Tuesday, November 28, 2006

We Get To Go Home

Yeh! Yeh! Homeward bound tomorrow!!!!!! All went well at Dr's appointment today. We got some more information on transplant details. I am growing and eating good. I got the tape off my stiches today and so I get a bath tonight. We'll leave Seattle tomorrow afternoon on the train arriving home Thursday morning. Our month long journey comes to an end. The rest of the adventure ahead. We are looking forward to reuniting with our pooches and sleeping in our own bed. Hopefully the spiders and mice havn't taken up residence in our absence. See you all soon. Thank you for your love and prayers. Please continue for our journey ahead.

Reid

Friday, November 24, 2006

Mommy Gets To Share

Hello All!!!!! Reid ate better and slept better last night after we prayed over him. He woke up a little fussy, cried through a cold spit bath, took his medicine and fell asleep eating. I was able to leave him in on the bed for maybe a half hour. So for me to be able to be out of sight and smelling distance today is a big sign that he is feeling a lot more comfortable today. Ya! ya! Praise the Lord. Even now he has fallen asleep in my arms and I put him in his car seat and he has stayed asleep for now so that I can say hey to all and that I love and miss everyone overwhelmingly, a lot. It has been 24 days since we've been home. Two hospitals two surgeries Piles of stress and loads of info. The first surgery in Missouila was very hard. Just going for very simple hernia surgery to Kasai and liver biopsy, to no Kasai being done to being sent to Seattle. To another team of specialists to attempt a Kasai to them not being able to do the Kasai either, to having now to needing a liver transplant. Which is not easiest info to swallow. There is so much pre, middle, and post stuff to learn and to do so that the liver transplant has a greater chance of success. We have keep Reid away from sickness as much as possible, eating and growing as much as possible and be ready at a moments notice to fly to Seattle when a liver is found. Surgery could take 6 hrs to get started and then between 6 to 8 hours in surgery. A few days in ICU, 2 to 3 week in the gasterolgic pediatrics, then we will be able to leave the hospital, and go to the Ronald McDonald House and visit the Dr's twice a week for a few weeks then once a week for a couple of weeks. Then we could probably go home and have the fly or drive back once a month for a few months. then our visits will be reduce to once a year. Those of you how know me well know that I hate to travel. Well, that will have to change drastically. For we will be doing a lot of traveling. Yikes!! O'well any thing for my miracle boy, who is so brave and strong. He is a SUPER TROOPER!!!!!! The love for a child is so unexplainable, I wish that I could take this all from him and make him all better but I know that I can not, and I also know that Gods loving arms are embracing him and His mercy and grace is all about him. Jesus has and is and will continue to take his pain. BY HIS STRIPES HE ARE HEALED, BY HIS BLOOD HE IS WASHED. HE IS HIS STRENGTH, HIS SHIELD, HIS PEACE, HIS DELIVERER. I sing to him Jesus loves him, Jesus loves the little children of the world, Hosanna, and standing on the promises of God, just in short versions and he is so relaxed and resting in the fathers arms. Thank you Father for your love, provision, protection, wisdom, discernment & continue to do all of these. In His Holy Name Amen. Thank you Jesus!!!! We are know waiting our Dr's visit Tue. 29th. Then with all being well, we will be on the train wed. 30th and be back home Thur. the 1st. Exactly one month later from when we started on this journey. Then we await and prepare for a bran new, perfect little liver, hand picked, molded, and made just for my special baby boy, from his heavenly father. We had a great Thanksgiving with the Hatch Pack. It feels so good not to be in a hospital. But I am very home sick right know. Having Nana and Aunt Rikki and Daddy with me the whole time was great, the female support is great. Having Shawnee here now is a great comfort too. But Nana and Aunt Rikki can not be replaced. I Miss them, But am doing OK!!!! Smiles, loves, hugs, and kisses to all, will be home soon. To All BE Well And Healthy So That You Can Visit When We Return. Love All Mommy!!!

Thursday, November 23, 2006

Thanksgiving Day

Hello all,

Boy did we all get stressed out leaving the hospital, our awesome nurse said we had been there to long & hospital life was not our thing. Reid kinda picked up on all the stress & was fussy.

But, we are in a warm, real wonderful home at Aunt Shawnee's', and life is good. More smiles & grins last night & this morning then all week! He is also feeding way better. Mommy will not need to pump at this rate (TMI). So after all the hospital stress & the surgery all recovered from, this is going to be a vacation till our last check-up Tuesday, then a relaxing train trip home. Then the wait for the big day. We will keep everyone updated on those details when we get home & iron them out.

We are going to miss everyone this Thanksgiving Holiday, But Mike & Shawnee are making us way to comfortable & fun. She makes awesome coffee's in the morning too!

Yes, I will desperately miss the duck hunting and shooting Dads birds for him so he will not loose his confidence (ha ha). I will also have missed the UFC stuff w/ Rob.

Well don't worry about us , I'll be checking out the sag in Mikes chair, Tami & Reid will be spoiled by Shawnee & Tami is confident that Reid will find his giggle before we come home.

Love,
Dave & Tami & Reid
& thank you everyone!

P.S. Mommy & Reid are missing Grumpa & Nanna Lots! Love You!

Wednesday, November 22, 2006

We Are Leaving The Hospital



We have GREAT news! We are leaving the hospital!!

We are checking out of the hospital today! ( After they remove the IV, which is also GREAT news!).

We will have THANKSGIVING dinner with my cousin Shawntel, at her house. Then we will stay with her for a week or so, possibly returning to Montana next Wednesday.

Please pray regarding the transplant. We will have only MINUTES notice to be at the airport and fly back to Seattle. So we have to have a bag packed and cash on hand at all times. It is not that easy to fly out of Kalispell, so PRAY that all works out. If we can't get to Seattle IMMEDIATELY, they'll cancel that particular opportunity. We can't afford to miss opportunities.

Thank YOU for all of your prayers!! Happy THANKSGIVING!

Reid



Tuesday, November 21, 2006

Good Morning! Happy Tuesday!

Good Morning!

Today is Tuesday. We have been here at Children's Hospital for a week now. Wow. So much has happened in one week. I bet my week has been more exciting and more busy than that of anyone else I know in the Flathead Valley. This big city hospital life is pretty crazy.

I thought you might like to know that I have gained 4 ounces since I got here! I am now 11 pounds and 9 ounces. When I was born I weighed 5 pounds and 7 ounces, which is roughly the same weight as a Barnett Wildcat C5 crossbow. It weighs 5.9 lbs, features a lightweight composite stock, a thumbhole grip, vented quad limbs, and the "Veloci-Speed" high energy wheel assembly.

Hummm. I wonder if the doctors think I am made out a composite stock, with a thumbhole grip and vented quad limbs ... the way they had me all wired up the last few days. However, I am happy to say that all tubes and wires have been removed, except the oxygen sensor and the IV in my groin. (I can say that word because I am a boy!) They removed the catheter and feeding tube. I am so excited.

Hummm. Maybe I am like a "Veloci-Speed" high energy wheel assembly. Emphasis on high energy! (My mystery writer who types this for me is saying, ... "A high speed what????". She obviously is not versed in the proper archery lingo. I wonder if she even knows what a real "RedHead" is. Just kidding. ) I really am feeling better.

My tummy is alot better. It is not all bloated and extended anymore. I slept through most of the night last night. Although Mommy and Auntie Rikki were rudely awakened by a loud fire alarm at about 3:00 AM. Apparently the hospital is still under construction in some of the other wings. I also slept through the ultrasound. I wasn't too impressed with the little EKG stickers and all the little alligator clips.

Yesterday I had an echo-cardiogram of my heart. The doctors still have to tell Mommy and Daddy how that went. I guess I have several more tests to take before we can go home. There is an evalution process which includes diagnostic tests, lab tests and consults with various providers. Tests include a pelvic X-ray to look at my hips, knees and bones. There is also a doppler abdominal ultrasound and a CT of the abdomen. I have to have blood work done as well as .... get this ... dental exams! I am told that all of the results help the doctors plan for connecting the new liver during the transplant. Hummm. I am wondering how my teeth ... or lack of teeth ... will effect the surgery.

Mommy and Daddy also have stuff to do. I bet they didn't realize that they would have to go back to school so soon. hee hee. They have to go through transplant education, nutritional education and meet with social workers. There is a lot we still have to do before we can come home.

Please pray for Mommy and Daddy and me. We miss our doggies, our family and our friends. There is a significant lack of camo, ducks, dogs and that good 'ole Montana country living. I know you are all getting ready for Thanksgiving. I am told that this is a time of great feasting and family. I am not sure if I'm able to taste a little of that gourmet Gerber Turkey and Gravy baby food yet. You'll have to try it for me and let me know what you think. Hey, I have an idea. Eat a jar of Turkey baby food for me, then clean out the jar and put a little something special in the jar for my mommy and daddy. You can give it to them when we get home. Wouldn't that be funny. Then they'll know you were thinking of them over the holidays.

Say a prayer for us, and know we are VERY thankful for you and your prayers and kind notes. Mommy and Daddy are keeping them all in a special place. Each kind word means so much.

Reid

Monday, November 20, 2006

Donor Report

Today Mommy and Daddy got information for possible donors for my liver transplant.

DONOR MUST:

(1) BE older than 19 years old and younger than 45 years old.
(2) NOT BE over 120 pounds.
(3) BE prepared for a 3 month recovery period.
(4) BE blood type of O positive.

(NOTE: Women recover faster than men)

I am already on the national transplant list. The doctors say that they want my name on the list for at least a month so that possible donors have until the first of the new year to think about it and make a decision.

So, if you are interested in being my liver transplant donor, find out if you are the same blood type as me, O positive. (O+) . Then you'll need to pass the other requirements.

By the way, I am feeling GREAT today. I am feeling much better. I have thrown the bottle out the window. It is just me and my Mommy. I'm happy and playful, and didn't even notice the ultrasound they did of my heart. Plus I filled my diapers a couple times. P U.

Reid

Sunday, November 19, 2006

Hi Everybody & Thanks For Your Prayers

Hi Everybody.

Thank you for your prayers and notes. They are so encouraging to Mommy and Daddy. Each time you write, copies are printed out and taken up to my room so Mommy can read them.

I am feeling a lot better today. I have had three bottles of milk. yummm. I've been awake since 5:30 PM (Pacific Time). The doctors reduced my pain medicine from a "4" to a "3". I also had a good bowel movement after my 4:30 PM feeding. :-)

Thank you again for your prayers and notes. We love and appreciate you all very much.

Reid

1 more day before the fun starts

Hello everyone,

Reid is doing super today! They took the tube out of his nose & had a small bottle of pedia-lite & then some breast milk. We are waiting for his little body to wake up from surgery & start pooping. He was grinning w/ all the attention today. It's so awesome seeing him looking normal & not all out-of-it w/ medication.

So Monday is going to be a zoo of people helping to get Reid ready for the steps to successful transplant. We will have a posting for the account information at Glacier Bank for those who have volunteered funds already. Praise the Lord for the wonderful family company that has supported us so far at Top Notch!

Just had to let everyone know Smiles & grins are on the rebound. And mom can hold him again. Wish we had more recent pictures to show you all, we are working at that. Thank you all for all the prayers.

Dad & Mom

Saturday, November 18, 2006

Twinkle Twinkle Little Star

Hello Everyone,

Reid is recovering from his second surgery, a little more groggy this time, the pain medicine is being administered w/ a I.V. instead of a local as before. But the surgery this time was more extensive. Next Monday we will be as a family getting spun up on the road map to a liver transplant. Working w/ nutritionist/dietitians, Doctor, financial & such. Reid has been gaining still about an ounce a day, so as long as we can keep this up, we can get him closer to being older & bigger. Which is good cause it widens his options in the transplant arena. They have kinda given us a clue it will happen at 6-9 months. Depending on his recovery & steady gain till then. We, of course as parents, will try to adsorb all the info they will be saturating us w/ next week. So as we know we will let everyone else know.

On the lighter side

Can God use a stuffed toy? Can a simple make such a difference in a child's life?

Let me introduce you to "Twinks" as in "Twinkle Twinkle Little Star". This is the one of many nursery rhymes that this blue super soft plush horsey plays. Kimmy Sue Radabah bought this for Reid as a Baby shower gift. Twinks is an unsung hero as of late.

When we were at home only struggling w/ the hernia Reid had, Twinks never failed to comfort Reid, who would smile & coo as the soft pony kissed him & played his songs. Even more a companion as He was recovering from his 1st operation in Missoula when we found out there was liver problems. Grandma & everyone could see the great effect this little pony had on Reid. Grandma bought a Care Bear that recited "Hey Diddle Diddle" in a perfect tone for him. He hears this and grins & then laughs after its done. Wow! Reid giggles in his sleep, but still hasn't got the giggle down while awake.

All this almost makes you a believer in Toy Story or Winnie the Pooh adventures. What adventures has Reid's little imagination taken him & Twinks & care bear on? Thank the Lord for the amazing help we have to make every moment we have w/ him wonderful & full of joy.

Love you all, thanks for your prayers & support.

Dad

Friday, November 17, 2006

Surgery Unsuccessful - Need Transplant

It is now 2:51 PM (Pacific Time) and my surgery was unsuccessful. The doctors were not able to perform the "Kasai" procedure as planned because my liver is too damaged. I will need a transplant immediately. I am on a national waiting list for the transplant. Mommy and Daddy will know more information about donors and the procedure and timelines soon. Pray for God's perfect will, provision, protection, healing, wisdom, discernment, favor, peace and comfort. - Reid

Surgery Update - Friday November 17 2006

I went into surgery at approximately 11:30 AM (Pacific Time) this morning. Doctors said that the surgery may take as long as 6 hours. Pray for Mommy and Daddy as they endure the next several hours. There is a possibility that we will be moved to a new hospital room by the time the surgery is finished. So, for those of you who call into the hospital switchboard or who stop by for a visit, be aware of the possible change. - Reid

Thursday, November 16, 2006

Hi Everybody.

We arrived safely to Children's Hospital in Seattle on Tuesday night. It was late when Mommy and I got checked in. Yesterday, the doctor came to talk to us about my liver and treatment.

He says that when I was still in Mommy's tummy, the bile ducts in my liver were blocked. This caused the bile to build up in my liver, making damage and scar tissue. It is a condition called "Biliary Atresia". The doctor said that it is common in children and that it is not a genetic problem. Whew.

The doctors gave my daddy some information, which says:

"Cells within the liver secrete a liquid called bile, which is made up of cholesterol, bile salts and waste product, including bilirubin. A network of tubular structures and tiny ducts form the biliary system to drain bile from the liver to the small intestine wher it aids in the digestive process. Biliary Atresia is the closure or disappearance of the biliary system.

Biliary atresia is a progressive inflammatory process that begins very soon after birth. In the most common form the delicate ducts outside the liver are affected first. White blood cells invade the ducts, which become damaged and may whither or completely disappear. Bile is trapped inside the liver and rapidly causes damage and scarring to the liver cells."

Today I have an ultrasound and tomorrow I have surgery. The procedure is called a "Kasai". During the surgery they will clear out my liver and bile ducts as much as possible. They will also make a connection between my liver and small intestine, by-passing the bile ducts.

After surgery tomorrow, we will have to stay here at Children's Hospital in Seattle for another two weeks.

The doctors told Mommy and Daddy that when I am 6-9 months old, they might recommend a liver transplant. That means that I would have to come back here to Children's Hospital for that surgery, too.

You can write notes to me and Mommy and Daddy. The hospital has a computer that Mommy and Daddy can use to post to my Baby Blog. They can also read the messages you post here.

Thank you for your prayers. I love you.

Reid