Discharge continue...

Right when I was writing this morning Garrett woke up and then threw up. I debated for an hour before I texted john. He was really fussy last night but hasn't had anymore symptoms today. They are doing a transfusion now and I think we may still get to go!
Saturday Maggie and I went to get dinner and john took Garrett to the garden. He sat him on s chair and when he went to pick him up somehow his drain tube caught and pulled out the stitch and an inch or do of tubing. By the time the doctor came to look at it the drain was all the way out. I do think Heavenly Father works in mysterious ways. We were freaking out, john claims he wasn't but he was. So far his body has handled the drainage really well. We do know there is still some discharge, he acts irritated quite often. He is still pretty pale and doesn't have much stamina but everyday is s little better than the one before. They have weaned him off of his tpn over the last few days and we are waiting for his last antibiotic treatment for the mrsa now.
The doctors are putting him on an antibiotic that they use on aids patients for his immune system. His levels are all about as rock bottom as they can get. He will take that until everything is more up to par. I think we will be working with an immunologist at primary childrens for the next while when we go home to Utah. They don't have a pediatric immunologist in the state of Oklahoma, just one more reason to move Johnny:)
Maggie is so excited we are going to be together as a family. I wish I could have recorded her when I told her we were all going to the motel together. If you could define glee that was her pure emotion! She asked if Garrett was all better and we could go home to our Oklahoma house.
Last night we went out to the garden. There was three little boys all under two, all had the familiar brown bag they use to hang the tpn under on the iv pump. They all had pic lines and all looked sick. It was almost surreal that just last week we were in the same spot, the same what ifs and wondering what ifs. My heart aches for them. How glad and thankful I am for modern medicine, for doctors that stretch the limits, yet how much you hurt for the little souls who are so sick. Hospitals are not a place where babies should spend their growing days.
Thank you to everyone for all the prayers. I told someone that even though I have told people I pray for them you never really realize how much it means until you are on the receiving end. I have felt your love and the sweet spirit of a Heavenly Father that I KNOW is mindful of me and my little family.

Discharge!!!!!!!

Well today is a day that we have wondered would really ever come!! The last week has been a roller coaster but the lows haven't been nearly as low and we have had many more highs. Garrett spiked a fever 9 days ago. He had had a really good night and was as happy as could be when he went to sleep. He'd ate a full thing of Cheerios and drank his fat free milk like a champ. At about 1:30 I could tell he was getting a fever. All of the night nurses have complained they can't get a temp on him in the night because he sleeps with his arm out away from his body and the thermometer won't register. I called the nurse and she said his temp was low enough she wasn't worried. As a mom when you lay by your child 20 out of 24 hours you know when something is amiss. He was too hot and too uncomfortable. I called her again a half an hour later and she retook his temp under the same arm. It was 101.5 so she brought in some Tylenol. He was livid by this time. Trying to get a toddler that is mad to take medicine in the little of the night is like trying to part the Red Sea. We got it down him but I could tell after about five min everything was coming back up. He threw up everywhere. They came in and changed the sheets. He has had a lot of anxiety when the nurses are in the room and by this point was a pretty sad little guy. The doctors ordered tests and labs and started him on antibiotics. About this time they started to worry about how anemic he was. We have been giving iron supplements for about a week now. The nurses are also having a hard time getting his pic line to draw blood. They had been taking it out of his tpn line. If they didn't flush well enough his numbers came back scewed and they would have to redraw with another waste and another draw. I'm sure they thought I was crazy, by now I'm pretty aware of certain things. I would tell them they needed to flush extra and they would just smile and do the regular flush. An hour sir so later they would come back in with scewed results. One day they pulled his blood three times. His little body couldn't keep up. Thursday night they woke me up at 3:30 or so to sign papers to give a blood transfusion. He was too anemic they felt to wait. We also did an ivig transfusion in Friday and will do another today. The fluid they pulled off of his belly came back positive for mrsa. This was my low day. I knew how mean it could be. John really felt like the antibiotics were working so we kept our chin up. By this point his drain had also went way down, like to 100 or less ml a day. His tummy was also looking good. It's pretty hard to get to excited because you start anticipating another set back and preparing for it emotionally. But they kept flushing his drain and it was flushing awesome, one day they pulled off about 260 but a few days later they couldn't pull anything.
Friday night john felt confident enough to stay with Garrett so I went to the motel with Maggie, to say she was happy was an understatement. She is like a little goat. She jumps and runs like a little goat. She has to run up every set of steps and see how fast she can come down every wheel chair access. She is our happy thoughts during all of this and truly out little sunshine. We take her baby buggy with us everywhere. If Garrett is lucky she lets him push it:)

Praying:)

Tomorrow is a big day and we are praying for a miracle to a Heavenly Father that can work out things bigger than what we can handle, bigger than what we can imagine. We are praying that somehow we will have a miracle. I have came to the realization that heavenly fathers miracles in this life are worked out by people with skills and talents, those who have refused to settle and have continued to push themselves to excel. Talent, knowledge, skill, the unknown and faith all work out a miracle.  One of our nurses came to say goodbye. Even here you know there are prayers being asked for our little family and for Garrett. What a comfort this has been. I don't know why it has never dawned on me before but last night I prayed for the other families here, the other little souls who don't know really what's going on or why. There are so many little ones that have sad little stories and their families are searching for the same answers and the same miracles. I pray they can find them. The hardest thing to add to my prayers is thy will be done. Yet with that I also have faith in a bigger plan than all of this. I know that Heavenly Father is aware of Garrett and if my family and one way or another it will work out.

Today was a happy, good day with lots of smiles from both Maggie and Garrett. It has been such a blessing to have Michelle here.  Going to miss her strength and presence more than I can stand. She has always been a rock for me to lean on and the older I get the more I realize how dependent I am on her and how grateful I am that Heavenly Father gave her to me for a sister.

Garret's drain has been causing a huge amount of pain. We are realizing it was his main source of discomfort. It plugged yesterday morning so they took it out last night. His little tummy is quite distended and I know it is uncomfortable but he is just glad to have it out.  He has been so much happier and active today. His center of gravity is scewed with the extra weight and he is terribly wobbly and weak but he was our happy soul today. They have a park here with big old trees, flowers, squirrels, robins, and sparrows. It is the happiest spot here and we spent a lot of time out there today, the sunshine, green grass, and blue skies is more of a comfort and healing power than anything I can describe. You need out of the four walls of a hospital.

Tomorrow they will replace the drain, do another lyphiocardiogram, and hopefully find area that they can do what is called schlera therapy to and shut off the source of the leak. This is plan b, Dr Lillis that is doing the procedure is very smart, confident and kind. I appreciate those talents more everyday. He is the first case in tomorrow morning. John took Maggie and Michelle to the hotel and is coming back here to sleep tonight.

Praying for tomorrow!!!

Jeannie

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.

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. 

Life in general

Oh how time seems to fly, I don't sit down to write on this near enough.  It seems like there are always ads to do or babies to tend to:)  My babies are growing so fast I know that making this a priority is more important than many of the things on my to do list.

Christmas was a haze with the sale and all that went on, it seems like it was hear and then it was gone.  My mom and dad came down for the sale, it was so good to see them and so hard to let them go back home.  Each day I come more and more to the realization of what a blessing each day is.  I hope that I cherish them a little more, it seems like all to often I let things that really don't matter take precedence over the things that really do.

Dad has had quite a bit of trouble with his heart.  They just put a pacemaker in about a month and a half ago.  He has started to give away many of his "earthly acquisitions" and in a way it breaks my heart to know he is thinking of the days when he won't be here.  For Christmas he gave us all a Navajo rug.  Each genuine rug has a flaw in it that the old women would leave to let any evil spirits out.  We used to spend hours on the floor in his office looking for the flaw, they were one of his most cherished possessions in this world.  Now as his children they will be one of ours.  It makes me cry quite easily knowing that someday I won't have him.  How lucky I have been to have the great legacy that I do.  I often contemplate that my children won't grow up with the desert, Asay Creek, or the barn meadows that I grew up roaming and loving.  I did have an enchanted childhood, with parents that I knew loved me.  Dad took us everywhere.  My memories are filled with long days in the saddle, bucket rides in the tractor and water sceeters in the barn ditch.  I would give about anything to let my children have those memories.

We have been down to Poteau quite a bit, I know it probably won't happen but someday I would love to buy it just so my children can have a piece of land to grow roots down into, a place to love where serenity can be found in the day to day chores of life.

Maggie is growing each day, she is her own little spirit that has more spunk and will power than most adults.  Her middle name should have been Gilbert, she reminds me so much of him.  She tells me her skin get's pinkley when she has been in the tub.  All she wanted for Christmas was a swing set and a yoyo, the yoyo came thanks to Peppa Pig which she LOVES.  She would very much enjoy if she could watch toons all day everyday which I do try to limit how much time she gets in front of the TV.  She LOVES her cats and talks to them like they are her little babies.  When she gets a bottle she refuses to drink it and unless it's "all the way to the top."  She would love to mother Garrett all day everyday and loves to play with her babies.  Lately she has started to play pretend on most everything.  Her "friends" consist of the shaving cream bottles (one night after John had got done shaving she wanted one of them in the tub, she informed me the leftover shaving cream was a booger) the baby wash and the soap dispensers.  Sometimes they go to bed with us, multiples of them, but for real:)  She loves honey bears which I have tried to eliminate in the last little while just so they don't leak everywhere.

Garrett is my kind soul who loves life and smiles at everything and everyone.  He is CRAZY lately in the fact he has no fear of heights and is on everything and falls off of everything.  I cannot keep him down from anything, of there is a way to climb it he does.  He is all boy, he growls at you, and is pretty easy to get a giggle.  I would love to get him weaned and yet it seems like his happy thoughts are nursing so we still nurse away.  He bites like the dickens and we have went the rounds a few times over it all.  He has suddenly grown a fettish for pulling Maggie's hair.  Last night he pulled it so hard he pulled her backwards in her chair she was sitting in.  It breaks his heart when you get mad at him and he has the saddest little cry in the world.  He has a little sweet tooth and would prefer you feed him candy, who wouldn't:)

John, my sweetheart, best friend, and love is as always crazy busy with trying to conquer the world.  He is never content to be idle and slow down and always takes on a bigger challenge somewhere, hence Poteau.  He really is my better half, we have had a heck of a ride, I don't know where I would be without him.  I love him with all my heart and soul.  We just had four years, there has been a lot of water under the bridge since then, a lot!!  He runs his head off for us and always has a smile, I marvel at his patience and his ability to stay calm in the eye of the storm.

My little Birdy is going to have a baby, I know how crazy is that!!!  I am so excited, how did she grow up so fast, where did childhood take us all and how is life so fleeting?  She has been terribly sick.  Tawnya and Rodney are coming home, it will be good for them to be back with dad, I will be glad to have them there just for the peace of mind.  Emily I pray with all my heart finds the happiness she deserves.  Jess is doing awesome on her mission, I need to write her.  I miss my Hells like crazy, I would give anything to have all my sisters live right next door.  Julie amazes me to stay on top of things, she is selling vitamins and gives a sales pitch to all of us lol:)  Steven got a new mini van and glasses.  Lou just turned the big 30, how wild.  Each and everyday I marvel at my parents and how they did it all.  I am so blessed.  I love this crazy day to day thing called life.