The Verdict Is In

February 17, 2011 at 7:05 pm | Posted in Uncategorized | Leave a comment

Last week we spent an agonizing day at Children’s Memorial Hospital having Sophie evaluated for her reflux with a follow-up to her pediatric urologist this week for the test results.  She has not spontaneously resolved any of the reflux so she is going to have surgery.  We have two options: a less invasive procedure with lower success rates and a more invasive procedure with higher success rates.  It is so hard to make decisions like this:  on one hand I know that we have to fix this.  But to be the parent and make the decision to put your child at risk, even though the outcome is in her best interest, is so freaking hard. 

Shortly after I was married my husband had back surgery.  I remember thinking, as they wheeled him towards the operating room, that if something happened to him I had to make the decisions regarding his care.  And that freaked me out big time.  I didn’t think I should be responsible for making decisions about his life even though he was my husband and technically it was part of the job description of wife.  It just seemed like he was a grown man and should be in charge of his own care…and in the event he couldn’t make his own decisions I thought hey, maybe his Dad would want to make these decisions.  Thankfully nothing bad happened and I didn’t have to make any decisions but the reality and gravity of that situation was overwhelming.

Now I find myself in a similar situation knowing that my daughter has to have a procedure to repair a malfunctioning part of her body.  But when the doctor started reading through the list of possible complications and their outcomes I wanted to walk out of the room and throw up.  I don’t think I could live with myself if something happened to her…even thought I know logically that if this issue isn’t corrected much worse things lie in wait for her so not acting is not an option.  The odds are in her favor and I love her urologist – he is very cautious and not anxious to cut her open.  So have to put my faith in him and what is best for her and hope to hell all runs smoothly.  It won’t happen until after the school year is finished so we have some time to prepare.  But we also have time to wait.  And think.  And worry.

Be Prepared

February 13, 2011 at 6:46 pm | Posted in Uncategorized | Leave a comment

Once  you become a mom there are certain things that you are pretty much not without.  I’m sure there is a point where you stop carrying these items on your person but for me, for now, these are the things I always find myself “packing”:

-snacks: of both the salty and sweet variety

-wipes: will I never be without these?

-poop bags: even though Henry does not wear diapers, there is an endless use of the diaper disposal bags and I find I cannot leave them behind (no pun intended)

-crayons and paper: always a good go-to items when kids are starting to melt down

-aspirin/advil: because I always seem to be just a moment away from a headache

-water: because someone is always, always, always thirsty

-kleenex: because snot never, ever seems to go away

-hand sanitizer: because germs are always lurking

-miscellaneous garbage: from candy wrappers, used kleenex, sticker backings, straw wrappings…pretty much you name it.  Trash winds up in your purse and you have no idea how and/or why

-miscellaneous “friends”: my kids always seem to be in need of having a “friend” to travel with them.  It could be as small as a plastic dinosaur and as large as a beanie baby but I always seem to have a traveling companion.

-hand sanitizer:  something that I always want to have on hand too…because dang, shopping carts are nasty.

Big Girls Don’t Cry….But I do

February 8, 2011 at 3:25 pm | Posted in Uncategorized | 1 Comment

I don’t know how parents of chronically ill children manage.  I mean I guess you don’t have a choice.  If your child is ill you do what needs to be done to get them well.  But the stress on them.  On the parents.  It sucks and my kids aren’t even chronically ill.

About a year ago Sophie was diagnosed with reflux in one of her ureters which is the tube that leads from her kidney to her bladder.   Basically it is only supposed to drain out but the valve that regulates urine movement is faulty resulting in urine being able to travel back up into the kidney.  This has resulted in a series of kidney infections resulting in some minor permanent damage to her kidney.  We put her on daily antibiotics for the past year hoping to keep any new infections from happening.  There was a small chance that the reflux would resolve on its own. 

We were at Children’s Memorial Hospital this morning to check the reflux in her ureter.  To do so, a catheter is inserted into her urethra up into her bladder and a contrast dye is presented into the bladder.  If the reflux is present, you can see the dye travel from the bladder up into her kidney.  Which we saw today.  So the reflux has not resolved on its own.  Most likely she will need surgical intervention.

The worst part about today is that it took 6 attempts and three different individuals to get the catheter inserted.  Two of the six attempts actually got the catheter in but it was not in the right position.  Meanwhile my daughter is beside herself.  Screaming when they are attempting to get the catheter in place and my husband and I are holding her hands, trying to ease the pain and terror she is feeling.  There is nothing.  NOTHING.  like staring into the eyes of your child while they are being poked and prodded and helpless and screaming in pain and fear.  You are so completely helpless and trying to explain how important this test is to see if her kidney is better or still sick.  The worst part was knowing that multiple attempts were necessary and to watch her fear build as she realized it was going to happen again and again…..

When a pediatric urology resident finally came in and got the catheter placed properly I broke down.  I couldn’t take it anymore.  I had told them that he could try once and if it didn’t get in then we were done.  I wasn’t going to put her through anymore and we would regroup with her urologist to determine how to get the test done without so much pain and anxiety for all of us…but mostly Sophie.  She was so strong and amazing and once it was in place she was able to breathe a sigh of relief and assured us, “I know it doesn’t hurt when they take it out.”

So now it is 3:24 pm and I’m having a beer to destress….and if I could legally offer one to Sophie I would.

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