Catheter Number Five

This surgery (#22) ended up taking a little over six hours.  The CT scan they did yesterday wasn’t done right, so they had to do another one during the procedure.  Here’s what was done.  First, the catheter on the front left of her head was replaced.  Before putting the replacement catheter in, the doctor put an endoscope down the hole to see if he could puncture some of the membranes that separate the various cysts.  Unfortunately, she doesn’t have typical anatomy in there and he couldn’t get comfortable enough with what he was looking at to start tearing holes.

Next, he checked the catheter on the rear left that Dr. O’Neill had placed two surgeries go.  If you remember, Dr. O’Neill removed a catheter from the rear left and inserted a new one in a new hole in Madison’s head a couple of centimeters to the right.  After confirming that this catheter was working, he then put an endoscope down the old hole that was vacated when Dr. O’Neill did his procedure (make sense?).  That way, he was able to use the endoscope to make holes in the walls of a couple of cysts.  That went well, and he was as even able to see the catheter that Dr. O’Neill had placed in the different hole.  This meant that enough spaces had been connected that the two holes led to the same contiguous space.

Finally, he added a fifth catheter down that original hole and hooked it into Madison’s shunt system.  Since there was already a hole there, there was no real harm in adding an additional catheter.  And since the two catheters are draining the same space, they are not both needed.  However, since the hole was already there, he added the fifth to provide some redundancy in the system.  That way, if one gets clogged, the other will still drain the area.  In fact, in theory, we’ll never know (or care) if one gets clogged as long as the other still works.  That being said, Madison now has five catheters in her head.  When Julie asked the doctor if Madison was his only patient with five catheters, he responded, “she was my only patient with four.” 

Madison was pretty upset when she woke up, which was not a shocker given the extent of this surgery and the extended duration of the anesthesia.  They gave her some morphine in the recovery area and planned to give her a second dose around midnight.  After that, they’ll see how she does on a combination of Tylenol and Tordal.  Julie stayed at the hospital, and I headed home to catch up on work and get a few hours of sleep.  I’ll update tomorrow on how she’s doing when I get a chance.

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Back for more :(

So, Madison is going back for more surgery (number 22 if you are still counting).  She’s doing OK right now; a little moody from time to time but no puking.  Tomorrow (Tuesday) she’ll have another revision to address yet another catheter that appears to have been plugged up.  In addition, one of the rear catheters that was repositioned three surgeries ago will be moved back to its original orientation.  These in themselves are “routine” brain surgeries but the doctor wants to do a little endoscopic clean-up while he’s in there.  Given her recent seizure and the increased chance for some bleeding, Madison may spend a couple of extra days in the hospital.  We’re optimistic that she will be home by the weekend.  We’ll keep everyone posted as the next surgery progresses.

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We’re all home

Madison seemed in a better mood and she was eating, so we elected to take her home.  She is still not drinking, which can get you back in the hospital faster than a shunt failure, but we are hoping that once she gets back home she’ll get back to usual.  She was begging to go to bed tonight so I’m looking forward to a refreshed 2 year old in the morning.  If we have to go back, we have to go back.  Luckily, we only live 5 minutes away.

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Good thing toddlers like to re-read books…

Well, we’re still enjoying the hospitality at Children’s Hospital.  Madison slept OK, and pretty much made it through until 5am.  Her mood is fine, but she is still not eating or drinking.  She refused liquids after about noon yesterday, but finally drank 2-3 ounces of juice when she woke up this morning. We really can’t take her home unless she can hydrate herself.  Her IV went bad, so they had to pull it.  On one hand, not having an IV makes things like eating and mobility much easier for Madison.  On the other hand, it also means a new IV if she doesn’t start drinking (and she is a very hard person to stick).

Her cold has really set in, and she is left with a really squawky voice and a really runny nose.  No fever, though.  Still, her mood is staying pretty good.  Right now, she is in her bed trading kisses with her Snoopy.

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Hanging out

Well, today was a lot of hanging around.  Madison had her MRI and it looks pretty much the same as the CT scan from Saturday.  The lateral space on the right they most recently worked on looks much better, but the lateral space on the left still looks large.  Madison has been in a pretty good mood for most of the day, and her fever has not come back.  She is still dealing with a really runny nose, however, and has started poking her finger up her nose like The Little Dutch Boy sticks his finger in the dyke.

The plan is just to wait and see.  She is still not eating or drinking, so she has to stay in the hospital.  At some point we’ll have to declare this a cold or a shunt issue.  Maybe tomorrow?

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Still here….

Madison was doing well, then not so great again.  She hasn’t been eating or drinking, but overnight she started drinking again.  She woke up at 12:30 or so for some juice and potty time, but otherwise got some sleep.  She started coughing and sneezing overnight, so she may have caught a cold just to pile things on.  She woke up thirsty at around 6, and drank a juice box.  At about 8, however, she threw up again (first time since before the seizure).  She fell asleep in the recliner in the room while we were changing her sheets.  When she woke up 30 minutes later, she was running a fever of 101.5.  She got some Tylenol, and within 20 minutes her fever was back down to 100.

She is going to get another MRI later today, but we’re not sure when.  Is her fatigue and nausea due to a shunt malfunction or just a cold?  Brain surgery or juice and chicken soup?  That’s the question of the day.

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Some Pictures

So I promised some photos; here we go.  The first bunch are from Madison’s recent hospital stay.  One of her therapists recommended we take photos and create a scrap album for her so we can review what happens at the hospital for her.  We have a bunch of photos for her benefit, but for here I selected a few highlights.  At the end are some recent photos of the other two.

Here is Madison and Dad in the MRI room.


Here is Madison in the MRI.  They show Dora videos on a little TV, so there is an upside for Madison.


Our regular surgeon Dr. Wilkinson was on vacation, so this week we were helped by Dr. O’Neill.  Here he is looking at the MRI results.  If you can see the picture, the large white spaces are the fluid collections we’ve been talking about.  Normally, those should be very small slits or not be there at all.


She got her first regular bed, as opposed to a crib, and really enjoyed the space.


The extra space is good for napping.  She looks really small in a big bed.


At Children’s , they have red Radio Flyer wagons for the kids to ride around in.  Madison loves hers.


Here are Julie and Madison about to go into the operating room.  We have to wear bunny suits, but we can go back with her before she gets the anesthesia.


Here are Madison and Dad in the operating room.


The surgery is over and Madison is still zonked out.


After every surgery, they do x-rays to confirm proper placement of the shunt


The morning after the surgery (before the latest seizure), she looked like she was pretty happy.  She had IVs in both hands, which made it a little hard to do anything.


The morning after the seizure, she was in a good mood again.  Here she is freshening up.


All clean!


That’s all the hospital pictures for now.  Two weeks ago, Aunt Beccy and Cousin Anna came to visit.  We took the kids to the zoo in Colorado Springs.  They let you get really close to the animals.


Noah is learning to climb really well.


And Chloe?  Monkey see, monkey do.


Last weekend, we took the kids to the beach at the Cherry Creek Reservoir.  Here is Madison enjoying some sun.


Here is Chloe enjoying a very sandy cheese stick.


Noah had a total blast.  Here is a panoramic of the beach.  The little guy running through the middle is Noah.


Noah stops for snack time.  He still looks like Bill.


Back at home, Madison hands out Cheetos for the others.


Madison also started pre-school last week at the Anchor Center.  Here she is about to go inside.


Here is her teacher Sarah welcoming her for her first day.


That’s all for now.  Madison is still in the hospital, but we’re hopeful she’ll go home tomorrow.

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