Saturday, October 10, 2009

Good morning all.  A quick update.
Sarah took over hospital duty last night.  I just saw a Facebook post from her that Ethan’s doing well, though he was fairly restless during the night.  Hopefully, both of them will be able to get some sleep.
Ethan has a staph infection in both lumens.  The infection will also be in his blood stream.  They took a blood sample from his arm yesterday morning, to gauge the progression of the infection outside of his central line, but we haven’t seen the results yet.
We talked to the infectious disease docs late yesterday afternoon, and they told us that the particular strain of staph infection that he has is not considered very resilient, but that it particularly likes to attach to the plastic in central lines.  Even though it is considered a “weak” strain, since the central line goes into the veins near Ethan’s heart, the infection is serious and they’re going to treat it aggressively.  In addition, if the infection get’s too far along, it is possible that Ethan’s central line will be corrupted, and they would have to do surgery to remove it and place another.
Ethan is receiving IV antibiotics every 8 hours.  They’ll be drawing regular blood samples and will keep him in the hospital until he doesn’t show any infection in his blood stream.  They think that means that Ethan will be discharged on Monday. After that, he’ll continue IV infusion at home 3x per day for at least 14 days.  (Oddly, learning how to administer an IV to a family member is not a skill I ever particularly wanted to learn.)
So, 14 days from Monday is the 26th.  Ethan is/was? Scheduled to be admitted to start chemotherapy on the 21.  I can only think that his admittance and preparatory chemo will be delayed, but we’re waiting for word from the docs.
Ethan is doing well, he sure don’t look sick.  His energy is good, his temperature is normal.   It looks like we caught this infection early, and that catching it was pure coincidence.  In hindsight, it looks like the red, swollen area at his insertion site that we noted on Sunday was simply tissue healing over the insertion site, and was not a sign of infection.  That we misinterpreted that and took him in to have a blood sample taken, was our fortunate mistake.
Ethan’s biggest complaint at the moment seems to be that he can’t leave his hospital room.  Ethan’s got a slightly runny nose and an occasional cough and the hospital is on full H1N1 preventative mode, so the little guy is on isolation protocols.  He can’t leave his room and all the nurses and doctors have to gown up and wear masks whenever they come in. He had so cold like symptoms on Thursday when he was in for his enzyme replacement and so they had him in isolation there too. 
E’s pretty sick of being stuck in hospital rooms. He’s ready to go walk-about.  Every little while yesterday, he would come over to Grandma Lilianne or myself, take our finger and lead us over to the door.  Then he’d knock on the door and look at us, as if to say, ‘Come on, fix the door, and lemme outta here.  You can do it.’

His cold symptoms are so mild that if he were in school, you’d easily send him off to school, at least you would before H1N1. The nurses are on our side too, none of them really think he should be on isolation, either.  Every now and again yesterday, I’d call the nurses’ station to see if Ethan could take a walk in the hallway if he wore a mask?  No.  Could we sneak Ethan out to the outside courtyard to play?  No go there either.  They took a nasal swab on Wednesday to check for the flu, but the results haven’t come back yet.  I hope they get the results back soon.  The little guy was happy to find that he hadn’t explored the bathroom yet, and that kept him busy yesterday evening, but it’s a small bathroom, and I think he’s mostly done there—unless his parents relent and let him start playing in the toilet.
Sarah and I, with help from the grandparents, are going to trade off hospital duty this weekend.  While one’s at the hospital, the other will be running around at home.
Caleb’s fifth birthday is November 30.  Caleb had said that he wanted to have a birthday party at JJ Jump, which is this play place with a whole bunch of inflatable slides and bouncy houses, and obstacle courses.  They’ve got like 15 different humongous things for kids to bounce on, over and through. We figured that Ethan would be in the hospital by that point, so planned to have an early birthday party there this weekend before Ethan went into the hospital.  So the birthday party is on for this morning, and it is going to be a blast, but it’s a shame that Ethan won’t be there.
After Caleb’s birthday party, he gets an hour and a half break before he has to go to a friend’s birthday party.  This one is at a place that’s got scale model trains for the kids to ride on.
Caleb is gonna be one happy camper today!  Not to mention that he hasn’t realized that we’re celebrating his birthday before the actual day and he’s really excited about turning 5.  Guess he’ll get to be 5 a little longer than most people.
I’ll take over from Sarah this evening and spend tomorrow with him.  On Sunday, we had planned to take Ethan and the gang down to see Sarah’s great Aunt Margaret and her cousin Brian on their farm in Salem.  We don’t get to see them too much.  I think Ethan’s only met her once or twice, and we wanted to say how-de-do, before Ethan went in for the transplant.  Well, unfortunately, Ethan won’t be able to be there, but Sarah, Caleb, and the grandparents are still going down.  Caleb will have fun looking at the farm equipment and the Aaserudes will have fun singing and fiddling the day away.  Then Sarah will take over from me Sunday evening and have Ethan Sunday night and Monday.
I was talking to Sarah on the phone yesterday, updating her on the latest doc conversations, and Sarah said, noted that I didn’t seem particularly worried.  And I am not too concerned at this point.  Ethan is strong and his energy is good, we seem to have caught the infection early and I think this is just one of those things that’s going to happen—and probably a pretty minor one compared to what’s in store. 
But, I said, I think it’s also easier to be the one with him at the hospital because you can see how he’s doing, and you can talk to the doctors directly—when you can find them.  I think it’s harder to be the one who isn’t at the hospital.  When Sarah and Lilianne took Ethan in for his MRI, I won’t say that I was a nervous wreck, but I was a worried, unhappy camper.  When I talked to Sarah on the phone Wednesday, she’s all, “yeah, everything’s fine, no worries, see ya.” And I’m all “but, but I need details, hey don’t hang up!”
As long as Ethan’s energy stays good, we’re doing okay, and if they could let him outta the room at some point, we’ll be doing even better.