A Little Something Extra

Thursday, November 25, 2010

Staph infection

Oh, joy.  Micah has what appears to be a staph infection.  Let me lay down the history.  It started overnight Saturday.  He moaned all.night.long.  He seemed okay Sunday morning, though, so we headed to church (to say the roads were icy would be an understatement!).  Micah started wretching with his lunch.  Here we go...

Sick puppy Sunday evening.  Another night of moaning.  Fever of 101 when not on tylenol.  Off to the pediatrician on Monday morning because I was a bit concerned.  Micah's regular ped was out that day, so we saw Dr. M.
Micah's g-tube site was a bit red, but nothing outlandish.  Ears fine.  But his throat?  Not so much (red spots... looked like strep).  Labs run... CBC within normal range, but looking like he might be fighting some sort of bacterial infection.  Strangely, the strep culture came back negative.  I tried to hydrate him with pedialite through his g-tube all day, but we were definitely "behind on fluids."  His stoma site started leaking mid-afternoon.  Basically, when I pushed fluids in, some of it was leaking around his tube site.  Bad memory of that one (remember April, anyone?).  So, off to the ER for IV fluids.

ER doc (who trained at Children's of WI, just like Dr. H who saved Micah's life in the ER and PICU back in April) ordered x-rays to see if there was something wrong with his tube placement (side note: I so wish I had brought the x-ray orders for Micah's spine x-rays to check for AAI... it would have been fairly easy to get those done during this trip because he was so wiped out he didn't challenge anything in radiology).  Doc also ordered the IV fluids and ran blood cultures (didn't hear anything back from that... I'll check on those on Friday).  I expressed concern over the challenge of getting an IV into Micah (his last overnight stay at the end of September resulted in him actually not getting an IV because they couldn't get a vein).  Micah's nurse called in an experienced pro, Lois, and she got a line into him on the first shot (it wouldn't have worked with a mobile kid... she put it in the top of his foot... but hey, whatever works).

We were out of there in about five hours, which I guess isn't bad, but it's still draining.  Micah slept most of the night, only waking once, which is better sleep than he often gets when he's healthy!  We pushed him through yesterday, trying to stay on target with fluids.

All day yesterday I had noticed that when I looked directly down on mic-key button, it appeared that there was brown stuff inside his stomach.  So Mark and I decided to take out his button, clean it off a bit, and put it back in.  The button was fairly new (I changed it out a couple of weeks ago) and I hadn't ordered a new spare yet so we couldn't change it out, but we wanted to see what was going on.  Probably TMI here, but brownish goo oozed out when we took out the button.  Rut ro.

Called the pediatrician this morning and mentioned the brown goo and that the inside corner of his right eye was red.  Quick trip to the pediatrician turned a bit longer than expected.  For one thing, there was a 2nd year med student with her (it's the second time I've met a medical student who was shadowing her... I love that she does this... and I especially appreciated her telling the medical student that Micah's medical issues were not the norm with Down syndrome).  She was planning to look at his g-tube site after checking his ears.  While looking at his ears, she noticed that he had a little rash with white bumps above his left ear.  I had seen it the day before, but I figured it was his skin reacting to the haircut he had gotten on Saturday.  As soon as she saw that little area above his ear, she proclaimed, "That's staph."  She said that explained the eye thing, the little red bump on his cheek, and the goo around the tube site.  I also told her that he was sporting a red rash on his belly when we were in the ER on Monday.  The look on her face was almost horror.  Or was it disgust that the ER doc didn't do more investigating?

Quick finger prick showed an elevated white count.  So, before we left the pediatrician, the nurses made a solid effort to get blood drawn for a culture.  No way, no how.  They asked Dr. B how to proceed.  Ultimately, it made the most sense to get rocephin (an antibiotic) on board, so he got a shot.  Tomorrow he starts two weeks of augmentin.  She cultured around his tube site, so we're hoping that comes back and shows us exactly what we're dealing with.  Please pray that it's not MRSA (the antibiotic-resistant form of staph).  That would require a sulfa-based antibiotic and I'm terribly allergic to those, as is my father, and I'd rather not experiment with Micah's ability to tolerate those drugs.  Likely port of entry for this round of staph is his g-tube site (stoma).  This is a great example of my love-hate relationship with his feeding tube.  Glad it exists... keeps him alive.  But then this junk happens.

Micah has a LOT of sinus drainage going on (which was the other reason she chose augmentin because that would fight a sinus infection).  I think his tonsils (that obstruct 80% of his airway) make dealing with sinus drainage super uncomfortable for Micah.  He's been drooling all day (I think his throat hurts).  And he's woken a lot already this evening, primarily due to the sinus stuff, I think.  This drainage is an even bigger problem for him, as his swallow reflex is still being developed.

We had been planning on a long drive to our family farms in SE Missouri this week.  We miss my family very much, but we're very thankful that Micah got sick BEFORE we left and not while we were down there.  We would have been over 3 hours from St. Louis Children's.

Sorry to bore you with all the medical stuff.  I'm sure that Micah's immunologist is going to ask me all about this and it's very helpful for me to be able to just point her here rather than me trying to remember all this when we see her in March.

Happy Thanksgiving, everyone.  We have much for which to give thanks.

Sunday, November 14, 2010

Well... THAT'S not going to work

Did you hear about the snow in the Twin Cities yesterday?  We officially got 11 inches and it was super wet (and it melted a bit today, but it will not melt anymore this week, I hear).  This first photo was taken from our front door.

I had a retreat at church on Saturday for moms of kids with special needs.  No, they don't cancel stuff up here for a snowfall like this!  It was a great day at the church.  Mark told me before I left that he was going to try taking the boys' Christmas photo in the backyard while it was snowing (aka, he wasn't going to wait for me to come home).  Hm.  Okay.  Have fun with that.  He texted me at noon and called it the "Bah Humbug" photo shoot.

So... Matthew was not excited by the snow AT ALL.

And then a branch above them dropped a bit of snow on their heads.

Micah was getting pretty mad by this point.

Small success in getting Matthew to stop crying

But it didn't last long

The wind is picking up and snow is falling in faces

And finally, Nathan screams, "It's COLD!!!"

Are you waiting for me to share the perfect shot?  Ha!  We'll let you know when we attempt this project again.  Though I confess I'm considering using one of the above shots for the Christmas card. :-)

Thursday, November 11, 2010

Free cards from Shutterfly

I read about this promotion from Rebecca at The Bates Motel blog..... 50 FREE Holiday Cards from Shutterfly!

Free? Excellent! Are you a blogger?  Follow the arrow to get 50 free holiday cards from Shutterfly:
-------> http://bit.ly/sfly2010
Mark and I have lived in way too many places since we met.  And we grew up in different places and we went to different colleges.  So our Christmas card list is a bit long.  We usually do a photo card.  The past couple of years I've used Vistaprint because I like making our card myself.  One of the reasons is that I just haven't found a card that I like.  Personally, I like Christmas cards that allow me to express my faith.  Right or wrong, I don't worry about offending someone who may not celebrate Christmas.

But true "Christmas" cards that are classy are more difficult to find than "holiday" cards that are classy.  Shutterfly actually has a link to Religious Christmas Cards and I found some I like.  I'm still undecided on my favorite.  Maybe this one.  It sort of makes me laugh, though, because the actual verse (from James 1:17) says, "Every good and perfect gift."  Good thing it doesn't say "perfect" on the card or I wouldn't be able to use it for our family photos. :-)  I really like this one, but I don't anticipate getting a portrait photo of all 3 boys (I'm hoping for a landscape photo that looks decent).

I also like this one.  But Shutterfly has some fantastic choices for "happy holidays" as well as "merry Christmas" (that don't fall under the "religious" category).  If I wasn't going for the "religious" tone, I think this one would be my choice.  I really like how you can personalize the front of the card to give brief updates on the kids (how convenient that there are three ornaments).  Ultimately, the card choice could be made for me depending on whether we get a good photo of all three boys together or whether I need to use separate photos of each boy (the more likely scenario).  Best case scenario: I get all of the above and can get this card.

Most of those choices assume I'm going "cheap" and not getting the folded card.  But I love that Shutterfly allows you the opportunity to insert photos on the INSIDE of their photo cards as well as on the outside.  So now that I'm looking at all of THOSE cards, I find this one.  How fun!  Four extra spots for photos on the inside.  That would help me a lot as I always have a difficult time choosing photos.

Well, now I just need to get our photo session scheduled.  I'd love to use the "stamp and mail for me" option, but it's a bit pricey when I consider how many cards we send out.  And I have a five-year-old who can apply stickers like the best of them!

Sunday, November 7, 2010

Orphan Sunday - will you help Dmitri?

It's November 7th, Orphan Sunday.  In Eastern Europe, there's a special little boy named Dmitri who will be three years old this month.  He's only two months older than Micah.  He happens to have Down syndrome.  Where he lives, it's perfectly acceptable for him to be abandoned at birth because he is "disabled."  He has no mommy or daddy to kiss him good night, just because he has an extra chromosome.

Micah would not have survived a week if he had been born there.

If Dmitri is not adopted before he turns five years old, he will be sent to a mental institution where he will spend the rest of his days without anyone reading him a book or teaching him to count.  Do you wonder what those institutions are like?  Julia and her family recently adopted Aaron after reading about him on Reece's Rainbow.  Yesterday she blogged a bit about her experience there (have tissues on hand when you read her account... it's horrifying).

Our family decided a few years ago that we don't need to keep buying toys, etc., for the cousins.  We give money to charities instead.  Would you consider helping Dmitri find his forever family by donating to his grant fund?  We can ALL help orphans, even if we don't adopt them ourselves.  Dmitri's family is out there somewhere.  And we could help them bring him home.  An adoption from his country is one of the most expensive international adoptions.

There are children who have come home to the U.S. because their forever family didn't have to bear the full cost burden of their adoption, thanks to people like you (and me).

Please help us save Dmitri.  I look at his sweet crossed eyes and I think of Micah, who has been blessed with early intervention for his strabismus.  I long to see a photo of Dmitri smiling with a family.  I just KNOW he'd give the best snuggles a family could ever dream to experience.

Grants from Reece's Rainbow have helped over 350 orphans with special needs come home in the past four years.  They make it easy for you to help.  And for every $35 you donate, you can get an ornament that has the Reece's Rainbow logo on one side and Dmitri's photo on the other side.

Click here to see Dmitri's page and donate.  Don't believe the note that says that he still needs a Christmas Warrior... that would be me!

Thank you for considering this little boy's life as a gift this Christmas.