My little man

Close your eyes my little man so sleep is yours to find
Now feel the sun upon your face and the prickle of the grass below
Hear the trickling of a stream and the summer breeze blow
Ride your trike down open paths no cords to hold you down
And when you find a muddy hole no longer will I frown
With small dirty hands and smudges on your cheeks
I'll hold you close the smell of boy and grass and dirt so sweet
And in your dreams of far away I hope they take you home
To story times and hide and seek through the hallways you once roamed
Dream of make believe with giggles and pretend
Where there are smiles and happiness that has no end
Oh my little man, my little baby boy
I'd give the world, my health, my all to bring you all this joy
I never knew I'd love so much or yearn so deep as i do for you
To pray that when the morning sun finds the morning dew
That God above will look below on this little man
And make him whole and strong and well just like I know he can
To let him feel the sun again and the grass between his toes
To run wild and free to the places little boys will go
So as he flutters off to sleep and dreams his andventourous plan
please God bless my little man

Tuesday surgery.

The last few days have been good days. Tonight I am vividly reminded that no matter how good the days are little boys don't belong in hospitals. They belong at home simply being little boys.  The doctors told us that they will operate on Tuesday. We really feel like we are at the best place we can be. Dr. Fish man is the best there is. Originaly it sounded like they would do surgery on his tummy and on his thoracic duct. They feel like his thoracic duct is sluggish and that is what is causing the problems. They had a special meeting where 25 plus doctors get together and talk about special cases. Usually just three or four a week. Garretts condition is unlike anything they have seen here, it just doesn't present itself like this. We are blessed to be someplace where they have the knowledge they do to handle it. After talking it over they are just going to operate on his tummy and pray it will all be okay. He is so smal that his views are also small, even if the first surgery just buys time. They will feed him a full cream diet the night before do it increases the chyle in his system and hopefully makes the leak easier to see. Also on a bright note after two weeks they let him eat!!!!!!! To say he was excited was an understatement! We fed him some macaroni, toast, and a graham cracker:) he loved it!

My family sent a box today that had everything I could think to put in a box to keep s two year old entertained. The best thing it had was all the love, thoughts, and just feeling of home wrapped tight inside. How blessed I sm to have the support system I do. I'm pretty homesick right now. I'd give anything to see the green pastures outside my window when I wake up. To shell the barn while I get a bucket of grain and yell to the horses to come on do we could get saddled up. I miss the mountains, I miss the ditches, the smells, the taste of the air, the people, everything, I just miss home, I miss my family.

Tonight is jacies wedding and little Maggie is in Idaho with the girls. I miss my baby and can't wait to take Garrett out of here. To see the two of them play! No more chords or beeps, no more needles or blood pressures. Just trikes and swing sets. Rolly pollies and grasshoppers. Kittens and chickens. Day in and day out plain boring life. I'm ready I yearn for it.  I pray that somehow our pleas to heaven will be heard, that our little family can be together, happy, healthy and whole!

Well a lot has happened and a lot hasn't happened:) on Saturday night we flew on a medic flight to Boston Children's. They have more technology and they are the best in the nation for genetic abnormalities. We ran a lymphangiogram hoping to find the source of the leak. It was a long four hour test. I think both john and I were confident they would find a leak. They didn't. What we do know is Garrett has done abnormalities on the left side of his lymphatic system. They also think his thoracic duct may not be working like it should causing backup into his system. Dr Fichman came in yesterday to talk to us, he feels like doing a surgery on his intestines and his thoracic duct would be probably the best approach. I don't think he feels like this will get better on its own. Right now there is about 1000 ml of output a day. They have a meeting every Wednesday where a whole team of doctors will review his case and make some decisions.

Garrett got to go to the playroom he loved it! He is also on a clear liquid diet so he is a Popsicle fanatic. After several days of nothing he thinks he is in heaven.

When they had him in for his last test they put in a new pic line that is a double tubes one so they were able to take out his other iv's. That has been really nice. He hated the saline going in and acted like it really hurt him. They haven't poked him since we got here. It is emotionally better on everyone.

Maggie is in Utah, she acts a little ticked at all this. I'm so grateful for my family al the help with mags and all the prayers. Through all this we find we are truly blessed.

My Maggie my love

Maggie ann, I'm getting ready to get on a plane and fly to Boston with Garrett. I am more than a little scared there are a lot of unknowns but hopefully answers waiting in Boston. I want you to know I love you more than anything in this world. I have raised you to be strong, never lose that. You can conquer the world. You come from a line of strong women, look to them for direction, for support, for strength. Always stand tall, stand true and know that if anything I've ever done you and Garrett are my greatest accomplishments. Being a mother to you has been the greatest joy of my life. Letting you go to Utah was one of the hardest things I've done. I knew how loved you would be but the thought of you clear across the country from me is almost more than I could stand. I love knowing you are with me day in and day out. I will always be with you, always. Hold your head high my little one, choose the right, and wise, and be kind. Always know how loved and wanted you are.

I love you,

Mom

24th

The 24thhas always been my most favorite holiday. It's the one day a year when everyone slowed down and enjoyed the sweet pleasures of living. This will be one 24th I will always remember. We sent Maggie home to Utah with Emily yesterday. To say it was hard is an understatement. I can't wait to just be mommy again. To find joy in the journey of kissing owies and finding monsters. Ready to be done with machines, monitors, needles, and tears you can't fix.
My love for john continues to grow, I continue to be grateful that he is my forever. He has worked tirelessly to get us into Boston. How grateful I am that he's by my side through all this. Right now we are waiting on a bed opening up. John has been researching our doctor, he is as good as there is so hopefully we will find some answers.

Garrett is getting so he hides under the blankets when the nurses come in. He wants nothing to do with any of them. The nurses here have been amazing. It makes me glad Birdy is a nurse, it means the world to have someone who cares on your side.

Right now they have him on octeotride which is a growth hormone inhibitor so Garrett if your short someday we are sorry. He is on tpn and lips which means all his food is Iv. They have him on a strong antibiotic and nexium. There are tubes everywhere. He has you kiss his little hand with the Iv better several times a day. We have had some hard days, really hard days. Today is a good day.

Right now it's just praying and waiting. The flow has slowed down. He is fasting 100% and that has been hard. He has been pretty angry he can't nurse. It was his one comfort.

Through all of this we feel so blessed for all we have. All our family fasted and prayed for him yesterday. Emily has been here all week. How blessed we are for family. When it comes down to it they are everything.

4:00 am labs

Your drain is finally working and we are waking up with dry sheets! I feel like we can measure your output a lot better. They have taken off about 450 cc in the last four hours. They are giving you more albium to replace what they are taking off in the drain. This is also when the run you roseferen, I doubt u spelled that right. You blood pressure is 96/39 so a little better. You are wide awake right now  and clapping your hands. It's it a pretty wonderful feeling to see you alert and happy. I'm only letting you nurse off the left side, you are pretty ticked about that. You are urinating better such is awesome because they won't have to give you lasix. You have a lot of itching on the backside of your diaper. We put cream on it, you had a wonderful time putting cream on everything:) I want to watch that tomorrow, it is pretty red tonight.

Hard days

Well my little man I'm lying next to you in a place I prayed I would never have to share with you again. The days are starting to muddle together. We have been here just under a week. The days have been filled with a thousand worries. Hopefully we are starting to see some progress. Right now you have three different drips going. They are working to shut down your intestines with hope this will seal off the leak. So many tangled Iv lines. You have a monitor on your tie and they take your blood pressure every hour. Our nights are interrupted every hour as they come and go checking your stats, temp. And checking ivs. At four am they draw blood, yesterday we put in a picc line so now you don't have to be pricked so often. It was one of the hardest things I have ever done watching your poor helpless little body hurt as much as it has. You would cry for your daddy and hold me as tight as you could. Several times they had to prick you two or even three times to get a vein. You were such a trusting little fellow when you came in and now you are leary of most of the nurses. Yesterday was a hard day, a scary day. You were so white but today you look and act better. There are so many unknowns but we are praying my little man. I love you, more than life itself I love you. You are so strong and still the light of my life. 

They are waiting to give lasix until your blood pressure goes up. It is only 90/35 right now. To low. I pray you have a good night. I love you little Garrett.