Tuesday, April 30, 2013

Some More Irritating Developments

Yesterday was the polar opposite of the day before it.

Everything started out well.  She woke up in a decent mood, went to the bathroom, passed more gas, and began to walk.  We played in the art room with paint and a very cool dollhouse.  She didn't put out any more liquid from her NG tube, so it was eventually taken out.  She was put on a modest clear diet (water, juice, jello, popsicles) and she was even happy and energetic enough during the day to dance around her room batting balloons.

Then, we noticed her central line was leaking.  Of all the freak things to happen, this one is completely strange (although when you're talking about a kid who has a defect affecting every 1 in 10,000, strange becomes normal).  So, after two different surgeries to put in the central line to begin with (one of which prompting the surgeon to say he's only experienced having to put in the line again every two years or so...again...of course it would happen to Karsie), it's still not working.

So at this point, Karsie has been sustaining herself on the clear diet she was put on and taking oral medication.  The good news is that she's doing an "okay" job of it.  (Okay means she is not drinking enough to be well hydrated...just hydrated...which hopefully is good enough until she can gain more strength by eating).  The bad news is, we're kind of at the mercy of our surgeon.  Due to some horrible communication yesterday, we're not exactly sure what he wants to do or what he even knows about since he wasn't at the hospital.  We hope he will let Karsie try to sustain herself and take out the line (as it's useless anyway) in the process.  Then, it's up to her.  However, we don't know what he's going to say.  We just don't want her to go through another trip to the OR.


Monday, April 29, 2013

A Rough Day but a Promising Night

Karsie had the worst day since being in the hospital this stay, and it can all be blamed on her shoddy veins.  Her bowels had softened a bit during the night, which was a praise.  She was more comfortable and looked as good as we've seen her.  Then, her IV blew.  After 5 attempts at resticking the IV back in (outch!) the team decided to go with a more permanent solution.  They took her into the OR for a procedure to put in a central line.  That is, they make a small incision just below her neck and run a line through a vein into her heart.  They did this and then sent her back to her room.  Then, they came back and said after looking at an x-ray that the line took a wrong turn and went up into her neck instead of her heart.  So, back to the OR Karsie went and redid the procedure.  Three times in the OR in 3 days is not fun.

However, during all of that, she began to pass gas (we've never been so happy for farts) which meant her bowels were waking up.  Throughout the evening, the swelling in her omphalocele has decreased significantly and she is feeling much better.  She was able to walk a few steps and take a ride in her wagon around the Med/Surg unit.  At this point, we're hopeful to be done soon.  Her bowels have deflated, they should be working properly soon, which means she will be allowed to eat and drink soon, which will give her energy, causing her to be able to move around and walk more, which increases motility in her bowels, and it keeps going from there.  That's the hope.  Here's to a good night.

Saturday, April 27, 2013


Here are some pictures from this hospital stay:

One of the few times she's been awake...for just a couple seconds.  NG tube inserted to deflate the gas in her bowels.

Not feeling well at all.  But resting.

First night.  Not feeling well.

Waiting to wake up.

Brave girl walking back to surgery with the nurse.

Getting dressed for surgery.

Hours before surgery.  She's only allowed jello and water.

Even More Woods

Things have not been going well for our little bug.  Last night, she spent most of the night retching, so much so that she had a few bloody retches (obviously this was a freaky thing, but the doctor said that it was from the intubation tube irritating her esophagus, and it was later confirmed as it went away).  On top of that, her bowels became distended again, causing the doctors to suggest giving her an NG tube to suck away the gases from her bowels.  Therefore, we are stuck in the hospital until things settle down.  Then, she needs to eat and drink, which she doesn't want to do because she's gagging, which is caused by the gases.  So, hopefully, things will start improving afterwards.  But a 4-year-old with a new NG...sigh.

Friday, April 26, 2013

A Rough Time

Karsie's surgery went well, but her recovery is not so fun.  I guess if you told any normal person that the doctors were going to make two incisions in her sides, separate her rectis and obliques, put in a plastic balloon on each side, fill it up a bit, then sew her up, that normal person would say "ouch".  However, for some reason, we were led to believe it was not that invasive of a surgery (most likely because it didn't mess with vital organs).  While that may be true, recovery from it is far from easy.

Karsie had a very rough night and has been in quite a bit of pain.  We spent all night trying to manage it well, but she's still very much in pain.  We'll be here at least another night, and we're hoping not to have neighbors again tonight.  It's hard to recover when two three-year-olds keep waking each other up.

Hopefully she'll get to come home tomorrow.

Thursday, April 25, 2013

She's out...

Thank goodness we didn't have to wait as long as we did last time we did this. Last time they put us in a small room and we waited over an hour for the surgeon to talk to us. This ti,e it took about two minutes

Karsie did well and she is sleeping off her anesthesia. We're waiting for her to wake up so we can give her her Popsicles (her pre-promised treat for after surgery....that and enough Disney movies to make her daddy go crazy). Thank you for all the thoughts and prayers.

She's in....

It's hard to type on this iPad so ill make it short for those of you waiting for an update. She went in at about 2:50 and we've been told it takes about two hours. Hopefully we'll have some news soon but at the moment we are just waiting. Karsie was very brave and walked in all my herself with the nurse.

Time to Start Up Again

Well...it's time to dust off the old blog.

Yes, it has been almost a year since we last posted anything.  We've always wanted to use the blog as updates on Karsie's omphalocele progress, and since there hasn't been anything medical to talk about lately, we've left it alone.

Karsie has had such a great year.  She is growing and eating (still not as much as the doctors would like, but she's going at her own pace).  She is happy and really bright.  We can't believe there was ever a time the doctors thought she might have serious brain damage.  That has definitely been an answer to prayer.

She's almost four now, and it has been easy to forget there's still lots to do for her to fix her omphalocele.  And that starts up again today.  Karsie will begin the process of closing this afternoon.  She is scheduled to have her tissue expanders put into her flanks/obliques/whatever her side muscles are, today.  The way it's been explained to us is that they will filet her muscle tissue on her sides and insert small balloon-like expanders (similar to breast implants).  Then, over the next few months, they will slowly increase the size of the expanders with saline.  Finally, when she looks like she has three omphaloceles (here real one and two large filled balloons on her sides), they will attempt to close her.  Most likely she will have another round of that in a year or two depending on how everything goes.

So, this afternoon, if you happen to read the blog that's been silent for a year, pray for Karsie's tissue expander surgery.  There was a time when these two parents were much more used to telling our daughter goodbye as the surgeons took her away.  Now, we've had years to have her to ourselves, and this is again a very scary process.  Thank you all.

Kevin and Michelle