One Week

One week until a huge celebration.Here is where we are at seven days out...

Since Sam's recent infection he was healing nicely and his central line site looked really good.  Unfortunately Sam ripped his dressing and pulled on his line earlier this week.  He pulled hard enough to actually tear the site open and move the cuff (which is a piece of plastic that his body "heals" onto after the line is placed and holds it in his body).  Since that time, his site has deteriorated. 

Tomorrow I will be taking off his dressing to clean the wound and redress it.  Tonight I can see that he is still bleeding and there may be some other discharge as well. 

Depending on how the site looks on Sunday, we may be headed to Milwaukee for an admission where we will do everything we can to attempt to save the site.  If the infection has spread to the cuff we will most likely not get this infection to clear up and could mean surgery to place a new line.  This will be more complicated than it has been in the past as we have to either have a Femoral line placed (in his leg) or have them search for a usable vein elsewhere. 

Still hoping that the site looks worse now then it really is.  It is very possible that I could get the dressing off and clean the site and it could look fine. 

Either way, we are moving forward with plans for next Saturday.  Hopefully if we do end up in Milwaukee we can get in and get out and be home in time for the party.

Looking Good

Sam's site has continued to improve over the last two days.  We will be stopping his antibiotic this weekend and will continue to watch his site closely.  Thankfully, we caught this infection really early and it never made it to his blood stream so right now it appears that we were able to save his site.

In other news, we have a new addition to our family. Buddy came to live with us on Thursday.  He is a 4 month old Black Lab/German Shepard mix.  He currently enjoys licking the children and peeing on the carpet.

Buddy is very mellow and a perfect match for Ryan and Sam.  He is going to be a big boy so he will be able to tolerate years of "attention" from the kids.

So Far So Good.

Sam site is looking a little better today, hopefully we will continue to see things move in the right direction over the next couple of days.  We are not out of the woods until the site completely heals again.

Nothing else new, and not really much to update.  Sam has not been phased by the infection or the screwy schedule that we have to follow in order to infuse his antibiotics at home.  In fact, he slept through a lab draw at 9 tonight.  If only I could sleep so peacefully.

Home for now.

Sam and I arrived back home early this morning.  We started IV antibiotics at the hospital and will continue them at home and closely monitor his site.  I am trying to remain hopeful that we will be able to save his line, but with our past history I would be lying if I said I wasn't very nervous.

Having a child who visits the ER regularly and has frequent inpatient stays is a different experience than going to the ER with a broken arm.  Almost everyone at our local hospital knows Sam.  This normally makes it very easy to get the treatment that he needs.  We normally speed through the ER and the ER doctor almost always pages the peds specialist for us as soon as we get there.  They are the people that know Sam the best and have cared for him the most locally.

So when a certain doctor walked into our exam room last night I was less than pleased.  I have dealt with guy before and knew right then and there that I was in for a long night.  He does not feel the need to contact Peds. He doesn't want to hear our ideas on how Sam should be treated. He couldn't even be bothered to look at Sam's site to see what it looked like.  He refuses to consult with Boston or Milwaukee.  I doesn't feel that a central line site infection is an emergency and we should have just waited to be treated in clinic in the morning.  He really just doesn't care.  Why would you become a doctor if this is how you feel?

Many parents with medically fragile children deal with this attitude on a regular basis.  We never experience this locally and that is the reason that we try to stay here whenever we can and only move to a "bigger" hospital when things get beyond what they are comfortable dealing with.  The next time Sam needs to go to the ER, I will be calling first to see who the ER doctor is before heading to the ER.  A 2 hour drive to Milwaukee is better than ever having to deal with that doctor again.

We will be headed into the clinic this afternoon for a check on Sam's site.  He is still asleep so I haven't been able to take a look at it yet, but hopefully it is looking the same or better than last night.

4 good months come to a screeching halt

4 months with no admissions, no infections, no major issues.

That ended tonight.  I am sitting in the ER with Sam waiting on labs and to talk to the ER doctor (who is the same jerk that was here the last time we were at the ER).  Sam's site is infected, again.  The infection looks pretty mild, but that can change in a hurry.  Hopefully we caught the infection before it made it to the cuff (which it looks to me like we did) so we can start antibiotics and hopefully save his line.

I am not sure yet if the are going to just do a dose of antibiotics and then send us home or admit us yet, but I will update when I know more...

Party Details

2 is a big deal in our house.  2 is the age we were told Sam would not live to be when he was diagnosed with Microvillus Inclusion Disease.  Thanks to our friends, families, a select few doctors, and a couple  hundred bottles of Omegaven we have reached age 2 with a healthy toddler.  Looking at him during the 12 hour period everyday when he is not connected to machines you would never guess the experience that we have been through the last 2 years.

Sam continues to thrive and loves trying new tastes.  Eating for Sam is not really eating, swallowing is not happening for him, but he does enjoy tasting food and sitting with us at the table.  His favorite taste so far is lemon juice.

No other new news to report on Sam.  We are busy trying to finish up a few last small remodeling chores and getting the house ready for Sam's big day.

If you have a moment, please keep the Cates family in your thoughts and prayers.  Carter has been giving the doctors in Texas a run for their money lately.  Cater's website can be viewed at www.cartermcates.com.