Where did I go?

As you may have noticed, my entries on this blog have slowed to a trickle.  Most of my inspiration for this content was driven by medical emergencies which have blissfully become less and less frequent (knock on wood).

I still plan on updating this space with current pictures of the kids and news on our lives, but my other writing projects have taken more of my time than I expected.  If you want to be alerted automatically to updates on this blog, use the “Follow Blog via Email” tool to the right.  New entries will be sent to your inbox as they are posted.

If you want to follow my new writing projects, please check out http://billsgoodread.com.  You can subscriber to automatic updates there too.

Thanks

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#25 Comes and Goes

Last night, Madison had her 25th brain surgery. Here’s what happened.

For about the last three weeks, Madison has been complaining of occasional headaches. This also coincided with the spike in Summer temperatures, so we weren’t sure if she was experiencing a shunt issue or a previously demonstrated vulnerability to dehydration. It had been almost seven months since her last surgery, so we scheduled her for an MRI. It was time to do one anyway.

Last Friday, we took her for an MRI and the results were not favorable. Pressure was clearly increased in a couple of areas in her brain. On the top is a image of her brain from last November. On the bottom is an image from last Friday.


You may recall from an earlier posting that the white spaces are fluid collections that do not exist in someone with normal physiology. The big difference between the two is the fluid collection that has appeared on the top left of the recent image. This indicates the catheter on the right front of her head may not be working. Plus, the grayish stripe that borders the top of the new the fluid collection indicates there is some swelling in her brain. Our doctor was on vacation, but the nurse that walked us through the images felt that, despite Madison’s mild symptoms, a surgery was very much warranted.

Her regular surgeon was back this week and the procedure was scheduled for Wednesday evening. After some mechanical issues with the 3D guidance system, surgery started at around 8pm last night and wrapped up just after 9. Here’s what the surgeon told us.

The catheter in the right front was still working, although at a reduced capacity than intended. In addition, the catheter had become detached from the rest of the shunt system. The catheters are connected to tubing that in turn connects them to the drainage valve. The catheters are attached to the tubing much like you would push the joints of two pipes together and are further secured with a surgical stitch to hold them in place. It’s not uncommon for the pieces to pop apart, despite the stitch, as a patient grows. The doctor thinks this is what happened in this case. The catheter in question had not been touched since 2009 and, other than this most recent issue, had been working fine. He slid a second catheter down the same hole with a slightly different positioning to try to reach more fluid collections. He then pushed fluid in the new catheter and was able to see it flow out the old catheter. This meant that the new catheter was in the same space (or at least a same space) as the new catheter. The old catheter was removed, and that was that. Our surgeon believes that the increased pressure in the right-front was causing the increased pressure in the other areas. So, this should resolve her issues for now.

We’ve pretty much run our course on “minor” surgeries at this point. As you can see from the images above, she does not have one large space but a series of adjoining spaces that all need to be drained. If Madison needs another surgery, she will likely move to a more significant but hopefully more effective procedure. The surgeon thinks there is a high likelihood that the more significant procedure will need to happen, but only time will tell as to when.

In the meantime, Madison is still a little grumpy this morning (who wouldn’t be), but she is eating well and might come home late this afternoon if her day goes well.

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Back home

Madison is back home, about 40 hours after she first checked into ER.  Her mood tends to fluctuate and she didn’t eat a great dinner, but we’re hoping it’s just recovery from what was an otherwise successful surgery.  The kids are happy to be together again, and we’re all relieved to be at home.

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24

Saturday brought the surprise of Madison’s 24th surgery.  She had been doing just fine until she woke up Saturday morning.  She drank a little bit of water upon waking but wouldn’t eat or drink anything after that.  She was cranky and tired, and combined with the lack of appetite; this led us to conclude we had a shunt failure on our hands.

I took her to the ER at about 4:30 while Julie stayed at home with the other two.  Check in was a total breeze, which was a pleasant surprise.  The ER at Children’s Hospital tends to be the pediatric clinic for the neighborhood that surrounds it.  The times we’ve gone there, we’ve had to wait behind hoards of kids because they have coughs, have low grade fevers or they are just looking to get their general checkup for school.  When I got into line, the nurse came over to triage and I told her what was going one.  She took one look at the sniffling toddlers in line ahead of us and ushered us into a room in the back immediately.  Very nice.

From there it was into the usual hospital groove.  Get the music playing for Madison, break out her Snoopy blanket, get wrist bands, etc.  After about an hour and a half, they were able to get us in for an MRI so they could diagnose the issue.  Around 7:30, one of the neurosurgery residents came by and told us that the images confirmed a shunt issue.  The spaces on Madison’s right side looked enlarged and she would need to be scheduled for surgery that night or tomorrow morning.  There were a couple of more urgent cases ahead of us, so the exact schedule wasn’t clear yet.

Gia came over to watch the kids and Julie was able to join us at the hospital between 8 and 9.  I went to the cafeteria to grab some dinner, and by the time I was back, Madison was confirmed for surgery later that evening.  She was getting more and more lethargic throughout the day, and she was pretty much asleep after this point.  We were checked into a regular room around 9:30 and waited until surgery time.  Surgery finally happened a little after 1am Sunday morning.

After dropping Madison off at surgery, Julie and I went back upstairs to the room to try and take a brief nap.  The surgeon came by at around 3 to tell us everything had gone well.  He replaced the catheter he suspected was not working.  He also replaced the valve that controls the pressure for the entire system.  That was done at our request.  The old valve was working fine, but it was a magnetic adjustable valve.  It was first placed over a year ago when they were unsure what pressure setting to put it at.  The benefit of a magnetic valve is that you can adjust the pressure without operating.  The downside of a magnetic valve is that expose to  magnets (in speakers, toys, kitchen magnets) might reset it without your knowing.  Since her setting was static over the entire time period, we asked if we could have a non-adjustable (non-magnetic) valve places so we could stop worrying about magnets and we could stop wondering if Madison was experiencing a plugged catheter (brains surgery) or simply a reprogrammed valve (5 minute office visit).

Madison was pretty tired when we got her up stairs, but then again we all were…it was after 4am.  A little before 5, I went home and Julie stayed at the hospital.  I got to sleep around 6:30 and slept until about 9:30, but Julie wasn’t able to fall asleep at all.

Madison was in a pretty good mood upon waking and had a huge appetite.  She also drank a ton of fluids throughout the morning, despite also getting hydration through her IV.  By 1:00 she had turned cranky again and as I write this she has settled into a nap.  This could mean one of three things 1) she’s tired, 2) she is feeling some discomfort due to the changing pressures of having the catheter swapped, or 3) the issue isn’t fixed and she’ll need another revision.  We’ll know more after she wakes up.

As far as the other two, Gia stayed overnight.  She was relieved by Carolina who in turn was relieved by the Langers.  Thanks for all of the help.  We couldn’t do this without you.

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#23, but it was a fast #23

So, what did you do this weekend?  Nice dinner out?  Mowed the lawn?  Watched some college football?  We didn’t.  This weekend brought surgery #23 for Madison.  Admittedly, with triplet two-year olds, we wouldn’t be doing any of the aforementioned activities anyway.  By comparison to what we ended up doing, however,  we would have rather been at home changing poopy pants.

On Friday Madison was not doing well.  She had stopped eating and was getting really cranky.  Julie made an appointment for her for an MRI and clinic appointment for 2:30 that afternoon.  The MRI showed a significant accumulation of fluid in the right side of her brain.  Here is the picture of the scan,  The scans are reversed, so the left side of the image is the right side of her brain.

Our regular doctor was away again, so one of the other doctors, Dr. Hankinson, was lined up to do the procedure.  None of the other spaces looked larger, so the suspicion was that the catheter draining that specific space had clogged.  The plan was to go in and check one or two of the catheters until the clogged one was identified.  If all of the catheters were working, one of them might need to be repositioned but that was unlikely.

I joined Madison and Julie at the hospital around 5:30 and by 6:00 Madison was in the OR.  At around 9 pm, the whole thing was over.  (Note the quick turnaround this time.  ID the symptoms early afternoon.  Scan at 2:30.  Surgery done by 9).  As it turns out, the first catheter they checked was not working, so Dr. Hankinson replaced it.  We were up in a room by just after 10pm and Madison fell asleep just after 11.  Julie went home to be with the other kids, and I stayed at the hospital for the night.

The big scare of this episode was the impact on Madison’s vision.  During the day on Friday, she was not making any eye contact and just kind of looking out into space.  Since she was so upset by the pain, however, we didn’t think too much of it at the time.  When she got out of surgery, however, it became clear that she couldn’t see. When we’d asked what an object was, she’d give an answer but was often wrong and was obviously guessing.  The doctors said the generalized increase in pressure might have impacted the optic nerve pathways which could be impacting her vision.  We tried testing her again in the room, but she still couldn’t see anything.  At around 10:45, her vision started to come back, and she started to identify objects and colors.  At this point, she seems back to her normal.  Phew…she has enough to contend with.

Madison was up just after 6 on Saturday and she seemed on the road to recovery.  She was pretty floppy (didn’t want to stand up or sit up straight), but her mood was vastly improved.  The doctors felt, while she seemed better, the most prudent path was to keep her one more night for observation.  She’s a pretty complicated case, as you all know.  Amanda brought the other two kids by the hospital so we could all have dinner together, and Julie stayed the night with Madison.

She seems in a great mood this morning (Sunday), we’re optimistic this was a quick event.  She came home around 10, just in time for football.  I take back what I said earlier.  We do some regular stuff…

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Home

Madison was discharged this afternoon, and we’re home again.  She’s pretty tired and was begging to go to bed (how often does a 2 year old do that?).  We’re assuming she’s just worn down (like the rest of us) and will look better after a good night’s sleep (like the rest of us).  We’ll keep the kids close to home for a couple of days to give Madison some time to heal.  Her incisions look a little more gruesome than normal for some reason.  Hopefully she’s in the clear for a while.

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Doing Well

Madison is doing well this morning.  She had a comfortable night and is now playing in the recliner in her room.  The doctors think she looks well enough to go home as early as this afternoon assuming this keeps up.  Her pre-school teacher Sarah came by to visit today, which really cheered Madison up.

Madison had become addicted to our iPad, by the way.  Between the various Little Einsteins episodes and the collection of kids games, it’s become one of her favorite toys.  I’ll take it away from her when she starts doing things I haven’t figure out how to do myself yet.

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