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Line Infection
By Margot | June 30, 2009
Sam has a line infection. They cultured something.  That would explain the fevers. He is now on Vanco which he has to be premedicated for because he gets redman’s syndrome so he is sleeping at the moment.  Neil said he woke up happy and in a good mood before I got here then tried to eat something and had horrible acid reflux again. We got some great suggestions for drugs and foods to try, he’s on IV protonix but it doesn’t seem to help at all. Last night I got him to eat some apple cut up into small pieces and some broth and that didn’t hurt too much. Yesterday he was on morphine for the pain which seems crazy but he is in a ton of pain after he eats anything.Â
So the Vanco course will probably be a week -maybe two twice a day.  It runs over an hour and a half. We’re trying to see if we can’t get home health care to come and do it at home if we ever get our ANC to go up and get out of here. It is 8 today. Yesterday it was point one and the day before it was less than point one. Â
When Sam is not eating he’s in pretty good spirits but doesn’t want to get up much so we are making him get out of bed. Angela (the awesome child life specialist) is trying to get his own playroom time again today. Yesterday he had it but didn’t want to go because he was in too much pain from having tried to eat something.  We read the abridged version of Moby Dick yesterday and he really liked it. He wanted me to read the whole thing so we did.  The whole family watched Transformers last night in Sam’s hospital room, I didn’t get Andy and Charlie out of here until 9:30. Neil took Andy and Charlie out to play for a while last night while I sat with Sam and the hospital was having karioke night in the playroom. Andy sang Eye of the Tiger for the whole crowd and Neil said he was a big hit. He hit the wall about the time I was getting them out of here and on the car ride on the way home he said, “It’s not fair. Other families don’t have kids with bad guy cells. Why do we have to have bad guy cells? Why does Sam have to be in the hospital?” I’m telling you my armchair psychology skills are getting a workout this week. I talked to him for a long time but am not sure if I was helpful or not. I actually got on the Internet when we got home and showed him a picture of a cloud with a silver lining and tried to explain what it means. Pretty cliche. This morning we drew some pictures which seemed to  help. Maybe I’ll try that with Sam today.
Andy is at tennis today with Coach Joe and then will play with Luke until basketball practice tonight -thanks Meredith.  Charlie is home with Elizabeth and is waiting for Jett to get better. He says randomly “I wonder when Jett will be better, I think maybe Wendesday” sometimes he says, “I think maybe Friday.”Â
I booked Sam’s birthday party yesterday for the 10th of July at the Laser Tag place. He’s very excited – that perked him up a bit last night. . We are going to Philadelphia on the 15th for a consult.  If we get out of the hospital with Vanco, Sam will have to stay accessed which will suck but at least he’ll be out.  I’m counting my chickens though because with an ANC of eight the egg hasn’t even been laid yet, much less hatched. That’s about all the sucky news I have to report. It will be even suckier though if the Vanco doesn’t work and we have to take his line out so even though I’m whining about Vanco – I hope it works.  One day at a time.   Thankful Sam is feeling good when he’s not eating. He loves his nurse Kaitlyn who is bringing him a pictures of the Atlanta Falcons quarter back Matt Ryan who she knows from college.  She’s been great with him. He talks football with her and yesterday was telling her that his favortie player on the Giants team is the tall running back (I can’t remember his name).
Hold on the LDH in the 400s because at least that means this chemo, with all it’s bad and far reaching side effects, might be working.  MIBG scan is scheduled here for the 8th.
Margot
Topics: Progress Reports | 9 Comments »
June 30th, 2009 at 6:54 pm
Sending positive thoughts and well wishes as I sit in the clinic as Melina gets her 2nd day of chemo. Not much food going into her body either these days between nifurtimox and chemo BUT we do the best we can as we try and fight the beast as best we can. I hope the Vanco works and you find something to give his stomach some relief.
Thinking of you all and sending prayers,
Lisa riniolo
June 30th, 2009 at 8:26 pm
Keeping you in our thoughts
June 30th, 2009 at 9:31 pm
Sucks is the right word. Lots of good wishes and getting better thoughts are headed your way. Wishing Sam a better hour and a better day tomorrow. Jan
June 30th, 2009 at 11:39 pm
Crap! Line infections are horrible. I’m so sorry. But, hopefully the vanc will do the trick and you can save the line.
I did ask Elle (age 10) for a recommendation. She said all the boys and girls in her class thought the graphic novel Bone series by Jeff Smith http://en.wikipedia.org/wiki/Bone_%28comics%29
was really really funny. I don’t have a copy, or I’d send it.
Lara Weberling
(Hans’ mom)
July 1st, 2009 at 1:33 am
Hi Margot and Neil- hang in there! I bought some goodies for Sam to play in his bed. I will drop it off at the nurse station in the afternnon tommorrow. Angela (Madison’s Mom)
July 1st, 2009 at 2:01 am
Margot, Glad that the fever mystery has been solved. Man, Sammy has just tried so hard to smile through this whole ordeal this week. He sure is your kid that way. Let me know if YOU need the next book, I’m happy to keep dropping off more novels for you to eat up. So happy that you’ve booked the laser tag for the b-day bash. We’ll start gathering the black clothing and tennies for stealth-like action in the laser arena. Here’s hoping that food will become fun again soon for Sam. Let me and Mack know when we can bring more bagels or blueberry muffins that Sam CAN eat rather than just want to eat. Lotsa Love, Lisa
July 1st, 2009 at 4:10 am
Hey Margot- I’m glad they figured out what was causing the fever-although I’m sorry that it’s his line- I sure hope the Vanco does the trick-now if they can only figure out what’s causing the acid reflux………
If he’s up for it-we’ll come over on Thurs. for a game of Clue Jr.!
July 1st, 2009 at 4:17 am
Sending good thoughts to the California Hutchison’s.
Tom and Abby
July 1st, 2009 at 7:57 am
So sorry about the infection. We were a DIY family when it came to vanco — you don’t need a nurse to do it.