Spring Break!

This week the kids were out of school ALL week. We didn't do anything exciting, but were happy to be home together as a family. We made Easter cookies (a week late!), had a huge snow storm, and the 3 older boys slept over night at Grandma Emily's!

Can you tell what cookie is Isaac's!

Jayden shoveled the drive way. 15 inches of snow in one day, high 43 degrees!

Lukie loves to play with my food at dinner time, but doesn't even try to put anything in his mouth!

Today the boys finally wore their Easter outfits high today 68 degrees! Much better:)

Thanks for the prayers!

Last Friday Luke had a lower GI test to see if he had an obstruction in his stoma or colon. The radiologist was able to put a catheter in his stoma, something they couldn't do the day before. The test looked good no obstruction was found. Stool started coming out of his stoma and rectum. The next few days they watched him closely. His stomach keep getting softer. The out put from his G Tube decreased. All good signs, he did not show any signs of an obstruction. Doctors feel because of his bowel problems he had an ileus. An Ileus is a disruption of the normal propulsive gastrointestinal motor activity from non-mechanical mechanisms. Motility disorders that result from structural abnormalities are termed mechanical bowel obstruction. Which also caused 3 serious blood infections. Also on Friday morning Lukie's nurse informed us that the Surgery team wanted to come and pull out his broviac. Mike and I got a little upset. His central line is his life line. It is VERY vital to him. There is only a number of places you can put a central line, and each one is very "fragile". So the nurse called the GI team and they were upset too. There is no reason to pull his line especially if we did not know if he would need surgery. So luckily we talked them out of pulling the line with saved them 2 trips to the OR, one to pull it out, and 3 days later put a new in. This morning at the hospital the plans were to take an x-ray to see if there was any contrast left from the last GI test Luke had done. And if things are cleaned out enough to do an upper GI test to double check if there is an obstruction in his small bowel. But when the team came around they asked if it was okay if they did not do the test. They felt there would not be an obstruction. Of course we said that would be fine! Then they asked how I felt about working for feeding with him at home. I have done this several times and feel more than fine. So they asked if we wanted to go home, heck ya! So after Lukie pulled his NJ tube out and we replaced it in radiology we were discharged!!!! We will have a GI appointment Monday and 10 more days of 2 IV antibiotics, which are a pain but better than 5 he started out with. I know are prayers were answered this week. Thanks for the love support and prayers!

Easter Egg Hunt Saturday
Issac, Kaleb, Alex & Jayden

Kaleb

Jayden

Isaac

Krissly & Kezlyn

The Older Boys Easter Mourning

Mom & The Boys after Easter egg hunt at PCMC!

Lucas First Easter

Lucas Can't Read Signs!!!

Too good to be true?

So we have been home for 2 1/2 months, I kept thinking it was too good to be true. We were beginning to get in routine and all the boys were loving life. I was excited thinking this would be our first holiday to be home all day together as a family. I even bought matching outfits for the boys to wear on Sunday. During our time home Lukie has had several ear infections and lots of sleepless nights. But it was so worth it. Our good luck came to an end today. Lucas has never really tolerated any feedings, but things have slowly gotten worse. I lowered his continuous feeds and nothing improved. Finally I stopped his feeds for a day and last night I started getting green bile from his G-tube. Green bile means there is a blockage. I knew our days were coming to an end. This morning he woke up with a fever of 103.8, higher than he has ever had before. I called the on call GI and told us to come to the ER at PCMC (Primary Children's Medical Center). They did the routine testing, blood cultures, and x-rays. He has not had out put from his ileostomy for over a week, and has had a harder time than usual going potty (with pebble poop). They called the surgeon to look at his ostomy, she tried to put in a catheter, but could not. This means there is stricture in in his ileostomy. The way to fix this would be surgery. His surgeon is out of town, so they will wait until Monday to talk to her and see what see wants to do. One surgeon we saw said he may not need surgery but his ostomy just won't function. So what is the point of keeping the ostomy? It will be up to his surgeon to decide. The resident just came in and said bacteria is growing from his central line. These results are pretty early so it must be a pretty advanced infection. They have him on 4 IV antibiotics that should cover everything. The ostomy possibly caused a blockage, which caused bacteria over growth in his intestines and infected his blood. They have had a hard time getting his fever down but it finally went down tonight. GI testing is scheduled tomorrow to see where the actual blockage is. They have told us tonight will be a long one full of enemas, blood work, antibiotics, and probably no sleep. It gets VERY annoying when your baby is tired and wants to sleep but every 5 minutes someone comes in to bug him. He is scared of everyone and won't let me leave the room. But at least we get our own room. We should know a lot more in a day or 2 we will keep you updated.

Thank You all for your thoughts and prayers. Much Love the Fullmer's

April Fools Day!

Today I decided to trick the boys for April fools. First I put food coloring in the bottom of their cereal bowls so when I poured milk on the cereal it changed colors (blue, green, and pink). Next I wrote notes on toilet paper and laid it on the water for them to read when they went potty as soon as they came home from school. Last I hide a dollar bill in the TP roll. The kids had so much fun they kept waiting for more jokes! Isaac got himself some how dressed completely backwards (not on purpose). Can't wait till next year!