Seizure #2

Yes, another seizure.  We thought this would never happen again, let alone 3 weeks after the first one.  This time was different......

Two days ago, we got up and started the day with a Target run.  Got home around 10am and Dallas just wasn't himself, but then again, he hadn't been himself for a couple of days now.  I gave him Tylenol and blamed his fussiness on his new teeth coming in.  We had an appointment scheduled at the U of M to discuss the MRI results and what it meant for cochlear implants.  My mom rode with me to the appointment for a second set of ears, and what else would you rather do on your day off!  Dallas slept through most of the time we spent at the U, and we headed home about 3:30.  He was so crabby on the ride, I thought we should stop in Inver Grove Heights and get him some Motrin ( I don't carry this with me, since he is not supposed to have it).  We had just parked in the lot when he started shrieking so loud, I immediately knew something bad was going to happen.  Just then he started convulsing, we both flew out of the car and got him out of his car seat.  My mom saw him first and said his color remained good while it was happening.  The seizure itself lasted about a minute, then a few more minutes for him to regain eye contact and start to cry.  We followed MOST of the directions on what to do should this happen, but I did panic and call 911.  After a few hours in the ER, they ruled out pneumonia, RSV, or other bacterial infections and sent us on our way with a directive to follow-up with a neurologist.  So, that is that.  I've made the calls and we are just waiting to hear back on whom to follow-up with.

The MRI results do show signs of Dandy-Walker, not the total syndrome, but a variant of it.  We were previously lead to believe that this was not the case, so this news was highly disappointing.  It wasn't a focus before, but the seizures have my wheels spinning...burning rubber in fact.  More on this later.

The MRI also gave the ENT surgeon a better idea on which ear to go after first relative to the cochlear implant.  We have decided to go ahead with it, and the surgery is currently being scheduled.  It will take 2-3 months to get the OR time, so meanwhile I am going to Mayo for a second opinion.  This is a big deal.  Even if everything goes well during surgery and he is able to implant every electrode, there is still a chance that Dallas's nerves will not respond, etc, etc.  It's going to be a long road and there are great risks, but we feel the benefits outweigh the risks and we're praying for miracles.

The plan is ever changing and we'll see how the neurology piece plays out over the next couple of weeks.  Meanwhile, the D-man has been having some fun....see below!

Laundry Basket Ride Anyone?

Cheeseball!

I love Easter!

First Haircut, the "before" picture.

After!  Holy Handsome. :)

Another one down

Dallas is home and has made it through yet another surgery.  I know I say this all the time, and I am bias, but this kid is amazing.  He was exceptionally good yesterday and last night, he just goes with it. He's our Rockstar, yes with a capital "R."

The ENT surgeon (Rimell) did a thorough exam and noted his nose was wide open, and ear tubes were clean and in place well.  So, he virtually did nothing surgically!  Great news. Also, he reviewed the CT scan which was completed to help determine success rate of potential cochlear implants.  The MRI is still needed to confirm cranial nerve exsistence, while the test is done, Rimell has not yet reviewed it. He expressed his concern, again,  given Dallas's anomolies, but also noted that Dallas has positvely surprised him already and wouldn't count anything out.  He admitted that he never thought Dallas would get by without a trachestomy and look at him now....

The urologist was able to complete the right and left orchiopexy with some difficulty, but all went good and he was able to do it all in one surgery - big blessing there.  He made 3 small incisions and 2 BIG incisions, ouch!  Let's just say that I nearly passed out when they first removed his diaper to discuss care.  He did give us some Tylenol with codeine though, which really seems to be working for Dallas. 

On a completely different note, Scott and I attended a seminar last week that was intended for parents who had a child that was both visually and hearing impaired.  We learned a great deal and met some wonderful parents as well. 

Morning of Surgery

Waiting to be taken away!

Hangin' with my keeper (she looks real happy!)

First Stroller Ride with no car seat - I feel free!

Who says you can't sleep through a bath!

Naps are for SISSIES!

A Haunting Memory

On Monday, April 4th, Dallas had a routine ECHO in the morning and an appointment to change his g-tube afterwards.  His ECHO went very well, and his g-tube was changed without any trouble.  Dallas didn't seem 100% himself, he wasn't eating his normal amounts, but wasn't fussy either.  We were at Children's for about 4 hours and then headed to my sister-in-law's (Renee's) house to pick up Dakota.  When we arrived. she was napping, so Dallas and I settled in for a visit.

Fast forward about and hour, Dallas was laying on the floor and Renee and I were next to him.  He looked tired and uncomfortable and he did a little shake, almost like he got a chill or got spooked!  I smiled and looked at him and it only took me a few seconds to realize he wasn't breathing.  His face became dusty, lips were blue, eyes rolled back.  Renee (thank GOD) called 911, and I proceeded to pick him up and scream and scream and scream.  After panicking all over the living room, laying him down, blowing air in his mouth, trying to think of how to do CPR, I ran outside with him and screamed for help.  It's a bit of a blur as pure panic took over my mind and body.   The 911 operator was telling Renee to get Dallas laid down flat on his back, so she started to tell me to do that and I came back in the house and laid him down.  Just then a couple of neighbors came running in and one of them knew what she was doing and took Dallas and rolled him over, by this time Dallas had food running out his mouth and nose and his eyes were back, his color was returning.  He was starring into space and although didn't seem "with" us, I knew he was alive. However,  I continued to be hysterical by the thought of losing him.

We went in the ambulance to Children's and they did many tests, although they said right away that Dallas had most likely had a febrile seizure (fever related).  This type of seizure is apparently very common (I have never heard of it) and happens in 1 of 25 kids during the age of 6 months and 5 years.  Half of these kids will never have another seizure, and the other half will go onto to have another one, or keep having them into childhood.  Prevention of fever is the key to keeping this from happening again, but in Dallas's case, we think the seizure might have happened first and then the fever.  Fantastic.  Anyway, they tried hard to find a source of his fever, and we had no luck.  All of his blood work came back normal, as well as his urine test and chest x-ray.  They also did a CT scan, because Dallas's mother (i.e., me) insisted on knowing that this wasn't a brain initiated seizure.  This too, came back normal.  On a side note, the ER stay was brutal for us and for Dallas.  It took 3 different people, 3 tries in his foot, one in his head, and finally ended in a finger poke, to get all the blood they needed.  It was gut wrenching to watch, but you know they have to get the blood in order to help him, so you can't beat them up!  The very second someone starts checking Dallas's veins, he knows what's coming and he just cries and cries.  It sucks.

His fever continued all day yesterday and we think it's teeth related.  His gums are swollen and he doesn't like to eat.  He seems to be feeling a little better this morning.  Happy boy!

I have informed Dallas sternly, that he is to never do this again. 

Watching Tangled, Dakota requested his presence and he was happy to oblige!