his surgery is a success.

Philippians 4:6......I'll keep him and all of you in prayer.

Tracy, I'm thinking of you and your precious sweet boy, Samuel. May God keep his loving arms wrapped around your whole family and Bless all of you with the best Christmas ever!

A prayer goes out for your little one. May he have a happy Christmas and successful surgery in the New Year. My heart goes out to you in this time of worry. {{{{hugs}}}}

Tracy, try not to worry as I'm sure the Dr is Very good & sounds as though she's had lots of experience in this kind of situation. I will be Praying for Sammi & I'm sure when he's all healed up, he will feel sooooo good he'll be heck on wheels. This situation in his spine is most likely causing his eating problems as it's causing nausea & discomfort in his little tummy. I'm sorry to hear of his diagnosis but very happy that you have found what sounds to be the Perfect Dr for him.

Ok even though I'm bawling again reading all the comments, I really just want to tell you all THANK YOU! Each and every one of you and if I could personally hug each and every one of you right now, I'd be on your doorstep with Sam doing just that! I can't tell you how much your prayers and support means to me. Yes it's a difficult time BUT GOD'S got THIS! You guys are so awesome and I pray that God will touch each of you and bless you each 100 times over for every prayer that you utter on Sam and my families behalf!

Dear Tracy, Sammy and family. I've been following your journey on the original thread.

Please know that you are in our thoughts and prayers. I hope you can enjoy the Christmas season and fill it with many wonderfully magic moments.

I know 2013 will bring new beginnings to Sammy.

I will continue to keep you, your family and the medical team in my prayers.

Blessings from Canada.

Janet
xo

I´m so sorry this is happening to you´r baby
I´ll have both of you in my prayers and hope you have the best x mas ever

Thank you ladies so much :).

Tracy my heart goes out to you during this time. Little Samuel has all the love sent to him. Good thoughts and blessings to him and your entire family. His surgery is the day before my birthday. All my birthday wishes go out to him. Big hugs to you both. If you need anything don't hesitate to ask.

Tracy, I'm so sorry I didn't see this sooner....I will pray every day for Samuel, for you and your husband...I'm so, so sorry for this...keep the faith sister, keep the faith...

Come Gracious Spirit, Heavenly Dove,
With light and comfort from above.
Be Thou our Guardian, Thou our Guide,
Stay close by Samuel's side. Amen!

I can relate to what you are going through. One of my son's had a serious condition when he was young like yours. I also am/was a Christian and was believing God for the best but as you said the reality hits you in the face daily. Surgery is a scary thing for anyone but it is especially difficult for a parent to turn their child over to even the best of doctors for surgery.

Stay close to your bible and find as many comforting verses as you can to keep your mind from slipping into fear. The word is your greatest offensive weapon in this battle.

I'll be praying for you and your family.

Keeping little Samuel and you in my prayers.

Tracy, I'm just now seeing this about Samuel and trying to imagine the fight between faith and fear your spirit must be waging right now. I, too, am one of those who fell in love with little Samuel the moment you shared his story and told us all about your littlest angel on earth. Samuel's simple child's faith and his ability to articulate it are so life-affirming in one so young. He must be a constant, walking inspiration to all who have the pleasure of knowing him. Now that this child is facing his toughest challenge in life, remember what Christmas is all about, that God so loved the world that He sent His very own Son to us on this earth for times such as little Samuel faces. You are not alone so long as you and Samuel have the One who invented miracles. He will tend young Samuel with the tenderness of a mother and battle for his precious life with the fierceness of a warrior. Samuel couldn't be safer than in His strong arms throughout the surgery to ready him for his life's work to come.

My favorite verse has always been Isaiah 41:10. I long ago memorized it and keep it in my heart for life's hardest hours.