Happy New Year's Eve!

What is the exciting New Years Eve at the Fullmer's? The boys are enjoying their new wii. Our little Lucas had a hard time in 2008..... Let's hope he has a better year in 2009! He is our little "tough guy"! Happy New Year!

Jayden Kaleb Isaac Playing Wii Fit!

Lucas Our Little Tough Guy!

Christmas in review

Christmas this year was one we will always remember. Lucas was in the hospital like he has been most of his life. Our Social worker gave us a night at a hotel with in walking distance to the hospital. We all stayed there Christmas Eve (except of course Lucas). We were getting tried of the Rainbow Cafe, so the boys enjoyed their fav steak and ribs at Chiles.

Christmas Eve morning Santa brought some things for the boys to our tiny hotel room. Then we ventured to the hospital. I was in a bad mood and very depressed. When we walked in Lucas's room his TPN was turned off and no one knew why. The communication was not the greatest. And I was upset to be there. Luckily for family they made their way to come spend time with us. We reserved the conference room and it turned out pretty nice. We had a lot of family come it was great to have the family support.

Lucas has been having problems with his PICC line so the surgeon scheduled him for a broviac to be surgically placed in his chest Friday. But she didn't want to pull his PICC line out if she could avoid it because each central line is so vital to him. After it would be placed she said we could be discharged the same day to avoid any possible virus's in the hospital. Any way at the end of the party Lucas's nurse came to check on him. She notified us that if his PICC line would draw blood at 5:30 we could we discharged (on Christmas). Lucky for us it did! But once again he had a low fever when she took his vitals. The Doctors said it was border line but we should be okay to go. We had been waiting for a storm all day and at about 8:00 it hit. At 9:00 pm with 3 new inches of snow on the ground and a huge blizzard we were finally discharged. It took us a long time to get home but we made it!

We finished Christmas at home by opening presents from Santa at 11:00 at night. The boys had a blast and Isaac was very funny. We were up late and very tired but we were together. The kids were spoiled rotten by family and friends.

It is nice to be home but Lucas is very time consuming. He has 4 IV pumps and one feeding pump. As well as his ostomy care, G tube care, changing dressings, calculating G tube out put and replacing with IV fluid, NJ tube care, meds, IV antibiotics, TPN stuff, lipids, and tube feedings. But it is so worth it to see his precious smile. He loves being at home, and so do I!

Lucas 1st Christmas
Family Christmas Party At PCMC

Having Christmas At Home About 11:30pm

Our Miracle For Christmas!

Quick Lukie update

Luke has been doing well. His fever is gone, and the cultures have stayed negative. The surgery team just came around. They said cultures only grow something half the time..... and will continue to treat Lucas like he has an infection. So we will be here for Christmas. We will try to make the most of it. Our social worker got a hotel for our family next to the hospital tonight.....and we have reserved a conference room for a Christmas family party. They are trying to make it the best they can for us. But to tell you the truth it is real quiet and depressing. They try to get as many kids home as they can for Christmas. On our unit they have discharged 13 kids today, I feel like we are the only ones left! I feel bad leaving Lukie alone on his first Christmas Eve, but I need to be with my other boys. I wish I could get a clone of me for Christmas so I could be 2 places at once! Luke has been having problems with his PICC line but the surgeon does not want to pull it unless she has to because it is so vital to him. She said when they do pull it the next one will be a broviac surgically placed in the chest. Lukie has been very sweet and smiling, so he must be feeling well. If all continues to go well we can go home as soon as Friday. We will then have "another Christmas" at home with all the boys.

Lucas & Santa Together First Time!

Lucas was happy and calm as can be to see Santa at PCMC. We are trying to enjoy the journey as we will be at PCMC for Christmas. Lucas also most likely will have to get a new PICC line on Friday.

Living Life Minute By Minute

Friday afternoon we were told by the surgeon we could be discharged Monday (today). When we got to the hospital this morning no one knew of this plan. So we asked the surgery team to come talk to us. We told them the situation, and that Lucas is a very unique baby, not like the typical patient. We worked out a plan and thought all was well. Then they talked to Lucas's surgeon, who was not satisfied with his feedings. She said she like to keep him over night and discharge us in the morning. Well those who know Lucas's history know that is too long to wait. The nurse did his 4:00 vitals and discovered he had a fever. She said I will ignore that and check again in a hour. The nurse called the resident.....when she came in I could see the look on her face she had bad news. They have to treat the fever like an infection and take blood cultures. The bad thing is that he stopped taking his IV antibiotic just yesterday. If he has another infection well recently having IV antibiotics it could be really bad. We will have to wait at least 48 hours to get the final results from the cultures, which means we may be in the hospital for Christmas. We are praying the cultures are negative and he is just teething or something to cause the fever.

Lucas's PICC line has been "sluggish", and one night was clotted all night. So there is a chance we may be getting a new PICC or broviac before we go home too. The nurses he has today and tomarrow are his primary nurses that have worked with him from the beginning. They have been good to us. I have never seen them look so disappointed as they did today.... they are on our side and want us to be home for Christmas. But they also want what is best for Lucas.

I love Christmas, it is my favorite holiday. But this year is different. Even if we get home for Christmas, Christmas is just one day. We missed out on the whole season... baking....parties....seating by the tree and drinking hot chocolate. But the most impotant thing is being together no matter where that place may be. Someone always has it worse. There are several times I have seen families in the hospital whose loved ones won't be around for Christmas. I just want Lucas to have a break, he is stronger than I will ever be. He has been through more in his little life than I have been through in my life. Last night his nurse said I wish I could give Lucas a new bowel for Christmas...I wish I could give him mine.

Our kids favorite Christmas video from youtube. Watch it all the way through, and have a tissue handy.

Happy Holidays 2008

Here is the (uncut) video of the 2008 year in review.

This year has definitely been a year full of lessons of all kinds. Jayden turned 8 and got baptized, Lucas was born and completed our family so well, our 10th wedding anniversary, got a new van and a car payment, even went on a family vacation to Pittsburgh (will kind of)!

To be honest I think I'm okay with putting 2008 to bed, and lets bring on a fresh year 2009! I will drink to that (Eggnog of course).

Sorry this year I'm to (lazy) and won't be putting this video on DVD and sending it out to family and friends like in the past, hey maybe next year. We hope you enjoy watching here on our blog.

Have a great Holiday Season - Love The Fullmer's

Fullmer's 2008 Memories part 1

Fullmer's 2008 Memories part 2 of 3

Fullmer's 2008 Memories Part 3 of 3

Sweet Lucas Update

Yesterday Lucas incision was bleeding, that has stopped today. His heart rate has been low the last couple of days, an EKG was done late last night, as will as a chest x-ray and blood cultures. They are still trying to determine the cause of his low heart rate. He started vomiting green bile today. Little bowels sound at the moment, hopefully soon. Very little output from his ostomy and no bowel movement since surgery. Don't know when they plan to start feedings.

Hopefully with prayers and faith, Lucas can recover and his little body can have a break.

We are very thankful for the love for our family.

Pictures of the last week

Lucas at home December 3rd

Lucas Loves his little bed at home December 7th

Family all together at PCMC December 9th

Mom making Lukie SMILE! December 9th

Lukies Sweetheart! December 9th

Our Little Raindeer! December 9th

Older Boys & Video Games December 9th

A kind person donated a condo across the street from temple square for 4 days December 10th

Lukie in PICU December 12th

Utah Jazz Visited PCMC. Lukie saw Morris Almond and a Coach. We later saw several other players in the hall. December 12th


Lukie moved to IMSU December 13th

Quick update

Lucas is now out of ICU! They removed the ventilator and is off
oxygen. They are working on keeping him comfortable. We were visited
by the Utah Jazz yesterday and got pictures and autographs. We will
update better later. The only access I have to update with is Mike's
IPhone.

Lucas after surgery picture

Lucas out of surgery

Lucas went into surgery around 7:00 tonight. Most of the day we didn't know if surgery would happen because of the picc line infection he got in the night. But they decided he needed to have the surgery anyway, and things seemed to go well. She didn't know what she was going to do until she opened him up. The plan was to look for a blockage. If she couldn't find one she would give him back his jejunostomy (which we really didn't want). There was alot of scar tissue, she spent an hour and a half cleaning scar tissue. He is also at high risk of getting more scar tissue. There was also a twist in his intestines where the old ostomy was. She removed this portion (about an inch) and reconnected it. She was able to keep his same ostomy he has had from his last surgery. He is still on a ventilator and will be in ICU probably until tomorrow. The plan is to start feeding him in 4-5 days. Hopefully this will give his ostomy another chance and things will start to improve. Thanks for your thoughts, prayers and support. He is a little fighter and has a long road ahead.

Lucas Surgery Tonight - post updates as they come

Lucas at midnight had a fever of 102.3. They did blood work and none of the blood cultures has grown anything. Since his fever is gone and he's doing okay, the surgeon said let's go ahead with the surgery. The surgeon said if he does have a line infection that will be treated during surgery with antibiotics. They will try and get him in the OR as soon as possible.

We will try and update the blog on Lucas condition.

Update: 6:10 Lucas should go down to surgery at 6:30. he also has something growing in his PICC line, which they are treating with antibotics.

Surgery postponed

Quick update..... Lucas's surgery is postponed until tomarrow because the surgeon is still doing a liver transplant that is taking longer than expected. Surgery will probably be in the morning, we do not have a time yet. We took cute pics of all the kids we will post later. Thanks for your comments, thoughts and prayers.

Bring it on!!!

Today we had a follow up visit with Lucas's surgeon and GI doctor. As many of you know Lucas doesn't have "regular" doctor visits. We started out with a abdominal xray. Which showed things haven't changed since surgery like they had hoped. We were then sent for more GI testing. The surgeon and GI doctor reviewed the results together. We they came to talk to us I could tell by their faces it was not good news. Lucas needed to be admitted immediately. He has a blockage from scar tissue from his last surgery. He is scheduled for surgery Wednesday Dec 10. This will his third surgery in 3 months. It has been a looooong and stressful 7 months. He is such a precious little guy and has been put through @$;@. How much more can his little body take? I don't understand why he has to go through this. Doctors still don't know what to do to help him. Their just putting out fires along the way. We never know what to expect. I seriously don't think our family can take any more. Enough is enough. Positive feed back would be great to keep us going. Here's the broken record.....Please remember Lukie in all of your thoughts and prayers! Thanks!

Fullmer Christmas Tradition!!!

Since 2005 each year we put a video together before Christmas, with interviews of the boys and pictures. It's been fun looking back at what has changed from year to year.

2008 video is right around the corner!!!

2005 Year in review part 1

2005 Year in review part 2

2005 Year in review part 3

2005 Year in review part 4

2005 Year in review part 5 and start of 2006

2006 Year in review part 2

2006 Year in review part 3

2006 Year in review part 4 and start of 2007

2007 Year in review part 2

2007 Year in review part 3

2007 Year in review part 4

2007 Year in review part 5

2007 Year in review part 6

2007 Year in review part 7

Home At Last... Christmas Time Again!

The most thankful Thanksgiving ever. The started out by taking one minute at a time. Mike and I and the 3 older boys stayed the night in a hotel and having a fire alaram go off in the middle of the night. When we arrived at the hospital the nurses told us if Lucas didn't trow up too much and bllod sugar was okay we could go home in the afternoon. Lucas was a little fussy and pulse was racing. I asked the nurse if he had a fever and she took his tempature. It was 100.4, they will not discharge if it is 100.5. They gave him tylenol and rechecked a half hour later, it was 99. Then they checked his blood sugar. It was a little lower than they would have liked, but okay. So they said we could go home. As the nurse was out of the room getting discharge papers Lucas trow up bile again. We didn't say anything and Mike hurried and cleaned it up. What they don't know won't hurt! We had Thanksgiving dinner at our favorite place the Rainbow Cafe before leaving the hospital. When we got home Mike took the older boys to his parents for dinner and I had quiet time with Lukie, and waited for home health care. It was a wonderful Thanksgiving.

Saturday we decorated our Christmas tree, the boys had a blast. they decorated all by themselves. This year I really don't car what it looks like! Lucas is still not tolerating any feedings, so I have stopped feeding him. We are now trying continuous feedings with a feeding pump to see if small feedings will help instead of bolus feedings. Every time Lucas is discharged he brings more equipment home with him, along with more learning for me. But I am very thankful to be home!

You have to stand up for what you believe in.

I WON!!!! I was very discouraged after talking to the surgery team Monday. They wanted Lukie to stay until he was at full feedings which would take months, years, or forever. The nurse knew I was upset and asked our Social Worker to come talk to me when I arrived Tuesday morning. Lucas also had GI testing done to see why he is not tolerating feedings. The social worker talked to the on call GI doc (my fav Dr. O'Gorman). She wanted to know what was going on, why I was upset. I explained to them what my feelings are. Dr. O'Gorman knew we could take good care of Lukie at home. We done several things with him at home. She felt there was no reason for us to stay at the hospital or even go to UVRMC. She made some changes, and said if everything goes well, we will be home on Thanksgiving. He has been throwing up today, so they will be watching him for the next 24 hours. So we definitely will be taking it hour by hour.

Thank you all for your thoughts and prayers.

NO WAY OUT

From the mouth of Mike.

I know I sound like a broken record, but Ive lost it. We were told today by the surgical team that they have no clue on when Lucas can go home. It could be 3 or more months, who knows?

I enjoy seeing him each day and seeing him smile at me when I walk in. With work some days I only see him for 1 hour, it's very tough. Let me tell you there's not a day I don't cry as I leave him for the night, it's just so incredible hard to leave your baby. The older three boys are all struggling and each night as they say there prayers they wish we could all be home together. It's so hard to balance life. I just wish somebody had a answer for Lucas. I try to be positive but after 6 months this just eats me up. I just can't stop crying.

Video Tribute Reminder


From the mouth of Allison.

I try to come to the hospital each morning with a smile. But today I can't stop crying. Everything builds up and it is now hitting me. Sorry this is a negative post. But hey the last one was positive! Lucas is not tolerating any feeds. Today we did another x-ray which showed as always a lot of gas and barium from 2 weeks ago! Things are not moving at all. Leaving my baby in the hospital is the hardest thing to do. But I can't stay here for weeks when I have 3 other boys at home. The doctors give us contradicting information. The GI doc thinks we did a great job at home, and we can do what ever we want. The surgeon team wants Lucas to stay until he is at least 1/2 feedings. Who knows how long that could take! I has requested a care conference with social worker, GI team, Surgeon and primary nurses. I try to be positive and patient but I don't know how much more I can take. I seriously think I could give him the same care at home. It is hard to keep up with the other boys as well. I HATE leaving my sweet baby!!!! Any suggestions?

What our we thankful for?

Lucas is thankful for?

1. Family - love and take care of me
2. Hospitals - so I can get the care I need
3. TPN - for my nutrition
4. Binki - it's just so good
5. Fisher Price Soothing Glider - comforts me

Isaac is thankful for?

1. Video games - fun!

2. Football - fun, be one when I grow up
3. Hot dogs - they make me feel good
4. Squishy (blanket) - it spanks me
5. Lucas - he's a cute baby

Kaleb is thankful for?

1. Family - do fun things with me
2. Friends - fun to play with
3. Food - good for my body
4. Water - good when I need a drink
5. Jesus and Heavenly Father - they made the world for us

Jayden is thankful for?

1. Brothers - fun to play with
2. School - teach me, and I learn
3. Temples - get married
4. Lucas - he's fun to play with when I hold him
5. Family - being and doing things together

Allison is thankful for?

1. My 4 boys - that keep me busy everyday
2. Internet - helps me communicate with people I would not otherwise talk to, find helpful info
3. Chocolate - calms me, tastes soooooo good
4. Washing Machine - hey I went 5 years without one!
5. Mike - gave me 4 beautiful boys

Mike is thankful for?

1. Family - being together as families is all that matters, and that's were the happiness truly comes. Doing thing with families - Priceless

2.. Examples - all the great examples that have showed me what service is all about
3. TPN - without it my baby would not be here
4. Faith - it gives me a reason to believe
5. Soldiers - all the women and men who put there lives on the line for me and my family, so we can have a better life.

Test of our patience & faith

Another day of green bile. They took Lucas to have a x-ray to see if there was an obstruction. It showed what it always shows alot of trapped air. It also showed barium they used in testing ten days ago. This means things are not moving at all. Most people pass barium with in 24 hours but not for Lukie. They will repeat the x-ray in the morning. They have stopped feeding him for now and will start again once things start moving through.

We got a surprise visit from Infection Control today. She informed us an aid that took care of Lucas last week has whooping cough. The symptoms usually show up in 10 to 14 days. Because of Lucas's condition they will start yet another antibiotic to prevent whooping cough.

I tried to prepare my self for set backs, but it is harder than I thought. We try to be patient but it is very hard! I just wish the doctors could give us answers!

Our least favorite color Green!

Sunday night Lucas started throwing up green bile. This usually means there is a blockage. The surgeon was not real surprised because they are still trying to figure out Lucas's underlying problems. They started feeding him Pedilyte on Monday and he did okay. Yesterday they started formula. He didn't feel like eating a whole lot and started throwing up bile again. He has passed gas and had a couple of messy diapers!!! Yea, I didn't think I would ever get of excited about something which seems so natural. I never knew poop was such a good thing! He has not ate a lot today but has not thrown up. They are still trying to manage his pain. And has the saddest high pitch cry. He also got his staples removed today.

Mike and I were trained on taking care of his G tube. One of the many things to add to my list of things to do at home. Lukie is old enough now to know when mommy is around, and it is so hard to leave him! The plan is once he can start tolerating a few more feedings we can be released. Hopefully in time for Thanksgiving!

Sad but true, we our now Private.

If you hear from someone who looks at our blog and was missed, please comment and let us know, and we will be glad to add them. THANKS!!!

Staying Safe: Dangers in blogging

A video from KSL

Video Courtesy of KSL.com