Dr. Lukie

Every week when I do Lukie's dressing change on his CVL he wants to put a dressing on someone.  I also loves to give people g-tubes.  Here are some pics of Lukie playing doctor with Mike.

 Lukie gave Mike a picc line, ostomy, and g-tube

 Taking vitals to make sure he is ok!

 I found this for Lukie......

Boys will be boys!

Here are some recent pics Mike took of our handsome young men.

This is random but this is what a pair of Isaac's shoes like after 2 1/2 months!  This kid goes through shoes so fast!  

We were on a good run.....

It has been AMAZING that Luke went 19 months without a central line infection.  This is his longest record ever.  Last weekend our long streak came to an end.  Saturday night he came down with a low grade fever and was restless and vomiting all night long.  Sunday morning his fever reached over 101.5, which means he needs blood cultures.  I called the on call doctor, and of course it was Dr. Jensen, who we Hate!  So I called his GI doctor and they ordered homecare to drawn a CBC and blood culture from home.  As the day went on he continued to get sicker. But we did not think he acted like his normal line infection symptoms, but acted more like a virus.  It was a loooong night.  Poor little guy vomited at least 30  times, and his fever reached 102.7 (not good for a CVL kid).  I was on edge all night, instinct told me the doctor would call telling us to come to the hospital because we had positive blood cultures.  I even loaded the van and almost drove to the ER at 2:00am.  But since we had already had blood cultures drawn we decided to wait until morning to go into Dr.Later's office.  We went to see Dr.L first thing in the morning.  He walked in and gave us the look I have seen one to many times.  He said the cultures were growing a type of staph and we needed to head to the hospital, but assured us he would get us out asap, because we have dealt with this so many times at home. So we spent the next 4 days at our home away from home.
We did learn a few new things this hospital stay........
1. Emla cream (magic lotion) is amazing!
    Lukie is old enough now he is scared to go to the hospital or doctor's office because he will be poked.        He asked if they could put him to sleep for his blood draw:)  They told us about Emla cream.  you rub it on the skin where they will draw blood, wait for a hour, and it numbs the skin so you can't feel the needle!  Amazing!  Why no one told us about this earlier?  I have no idea!
2.  Lucas can no longer has antibiotics in the Penicillian family.  They started a dose of Zosyn (also known as pippercillian), with in only a couple minutes he started screaming "My tongue my tongue!"  He was very panicked, and itchy all over.  We discovered that he has had zosyn so much he has created antibodies against it.  They gave him IV benadryl and it knocked him out for a few hours.  Poor little guy was convinced he had a heart attack.  Every time a nurse would come in to give him any medications he would say "Please don't give me that heart attack medicine!"  We assured him he would never get that medicine again!  He still talks about how he had a heart attack:(
3.  I have been asking Homecare to give me alcohol caps to put on the end of his clave, while not attached to TPN, for 3 years.  It's always been crazy to me that his line sits there, next to his ostomy, prone to get infected.  They finally agreed to give me some because they use them in the hospital now too.
4.  The antibiotic we came home with is just like a little water balloon.  Water balloons are Lukie's favorite thing ever!  It is pretty awesome.  All I have to do is attach it to his CVL, clip it to his shirt, and unclamp the tube.  So easy, and cool too:)  We are giving abx 3 times a day for 2 weeks at very specific times.  But it is worth it to be home!

 Lukie finally earned his ceiling tile that will hang in one of the rooms.

 Dennis busy at work drawing a poisonous frog on Lukie's door.

 Lukie made a Buddy doll.

 Lukie discovered he could ride his IV pole and had so much fun!

 He also learned how to ride a bike with peddles.  He Loved it!  He rode it around, and around, and around for hours.  He even had races with Dennis.

 HOME!!  With his cool abx water balloon!