Wild, Crazy, Big 30, Family Fun!!!

Happy Birthday Mikee! Yesterday Mike turned the big 30! We celebrated by Outback Steak House Take-out, since we are home bound with Lukie; and cake and ice cream with the Family. It was nice to be together in our own home.

Sunday was our Primary Program so we went to Sacrament with the family. The boys were dressed in matching suits (even Lucas). Jayden and Isaac did their parts great, and Isaac danced in place while he sang. Kaleb was upset and I ended up joining him on the stage half way through the program.

After church I had a meeting next door for about 15 minutes. During that time I got out crayons and markers for the kids to color. When I got back home Isaac was pretending to be asleep while he was completely covered in markers. Isaac often pretends to be asleep to avoid punishing. Because this is a family blog, and I don’t know what ages may be viewing, Isaac’s clothes hide a lot of his art work. Meanwhile Mike was enjoying a nap with his little buddy. Life is very busy and crazy being home.

Lucas’s ten minute check-up today turned into 3 hours (pretty typical Doc appointment with Lucas). I am starting to feel a little tired by getting up every 2 hours for feedings along with IV antibiotics, draining ostomy and refeedings during the night. But over all I love being home.

Update on Fullmer family at home!

Will it's been nice being home. But to be honest it's been a crazy day with all the medical stuff (we only changed his stoma pouch 3 times today) it is so worth it just to be home together as a family.

We had a Dr. visit with Dr. Later today and he said he's look better, and said "that's the softest I have ever felt his stomach before". We will have weekly visit with him until his surgery on November 11th.

We want to tell everybody how much we appreciate the love and support to us at this time. We as a family have been though some up and down the last 5 months and the journey is not over. We would appreciate the continue thoughts and prayers for Lucas and the rest of the family as his "joy in the journey" continues on. Thanks Fullmer's

The Fullmer's October 2008

Picture taking by Allison

Lucas 3rd & 4th months of life video...

LUCAS FULLMER FUNDRAISER

Love Avon? Want to get Christmas shopping done? I know we may not be fond of fundraising, but this has a great cause! Avon wants to help with funding Lucas's next Surgery and piling medical bills. I hate asking for help, but this was an idea set up by Avon Reps themselves. A percentage of everything you buy will go directly to Lucas himself. Here is a link to a blog with information about the fundraiser http://lucasfundraiser.blogspot.com/

Happy are we, Happy are we!!!

After 4 1/2 weeks in the hospital Lucas is home again!!!! Things went pretty smoothly with discharge this afternoon. We will continue IV antibiotics for 10 days at home for his E Coli infection. Along with the other care I have mentioned before. The home health care nurse will come in the morning to help me with his new feeding pump. Lucas was so happy to be home he couldn't stop smiling! The boys and mom and dad were very happy too! We will have weekly visits with our pediatrician and weekly phone calls with our GI docs. We will enjoy our time home for the next 3 weeks (hopefully not sooner), before Lucas's next surgery and testing Nov. 10. We will enjoy our time home while we can!!

Baby steps

Something grew from Lucas's picc line culture. They believe it is gran B- but they don't know what type of bug it is yet. He will continue IV antibiotics for 10 to 20 days. If all goes well, if Lucas doesn't try to pull any tricks; we may bring him home as early as Friday.

The older boys are having a harder time as time goes on. Yesterday when we picked them up from the babysitters they were upset we didn't have Lucas. Kaleb said "you lied to me mom!". What they really want is their mom and dad back. It is a tough time for all of us. Please remeber all of our boys in your thoughts and prayers!

Lucas Has A Fever Of 102.2

and is going through the protocal of lots of blood work. They said plan to stay at least 48 hours until the blood work comes back negative, and we know if he has an infection. Rough get go for Lucas, he was scheduled to be discharged today home. We really just don't know from minute to minute what will happen next. Prayer's are what he needs at this time. He needs a break. He is the most positive happy little guy I've have ever been around. His smile just melts hearts!

He is scheduled for a Endoscopy November 10th and his Surgery (takedown) will be the next day.

We love you Lucas

A Very Crazy Long Day!

Today started out as a disappointment. I was expecting to be transferred to UVRMC. When I arrived at Primary Children’s they told me we could not be transferred because of insurance reasons. I was bummed! After talking to the Surgery team, and our insurance we worked things out to be transferred. During the day we got several conflicting information if we would be transferred or not. They finally came to the conclusion we could drive Lucas to UVRMC and admit him ourselves. But when the nurses at Primary’s called UVRMC to see if they had a bed ready and when to expect us the nurses at UVRMC freaked out. They didn’t feel comfortable in Lucas’s care. So they wanted to send nurses to Primary’s next week to be trained. The GI team didn’t think this was a good reason to keep us far from home waiting a week for the nurses to be trained. There are so many infections and viruses in the hospital they do not want to keep him longer than necessary. Especially since RSV season has already started. So the GI doctor feels Mike and I can take care of Lucas at home. We will be trained fully for 4 days and bring him home Monday night. Today I did everything for the nurses, and will continue to until Monday. The doctors will keep a close watch on us while at home. Taking care of Lucas will include the following plus more: TPN-with pump, Lipids-with pump, refeeding stool pump, NG tube care, keeping track of ostomy output, and replace with regular IV fluid, changing ostomy bag, placing feeding tube into intestines and inflating balloon, and four different meds. The hospital will print off a list of when to call the doctor, which doctor to call, and when to go to the hospital. He is at high risk for dehydration. He still is not tolerating his feedings and throws up a lot. This will be a full time and a half job. Just because we are bringing him home doesn’t mean he is better. We may very likely end back up at the hospital; technically he still should be in the hospital. It will be very hard to mange normal home life with all of Lucas’s care.

The Surgery team came by today. They want to reverse his ostomy as soon as possible because of refeeding difficulties. We will schedule his surgery around November 17th. At this time they will most likely do an illiostomy and place a G tube to decompress his stomach. The recovery from this surgery will be about a month. Before surgery they will do motility testing to see if they can tell what is wrong. Just because Lucas had surgery doesn’t mean he is any better. He still has all of the complications he had before and more. His next surgery will be a whole new story, we will not know for sure how thing will go because the doctors aren’t sure at his point what is wrong. Things are very crazy but it will be nice to be home! and find joy in the journey.

Early bird!

I walked in Lucas room yesterday morning to find the nurse had brought in a bunch of toys in for him to play with. I said it looks like you have some new toys. She said he woke up at 4:00am happy as ever and ready to play for the day. So they found somethings to entertain him. He was so cute! The GI team also informed me yesterday that Lucas can be transferred to Utah Valley today. They have talked to UVRMC and agreed that because this is a long term stay, it will be

easier for our family to be closer to home. It's possible he will be at UVRMC until he has his next surgery in two months, which will be at PCMC. The team requested to have UVRMC's highest trained nurses to care for him. He will be assigned the same nurses daily so they will give him the best care possible and avoid rotating nurse that can cause confusion on how to care for him.
Lucas was so excited to hear this he laughed for the first time (see video clip). We will give information later for those who would like to come visit to keep us company!

Our weekend as a family!

I took the 3 older boys on a date Saturday night. We had a blast! We had dinner at Carl’s Jr., painted pumpkins, and ended the night with pumpkin chocolate chip cookies and hot chocolate with Halloween marshmallows. It was great for all of us to get away from hospital life. On the way home the boys told me how much fun they had, and how they thought I was the best mom. I haven’t felt like a very good mom lately, so it was good for me to spend time with them and let them know how much I love them.

Lucas is still having a hard time tolerating his feedings. They doctors think there may be a problem with his upper intestines. They are hoping this is not the case. This would require a very complicated surgery. We brought all of the boys to the hospital this weekend to visit Lucas. On our way back home Kaleb (5) was crying in the back seat. I asked what was wrong, he said he missed Lukie. I tried to explain things to him, and told him he is in a good place. The boys have been handling everything fairly well. But they all have little things they do that show they too are having a hard time. Like Jayden’s grades in school, and Isaac peeing and pooping his pants and self induced vomiting.

We have gotten generous response to people who are willing to help us. Angels show up in the strangest places. Thank you so much for all who have offered to help. I know you will all be blessed for your wonderful acts of service. Thanks to everyone who has helped in so many ways, I haven’t had time to send out cards like I would have liked to thank everyone. My favorite quote I heard today from Pres. Monson was “find joy in the Journey”. Because of our trial and modern day technology we have been able to communicate with people we have not seen or talked to in years, as well as meeting new friends we never would have known. Thank You Everyone!!!!!!

Help me keep my sanity!!!!!!!!!

Refeedings are going very slow. The doctors will not allow us to take Lucas home until they reverse his surgery in December. We have scheduled a Care Conference with the hospital team that has been caring for him. This includes nurses, GI docs, Surgeon and Social worker. They will all decide what is best for Lucas. The choices will be to stay here, see if Utah Valley is confidant in his care, or a live in home care nurse. Lucas's condition is WAY too difficult and critical for me to manage, let alone 3 other active boys. It is almost impossible for me to balance the kids in school in Orem and traveling daily to SLC. I know this will be a long term stay and I need a break! The longest we have had Lukie home is 2 weeks out of 4 1/2 months he has been alive. Some GI docs feel like they will find a good treatment for Lucas. Some of them don't think they will find a treatment for him. We will be very lucky to have Lucas home for Christmas.

As we were about to leave this evening Lucas vomited a ton. He is not getting enough through his feedings to produce that much throw up. They do not know what caused it but it is not a good sign. His ostomy bag was also empty which may mean he has an obstruction. They are watching him VERY CAREFULLY. I know everyone is busy with their own lives, and I appreciate the support we have received. A few people have offered to take a turn watching Lucas at the hospital. (even 1 or 2 hours at any time would help, especially with Mike needing to go back to work) It is out of the way for a lot of you, but if you are still willing to do it we would truly appreciate it. It is so hard to leave him alone, as well as leaving the older boys. I wish I could be in 2 places at once!!!

I (Daddy) being honest this is really taking a toll on our family, it's just so hard to balance life. Mentally, physically, emotionally, financially its very hard. We continue to have faith in the lords plan for Lucas. I start to think that maybe I should pray for what God wants from me, not what I want from him. Lucas smile is so special. So many people (nurses, doctors, friends, family) have stated to us after seeing him in person, that he has a special spirit about him. We agree.

My sister Melissa had a slumber party with Lukie last night before returning home to Pittsburgh this morning. It was an exciting night with a lot of partying and little slumbering. Thanks Melissa for your help!! We miss you!!!!!!