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

Busy Last Few Days, Ends With A Smile!

After totalling our van we searched for the right van for our family. After searching the Internet we ended up buying a 2007 Honda Odyssey. After three hours of negotiating we got a great deal. Kaleb commented "Mom we can't buy a van, there too expensive, they cost like $200 dollars." That's my bargain shopper!

Great Grandma Tucker and Aunt Irene came to visit Friday night. The kids wanted to make the gingerbread house they brought the second they saw it. I don't know who had more fun Grandma and Irene or the boys! They all had a blast. Do you really think the house will last until Christmas? We are so happy Grandma and Irene came to visit!

Today Lukie is more alert and is dealing well with pain. He still gets morphine every 3 hours. Today he even passed stool! A great mile stone since last surgery took 6 weeks to pass anything. Lukie even showed us his wonderful smile again! "Joy in the Journey!" The plan is to slowly give him pedialyte starting on Monday. That is when the new test will begin!

Happy 6 Month Birthday Lukie!!!!!!!!

Six months ago today our little angel joined our family. Little did we know the journey he would be headed for. He is such a wonderful addition to our family. Six months is a mile stone, sometimes we didn't know if this day would come. Lukie is doing well. His fever is gone and his heart rate is normal. They are still controlling his pain, but is alert at times without crying. They removed his ng tube that was sucking fluids from his stomach. With in a day or two they may slowly start feeding him. We are so lucky to have a wonderful family!

Lucas November 13th 2008

Lucas May 13th 2008

Lucas Transferred To...

Lucas was transferred out of ICU and on to infant surgical unit today. He seems to be doing well but is in a lot of pain (of course). He has had a fever and high heart rate which they are watching closely. They think this was caused by surgery. Lucas looks good, the swelling has gone down. He's been active, kicking his legs and moving his arms after the move with no crying for about 30 minutes, that's the joy in the journey!. Hopefully thing will continue to improve!

Update on Isaac he is okay from car accident, just a few bumps and bruises. Jayden and Kaleb were so glad we are all okay, they both were on the school bus when it drove by the accident, they were both worried at school that day.

The Big day is here for the Fullmer's

Little Lukie went in for surgery just before 8:00 this morning. We didn't have a time table on how long it would be. Lucas came out of surgery at 1:00 in the afternoon. We got a few updates along the way letting us know he was okay. There was a lot to do in the OR.

The surgeon started out by removing adhesions from his infection that caused the surgery 2 months ago. Second she closed his jejunostomy. Third she placed a Gastrostomy (G tube), which is a tube placed in the stomach that ventilates the air, since he does not pass gas on his own. Forth she did a Bishop-koop ileostomy. This is an daring way to perform an ostomy, but she feels optimistic about it. The way the ostomy is set up so the small intestines are still connected to the large intestines. So food will still travel through the large intestine to keep it healthy. This will also tell us if his large intestines function well or not. He may have bowel movements through his ostomy or rectum, where ever the least resistance is. We will also have to perform enemas to prevent bowel infections.

In surgery his bowels seemed to look okay. I asked if the bowels had good motility, she said they seemed to squeeze hard, almost too hard. She doesn't know for sure, but if so that could be causing the psuedo obstruction. We don't know if surgery has solved any of Lucas's problems. Surgeon said time will tell. But she seems to be optimistic. We do not know how long he will has the ileostomy, maybe a year or two, maybe forever. But if it helps him I'll do what ever I can!

Lucas is in ICU and may be transferred out as soon as tomorrow. The expected stay will probably be a couple of weeks, which is shorter than I expected! I don't want to give up my hope so I am planning on 3 weeks just to be safe.

I know Lucas has done well because of the prayers that have been said on his behalf. There are so many people caring for us. There has been anonymous acts of kindness for our family. They have blessed us when we have needed it most. There are so many great examples around our family.

The Fullmer's horrible terrible no good very bad day

The day started out like any other. Get the kids off to school and then head up to Primary Children's to get Lucas ready for surgery. Isaac is terrified of dogs. He has had a tough time encountering dogs on his way to school, so he asked us to take him instead of riding the bus. Our plan was to drop off Isaac and get on to freeway to head to Salt Lake. Mike, Lucas, Isaac and I hoped in the van ready to go. About a mile from our house we went through a green light heading to Isaac's school. Across the street I saw a white van not slowing for the red light on their side. As I turned to look at Mike the van hit us, spinning us around and hitting another car in the left turning lane.

Luckily no one was hurt physically. The impact was so hard Lucas was hanging upside down from his car seat, our suitcase packed for the hospital flew out the window and through 3 lanes of traffic. REMEMBER ALWAYS BUCKLE UP YOUR KIDS. I was so upset I couldn't ever tell the dispatcher what my birthday was. I seem to have a little memory loss. The van was totaled. Lucas, Isaac and I spent time in the Ambulance getting vitals checked out waiting for a ride to Primary Children's. Mike parents came to pick us up and drop Isaac off to school. His teacher called me and said he had had an accident and having a hard time. My mom later picked him up and took him to his Pediatrician to get checked out. I have not heard how he is doing yet. Poor Isaac little has already struggled with our family situation anyway. I can't imagine what he is going through now.

We had been dreading this day for a month how could we have made it any worse? I guess we were asking for it, this were going too smooth for too long I guess. When it rains it pours. The trauma team at Primary Children's did a head to toe assessment of Lucas to make sure he will be safe for surgery tomorrow. Everything looks great. We arrived at Primary's expecting an endoscope. No one knew of this plan and Lucas ended up getting yet another barium enema GI test. The Doctor performing the test said there is differently something unusually wrong with his ileum, but it is too hard to pin point exactly where, which may make it hard for the surgeon. The plan for tomorrow is to take down his ostomy he now has, and do another ostomy in his ileum making an iliostomy. They are cleaning out his bowels by giving him mineral oil every two hour and enemas every for hours. He can only drink Pedialyte through the night and stop feedings completely at midnight. This will be a long night!!!!!

The nurses recommend Mike and I to go to the ER at Primary Children's to get evaluated. We are both a little stiff and sore which they said will be worse in the morning. They gave us pain pills and said to bug the nurses for hot and cold packs. They don't get many 30 year olds in the ER at a children's Hospital!

I am so thankful no one was hurt, someone was watching over us! But seriously I don't know how much more a can take. I thought I was already at my limit. I feel like I could break down at any minute (Mike stated he just wants to cry and cry). Where are we finding joy in this journey?

P.S. Looking for a newer model Honda or Toyota Van, if you know of a good deal let us know.

Update: Lucas Surgery tomorrow morning @ 7:30am.

A delay in

changing the blog to private. We know so many people have followed our blog to stay updated on Lucas. With his surgery this week, we feel like this has been the best way to keep everybody updated, so we our delaying the change to private until Sunday 16th. We want to make sure all those family and friends get a chance to comment or email, (fullmer.mike@gmail.com) an email to us so we can add you when we turn private. Thanks

We our having a fast for Lucas on Tuesday (day of Surgery), all who would like to are so welcomed.

We tried to take some pictures of the boy!

Artist - Goofy!

Football Player - Sneeze

Sweet Lukie!

Cute basket - Moms Love

Going Private To Be More Safe

We have decided to make this a private blog. Please leave your e-mail address as your comment and we'll add you on.

If you have a problem posting, email us @ fullmer.mike@gmail.com and we will get you set up.

All we need is an e-mail address for you to be good to go!

We will turn Private on Sunday 9th, so let people know.

THANKS!!!

Please comment and Halloween Fun!

Halloween was fun. Mike and I took turns going to the Halloween Parade at school to watch the kids. Jayden was a Ninja, Kaleb was Shrek, Isaac was Bob the Builder (Which was much too small, but you know Isaac!), and Lucas was a Pumpkin. I took the boys trick-or –treating and to a party at our neighbors’ house, while Mike stayed home with Lucas. The day was perfect!

HELP!!! Any advice for an independent 4 year old? Isaac has been struggling the last few months and seriously we do not know what to do. Today all I wanted was to get one nice family photo before Lucas goes to the hospital next week. Isaac refused to co-operate and laid on the floor, and said he was too tired. Every night Isaac keeps his older brothers up and is very rambunctious. Tonight Jayden came in crying because Isaac stood on his bed and peed all over him. Mike put him in time out and he threw up all over. Isaac doesn’t want to do anything we ask him to do; he always has his own ideas that conflict with our plans. All he wants to do is play video games, which I didn’t allow my kids to do until I had Lucas and they were passed around to babysitters. If he is not playing video games he throws a fit because he wants to go play Laser Tag, go to Disney Land, Chuck E Cheese; or anything else inconvenient for us. He is so spunky I don’t know what to do!