For those who did not already know, Luke’s shunt malfunctioned last week requiring him to have it surgically repaired. Because I’ve never gone into a really detailed explanation of this part of Luke’s life, I’ll take the time now because of the fresh reminder of its importance.
The shunt is located in Luke’s brain/head/body and is a device that is completely under the skin and starts with a catheter in his brain, leading out to a valve that rests against his skull and then tubing that runs down the rest of his head, behind his right ear and all the way down to right next to his belly button. Because of Luke's brain bleed when I was pregnant with him (why this occurred it still a complete unknown,) his spinal cord is permanently clogged so the excess cerebral spinal fluid (CSF) has to be removed from his brain an alternate way. The shunt carries the CSF all the way down to his stomach cavity where it is absorbed. In regular folk, the CSF drains out the spine and dissipates into the back. The excess CSF is called "water on the brain" or clinically, hydrocephalus, and is something Luke will be dealing with the rest of his life. The excess fluid building up in his brain begins by causing great discomfort (headaches, vomiting to relieve the pressure) and can eventually cause actual swelling of his entire head and ultimately further, irreversible brain damage. Therefore the shunt’s operation is vital.
Because the shunt has many parts (catheter, valve, tubing) there are going to have to be "shunt revisions" over the course of Luke's life. The quality of shunts has improved drastically over the years but revisions will still be necessary mainly because there are so many components. When it does not perform correctly it's called a "shunt malfunction." Unfortunately, and this was the most nerve wrecking part of this whole ordeal, a shunt malfunction presents itself like the flu. When Luke is older he’ll be able to complain of headaches, nausea, etc. but in a toddler with a limited vocabulary, it’s extremely difficult to pinpoint a shunt malfunction versus a common everyday flu.
To our knowledge, this ordeal began when Luke randomly threw up on Christmas morning but then was perfectly fine. After a nap on Sunday, December 28th, he was extremely lethargic and was completely not himself. We took him out to dinner where he ate but within 2 hours he had thrown everything up (twice.) We took him to the ER that night but after an hour or so he did a complete 180 and was back to his normal self. The ER doctor decided to not do a CT scan at that point as to not expose Luke to unnecessary radiation.
A relevant side note: a CT scan of the brain is the only really good way to know if there is a shunt malfunction occurring. If one is suspected, the scan is performed and then the results of the current scan are compared against the results of a prior “normal” scan for a patient with hydrocephalus. Because the radiation levels are high, the doctors try to perform as few as possible especially since a hydrocephalic patient will have so many over the course of their lifetime. They also do a “shunt series” which are x-rays of all the areas of the body that contain parts of the shunt. This is helpful in detecting where the shunt could possibly be malfunctioning.
Okay, so back to Luke’s story. By early Monday morning (the day after ER trip #1) he was fine. However by mid-morning he was very lethargic again. He took a 2 hour nap and woke up with a fever of 101. We took him to his pediatrician that afternoon (per the advice of the night before’s ER trip) and they took a look at him and sent us BACK to the ER. We hung out there for quite sometime (just waiting to get a bed) but by the time they examined him, he was doing well again. They finally did a CT scan (at the insistence of Summer, the pediatric nurse practitioner we work with at Stanford and who I tracked down via phone) and we were instructed to contact Stanford in the morning and that Dr. Guzman (pediatric neurosurgeon) would more then likely want to see us the next day. We were given the option of keeping Luke at the hospital overnight but he was doing so well by the time it came to leave, we decided home was best.
Does this kid look sick? The Sierra Vista ER doctor on Monday night didn't think so either...
I promptly called Summer the next morning and after her telling me that she really didn’t think we were dealing with a shunt malfunction (she had yet to compare the old scan with the new one,) we decided to head up to Stanford for peace of mind at the very least. Matt, Luke and I bombed up there and had face time with Dr. Guzman by 3:30pm. We were promptly alerted to the fact that there was, indeed, a difference. They showed us his “normal” CT scan from March and the one from Monday side-by-side and even as a laypeople, we could see there was an excess of CSF in Luke’s brain. The malfunction’s source was suspected to be the catheter they put in him as a newborn which was 3+cm (as big as it could be in his little head at the time) and it was now too short. In order for it to be in the correct place in his brain, a larger one had to be inserted. So they immediately admitted us (Luke was seemingly feeling worse by the minute) and the shunt revision surgery was scheduled to take place that night (Tuesday, December 30th.) A shunt series was performed to rule out any other malfunctioning components. The plan was to put a new catheter in his brain that was 6+cm. This one should be long enough to stay with him indefinitely and get Luke back to being Luke (with the appropriate CSF amount draining)once again.
Waiting in recovery for the OR to be ready. We had run of the place since it was almost midnight and between Christmas and New Years Day. Luke is not feeling too hot here.
Bye bye beautiful hair. Hello important, properly functioning medical device.
Luke and Dad right before he went into surgery.
The surgery was performed around midnight that night (so technically December 31st) and was deemed a success. They had to shave his head where the valve/tubing are and he has a "L" shaped incision and quite a few stitches on the top of his head were they accessed the catheter and brain. It’s in the same place as the first one so hopefully his hair will grow over it again like it did before rendering it invisible.
Right after surgery. Not yet out of anesthesia.
Never a moment alone.
Back in his room, getting situated. That's an IV in his left foot.
Post-op crazy morning hair. A combo of ointment, iodine, sweat, blood, etc. Gross but funny.
Bald patch = even more adorable.
So New Year’s Eve for the Henard family was spent with Matt and Luke in the hospital and me at my dad and Stephanie’s house (after a late night dinner at Carrows with my mom and John!) Matt and Luke rang in midnight asleep and I was washing my face getting ready to head to bed. BUT Luke was doing well and that is all that mattered.
New Year's Eve 2008. Our family resolution- no hospitals in '09!
Thursday, January 1st, started with Luke throwing up and running a fever. Not good but both quickly subsided, the fever disappearing after only one dose of Tylenol. Luke did very well all the rest of the day (though VERY BORED and requiring thousands of trips around the 3rd floor being pulled in a wagon) and was discharged on Friday morning with flying colors. His stitches looked good, his spirits were high (No more hospital bed! Getting to sleep without being woken up every hour!) and there does not seem to be any lasting effect from the malfunction. Crisis handled and ultimately, averted!
10 million laps around the floor and your surgery is free?! Done and done.
With my sweet smile I'll con my way out of this place.
We spent the night in San Jose (just to be sure Luke stayed 100%) and we headed back home to SLO on Saturday afternoon. We can’t believe that 2009 started out the way it did but we’re so thankful that Luke is now well and that we can get back to our everyday life.
Thank you to everyone for your thoughts, prayers, emails, phone calls and text messages of love and support. A really big thank you to the most wonderful husband and father I know, Matt. I was suffering from a sinus infection and was on antibiotics throughout this entire ordeal and Matt very kindly offered to stay with Luke at the hospital the entire time. Luke is absolutely in love with Matt and the feeling is completely mutual. They make quite the pair and I could not be more proud to be the wife and mother of such special guys.
Christmas pictures are soon to come but I wanted to get our story out there and ensure everyone that Luke is doing well. We hope everyone had a wonderful holiday season and Happy New Year!
