We have had a few up and down days, both emotionally and physically. Sometimes I find myself avoiding to just sit down and go through the emotions:) when we get sleep we are all happier, last night was a good night so hopefully a good day will follow.

Saturday and Sunday Garrett wouldn't let us pick him up. He would say bed every time you moved him and had a low grade fever, we couldn't seem to stay on top of the pain. Monday was a complete opposite, he wanted to go on his "walk" and then played awesome. Monday was my low day. With everything we have read most of the lymphatic leaks we have found are a sit it out and wait. They had finally put him on a bland low fat diet which does wonders for his spirit. His drain atomatically started to go cloudy. About 3/4 of the day they put him back to clear liquids. As a parent you just want to kiss it all better and solve the world. Dr Fishman told us there are to 100%  answers to this. There just isn't enough cases to know what works. We have been in Boston for two weeks now and many days it feels like we are regressing. His output is higher than it was pre surgery which gets discouraging.

The night before last he had no output. We have loved our nurses, and our night nurse was ecstatic. About 7:30 I changed Garret's diaper. It was saturated as where our bed linens. His drain was plugged. He was in a lot of pain most of yesterday. About 4:30 they came and flushed it. He had only had about 70 ml output all day compared to 1300 the day before. After the flush the pulled about 600 ml off in a two hour time period. They had also pulled all his Iv pain meds the night before last. They say the oral works a lot better and last longer, trying to talk your two year old into that theory at 1:00 in the morning is a little stressful:) he spits it back in your face and is determined not to take it. When he woke up for the morning we couldn't keep up with the pain. After he took the medicine we'd fill up the srynge and let him squirt it at john. He was pretty good when he was awake.

They did another ultrasound ( we had one on Monday also) there was to much fluid yesterday to tell much. He has a small cyst they are hoping to inject with a scarring agent to see if that will slow down the flow.

His drain is plugged this morning again and is leaking from the the placement site, they talked like they may have to replace it. His drain has bothered him more than the incision. I hope they can leave it alone. Today we get to be off of the tpn for 8 hours. They will still give him the same amount just in different intervals. They prick him a few times to check his sugar. He hates that. He is getting so he wants to be covered up with a blanket especially when the nurse is in the room.

We are still praying for a miracle. We have felt so much love through all of this and still feel so blessed for the sweet little spirits that Heavenly Father sent us. Excuse all the typos I write this on my phone and auto correct is only so good:)

Maggie is coming!

I have put off writing mainly because of the roller coaster up and down emotional days. We had surgery on Tuesday, everything went well. We woke up at 5:00 am to eat ice team so they could see the leak better. Garrett has loved going on walks here. He talks about it I his sleep. He woke up about 4:30 and I said walk and he was all about it. After cruising the halls a little we went and sat I bed, ate ice cream and watched toons. About 6:30 they came and got us, letting someone take your baby while they cry and beg for you will forever be one of the hardest things I think I will ever have to do. For seven hours we waited.  They infused his stomach with straight whipping cream once he was sedated.  They had to find cut about an inch longer incision. They did find the leaks, two places that were right where his last surgery took place. There is also a pocket of fluid accumulation. For the first few hours and into the night there was no leakage and we were ecstatic, about three thirty in the morning it started gushing out faster than it had before. We were sick. We are still praying for a miracle that it will stop.

Today is Thursday, we have had some hard nights with little sleep. They put in an epidural and catheter. The narcotic in the epidural made him itch like crazy. We are pretty sure he pulled his epidural drip out of place. It would drop and leak on you like crazy. His heart rate would stay at about 150-170 and elevate to 200. Before it had stayed closer to 100-120 and lower when he would sleep. Every time he would fall asleep he would jump and startle himself. We were not staying up on the pain. Last night they replaced the narcotic with Iv ??? But could not stay up with the pain. He was miserable. They face him Iv ib proven and a muscle relaxer. That worked wonders and for the first time since Tuesday he is comfortable with his heart rate down to 113 right now. He is sleeping sound for the first time in a few days. I think he is exhausted. They also gave him a suppository and he was able to go to the bathroom. I never thought I'd be so excited over my baby pooping.

I have loved our nurses. I have also hated with the exception on one our nurse assistents. They wake him up EVERY time the come to do his vitals. It makes me livid, especially when he is so worn out. I'm currently wearing his oxygen meter since he kicked it off and to avoid someone coming in.

Maggie is coming today!!! I can't tell you how excited I am to see her and hold her. My heart has hurt for her:) Michelle is flying out with her right now! I love my sweet family and all that they do!!

Garrett's output is tapering off but he has been on a fast since surgery so with nothing in his gut it should. His catheter gets to come out once he wakes up and they removed his epidural. He is very week, very pale, and very sore. Keep praying:)

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.