Brock Rocks

July 30, 2010

Back in

Filed under: Uncategorized — Vanessa @ 10:30 am

Positive blood culture. Being admitted.

July 23, 2010

July 23, 2010

Filed under: Uncategorized — Vanessa @ 11:40 pm

I apologize for being so “quiet” lately.  Last fall and winter when we were in the hospital and Brock was so sick, it was easy to update.  He slept or sat in my lap all day and I easily had 30 minutes a day to sit down and right a post.  Now?  I barely have 30 minutes a day to eat.  Ok, that’s not true.  I love to eat and can always make plenty of time for that.  But, blogging?  That’s harder.

The reason we were back in the hospital over last weekend is because the skin around Brock’s g/j tube got infected as soon as we stopped the antibiotic.  They started that same antibiotic again (vancomycin) and we’re finishing it at home.  So we’ll do 2 weeks of iv antibiotics and then switch to an oral antibiotic for 2 weeks and that should get us up to the date of the surgery (Aug 17th).  We’re doing this because if that skin gets infected again (or doesn’t clear up) before the surgery, then they won’t be able to do it.  And the timing of the surgery is important, because we need it spaced between his doses of steroid.

Speaking of which, we started steroids again today.  In the past, they’ve made him crazy.  Not just “I’m cranky and irritated because I’m on steroids” crazy, but full-out, screaming for hours a day, kind of crazy.  This month the doctors also gave us a prescription for phenagren.  It’s’ supposed to help with the steroid-crazy.  I sure hope so.

He also had a spinal tap today.  He did so good!  And it helps a lot that we had a really good person there to hold him down.

Tomorrow night we’re taking Brock to the Children’s Miracle Network ‘Dancing for a Miracle’ fundraiser.  Since Brock is a CMN Miracle Child, they’ve asked us to come and share a little bit of his story with everyone.  You all know I’m a numbers person so I’ve spent several hours this week reading through ALL of the blog posts and counting up things….10 CT scans, 60+ xrays, 4 chest tubes, 7 surgeries, 100+ transfusions, 11 weeks on oxygen, 19 consecutive weeks inpatient, 193 days total inpatient…98 days total at home.  This Sunday will be Brock’s 100th day at home.  It seems like just yesterday, and also 10 years ago, that we were celebrating his 100th day in the hospital.

Thank you so much for keeping up with us these past 291 days.  Your love, support, and prayers mean so much to us.

July 19, 2010

Going home…

Filed under: Uncategorized — Vanessa @ 10:09 am

Again.

July 16, 2010

Back in the hospital

Filed under: Uncategorized — Vanessa @ 3:53 pm

Again.

July 13, 2010

July 13, 2010

Filed under: Uncategorized — Vanessa @ 1:36 pm

The clinic appointment last Friday went fine.  His vanc level was actually lower than it should have been so they inceased his dose from every 12 hours to every 8.  We finished the round on Monday.  Praise the Lord! 

He goes back to clinic next Wednesday (the 21st) for iv chemo and a spinal tap.  The last time we tried a spinal tap it didn’t work so please pray that it goes better this time!

Also, our oncologist is going to talk to our infectious disease doctor about when it might be ok to stop the last iv antifungal that he’s on (ambisome).  Of course we would be thrilled if we could stop it because then his port wouldn’t have to be accessed all the time and he could do normal-kid stuff.  Like bathe.  There are other, more important reasons to want to stop it though.  It’s pretty hard on his kidneys.  Or maybe liver.  Or perhaps both.  So we’re praying that ID will give us the go-ahead on stopping the ambisome soon.

Brock’s still making good progress on his gross motor skills.  He definitely re-mastered the art of crawling.  I posted on facebook a few days ago that there’s nothing quite like following a toddler around with an iv pump while he crawls all over the house.  Now he’s working on pulling up and bearing weight on his legs.

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July 7, 2010

Exciting News

Filed under: Uncategorized — Vanessa @ 9:40 pm

The vanc level came back within the normal range this morning (after hours of trying to get his port to draw).  Praise the Lord!  We got to come home this afternoon and will continue the iv antibiotic at home.  We have a clinic appointment on Friday morning so they’ll draw a vanc trough then, as well as some other labs.

In more exciting news, Brock has been making lots of developmental progress in the last few weeks.  When Sooner Start came to evaluate him almost 4 weeks ago he couldn’t even lay on his tummy and push up with his arms.  Two days ago he started crawling again!  He’s also started signing “ball” (his FAVORITE toy to play with) and “water” (for his sippy cup).  We’re so thankful that God is continuing to make him stronger every day.

We have a date set for the g-tube/fundo surgery.  August 17.  We’re praying that God would continue to heal his body and remove scar tissue so that the surgeon will be able to do the fundoplication.  We’re also praying that doing the surgery will help him be able to transition back to eating real food.  It’s been 9 months since he’s eaten more than a few bites of food.  Not eating weakens the muscles in the mouth and is causing speech delays as well so this is definitely something that we want to work on.

Tomorrow we should be able to see the proofs from Brock’s Children’s Miracle Network calendar shoot.  Can’t wait!  Also, Jay, Brock and I were invited to the CMN’s Dancing for a Miracle Gala and asked to share a 3-5 minute version of Brock’s story.  (Ha!)  They’re also using Brock’s footprint for some type of gift for all of the sponsors (or maybe all of the attendees…I’m not sure).  We’re very honored to be a part of the event.

I posted some new pictures to Flickr.  The link is over there on the right.

Please continue to pray for our friends who lost their 2 day old son last week.  Pray also for some friends of  ours from the hem/onc floor who are trying to decide whether or not they should keep treating or let their daughter go to be with the Lord.  The daughter was a CMN miracle child last year.  We’re praying that the peace that passes all understanding rains down on both of these families.

July 6, 2010

Kidneys, redux

Filed under: Uncategorized — Vanessa @ 4:13 pm

Well we were all set to go home within the next hour and then…no. 

I’m too tired to explain the whole thing.  In short: his vanc trough level was WAY too high.  They’re drawing a stat cmp and will draw another in the morning.

I know that means nothing to most of you.  Mostly, it’s just for my own record keeping.

The bottom line: pray that his kidneys are ok.  He has kidney issues anyway (between the fungal infection, the antifungals, and chemo – all of which damage kidneys).  This antibiotic he’s on (vanc) can damage kidneys too.  If the trough’s too high it means his kidneys aren’t clearing it well enough.  I think.

Hoping to go home

Filed under: Uncategorized — Vanessa @ 10:39 am

Brock’s done well over the weekend. All of his repeat cultures have been negative and he hasn’t had a fever since Sat. He still needs to be on an IV antibiotic (vanc) for the rest of this week but I think it’s something that we can handle at home. It’s a drug that he’s allergic to though so we’ll have to give IV benadryl at home as well. Of course this in addition to the IV antifungals we already so. It’s a lot, is what I’m trying to say.

We had an appointment tomorrow to meet with Brock’s surgeon to discuss the g-tube/fundo. But b/c of this infection around his g-j tube site the surgeon has cancelled the appointment and rescheduled for Aug. Of course we want what’s best for B but it is a little frustrating to have that pushed back again.

July 3, 2010

When ‘positive’ is a negative

Filed under: Uncategorized — Vanessa @ 11:34 pm

Brock’s blood cultures from last night grew 2 different organisms (gram positive cocci in chains and clusters). The culture they did of the area around his g-j tube also tested positive for staph. Please pray that these infections respond quickly and completely to the antibiotics he’s on.

July 2, 2010

10 of 11

Filed under: Uncategorized — Vanessa @ 6:45 pm

Looks like we’ll be spending the 4th of July in the hospital. 10th holiday out of the last 11. Must be a record.

Brock hasn’t technically had a fever (101) but it’s been close and the skin around his g-j tube site is red and infected so they’re admitting him to give him iv antibiotics (vanc and ceftaz). Thankfully his AGC is still good.

Please continue to pray for our friends who lost their 2 day old son this week. His funeral was today and I’m sure the coming days and weeks will continue to be very hard for them.

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