The Summer that will live in infamy forever!! Where do I start? Let’s start with June 11th…Jeff and I had just returned from a fabulous mini getaway for our anniversary. We popped down to Galveston for 2 days and stayed at Moody Gardens. Little did we know how much we would have to rely on that built up rest the next month an a half! On Sunday night, the 10th, I began noticing that Karsyn was acting a little “off” nothing major, just not herself. Monday morning as Sidonia (our nanny) came in and I headed out to the gym I even mentioned to her that I was beginning to get nervous, and I wanted to keep a close eye on Karsyn today. By the time I finished at the gym, (which I would love to say was 2 hours later, but let’s be honest it was 45 minutes at the most) I had a message and a picture from Sidonia saying something was wrong with Karsyn’s neck. I got home and found this egg sized knot on the right side of karsyns neck/chest/shoulder. It almost seemed as if her should had popped out of place. After moving her arm around and ruling out dislocation, it dawned on me that this swelling was right along her shunt tract (the tube that goes from her brain, down and across her neck and into her stomach to drain the excess spinal fluid). At this point I start getting everything prepared, and while I make the obligatory call to my pedi, I know I’m going straight to the ER. As I’m turning the corner to head into TCH, the phone nurse calls me back, as I politely tell her I’m almost to the ER could she just inform Dr. I, she begins almost laughing saying she’s certain I don’t need to be at the ER, she can squeeze me in in an hour. I again, somewhat politely tell her to please inform Dr. Isenhower of my whereabouts (sidenote: my dr. who is AMAZING, told me later that she laughed at the nurse when she came to tell her that she had a parent overreacting! She said please make note to always listen to this mom, she know’s what she’s doing!)
I digress! So we’re now in the ER….we do xrays and a CT scan, residents come and go, nurses come and go, fellow’s come and go, and FINALLY dr dauser makes it by! If you’ve followed this blog for long you know that I pay no attention to to residents….fellows I listen to half of what the say….when dr dauser talks, I listen! He’s a little confused and concerned. The CT scan looks fine which indicates it isn’t a shunt malfunction (meaning the shunt is blocked and in need of a revision), but the swelling and redness seems to indicate an infection. So, the plan is to start a high power antibiotic, admit Karsyn, and get infectious disease involved to make sure we’re using the correct antibiotic – have I mentioned that I love being so close to a world renowned childrens hospital? All the while they are running cultures on her blood to see what bacteria/infection grows.
Not exactly the news we were wanting, but we start making plans, I of course had brought enough stuff for an over night stay, because sadly this isn’t my first rodeo
But getting the boys squared away and etc took some planning. Long Story short we spend 5 days at TCH. On the 15th it was decided that they thought they had the infection under control, no cultures had grown which was good, so we could go home but we had to have a PICC line put in and do IV drugs at home for 7 more days.
Not excited about home antibiotics, but excited to have my family under the same roof! It had a been a LONG week. Jeff was still working summer school so mommy was pretty much on overnight duty every night! I was T.I.R.E.D.
A week later we had a check up with Dr. Dauser. the swelling wasn’t completely gone and he wanted to continue antibiotics for another week and then reassess. UGH…whatever. The next recheck was set for the 28th at 2:00…that morning the swelling, which had receded quite a bit, began to get worse and the redness returned. Not good news. So by 10 that morning I called Dr. D’s office to see if I needed to wait or come in early…they said to come on in. Being the good mom that I am, I went ahead and took Brady to swim lessons, fed Karsyn lunch and THEN took her in Dr. Dauser wasn’t pleased but he got over it!
All that while I was assuming we would be changing antibiotic or something…oh no, I knew I was in trouble when Dr. Dauser came by before his entourage of residents and fellows ever came in the room. He walked in, took a look and said “we’re externalizing the shunt, when’s the last time she ate” me: “ummmm I’m guessing the grilled cheese sandwhich I just fed her doesn’t make you happy?” After getting a little scolding which I completely ignored, he scheduled surgery for 2 hours later. Now I’m frantic calling Jeff, getting the boys squared away and dealing with what’s about to happen.
Basically because the shunt is a foreign object in her body, the infection was latching onto the tubing. to get rid of the infection, we had to get rid of the tubing. Now it wasn’t until post surgery that we figured out what externalizing a shunt actually meant. The tube that used to run internally now literally hung from her scalp and drained into a contraption on a pole. Said pole had a laser pointer on it, that laser pointer controlled the level of the drain. Because of the pressure in the brain, before Karsyn could move (post surgery) the drain had to be clamped and re leveled. every.single.time.she.moved. I remember the night, post surgery, that the nurses looked at us and said you just need to keep her still. I was so emotionally and physically exhausted that I just burst into tears. How exactly did they want me to keep my 2 year old still? How do I “explain” this to her?
So, we began what would be our 14 days with an externalized shunt. It was exhausting, frustrating, and exhausting! Basically we sat on the couch/bed and held Karsyn for 14 days. Anytime we needed to get up or change positions we had to call a nurse. Most of the time they were really quick to come in and help. Other times it was frustrating! We, for the most part, had fabulous nurses, and Karsyn was a celebrity by the end of our stay! Even the cleaning crew fought over who got to come in because the loved hearing Karsyn’s sweet, high pitched, HIIIIIII…over and over!
Once they were satisfied the infection was under control they began talking about putting the shunt back in. Surgery was schedule, and then cancelled because her white blood count was too low, and then rescheduled for the next day! The shunt was sucessfully replaced, and two days later, on July 14th, we were allowed to leave!
She has been great ever since! Once we got home it took quite a bit of retraining to remind Karsyn that she didn’t HAVE to be held all day every day, and she was pretty set back with her physical and occupational therapy, but now, more than a month post TCH vacation we’re pretty much back to normal!
And we’re thankful! These journey’s aren’t easy, but being in the hospital for a total of 21 days opens your eyes to other who are there longer and more often and sometimes with no hope of a future.
We’re so thankful for all the visitors , cards, calls, texts, and fun goodies! Our little girls is loved by so many! For those of you that took the time to check on us and Karsyn and to pray for our little girl…we are forever grateful!
No blog is complete without a few pictures!!
this is right before the first surgery…they’d just given her some happy juice and she was hysterical! You can also see the big knot just to the right and below her chin.
snack time
balloons from her brothers!
hanging out in my room!
on day 12 they decided she could play on the floor for a while! She was in heaven!
before the second surgery…waving bye bye to the pole that was our drain!
quite possibly my favorite picture ever! These boys missed their sister!
I’ve got my purse I’m ready to go!
seeing the light of day after 16 days!!
I know I’ve said thank – you, but our mom’s deserve a thank you all on their own. Grandma and Nana each spent a considerable portion of their summer either keeping the boys, staying a night with karsyn, running carpool, doing grocery shopping….basically whatever I asked of them! We could not have done it without either of them! We love you guys!
