Seizures Are No Fun!

Wednesday went a little different than we had planned.

We had friends over and we were making fermented pickles (http://www.myhumblekitchen.com/2013/07/a-simple-recipe-for-homemade-natural-fermented-pickles/).  The kiddos were having a blast playing together.  They played inside quite a while but then went outside to play. 

After our friends left I went outside to bring Madi in.  She wanted to tell me all about a grasshopper she had seen so we chatted a while.  Then she looked at me and threw up.  I thought she may be over-heated, so I took her inside to cool off.  I grabbed her seizure medication, just to be on the safe side, and headed to my room to rock her under the fan.  She was being her normal spunky self and was yelling at me telling me she didn't need her medicine.  While I was rocking her she fell asleep.  She woke up about 15-20 minutes later when Conner came in the room chatting, but threw up again.  After that she proceeded to do her repeated dry-heaving that usually indicates the start of a seizure.  I gave her one of her seizure rescue tabs to try and stop it ASAP.  She was still talkative, though she was becoming a little slower to respond.  She was NOT happy with me for giving her the medicine.  I am sure they taste terrible.  I watched her for a few minutes but the seizure was continuing to develop (she started staring off, not responding much, and her left leg had started rhythmically jerking).  I gave her a second rescue med and watched her again.  The second tab didn't stop the seizure either, and then her right arm started jerking rhythmically.  Our neurologist wants me calling 911 while giving the 3rd rescue med tab so that she can be evaluated by the paramedics and then be brought in to Phoenix Children's Hospital if needed so I called 911 while giving the 3rd tab.  When the fire department got to our house it was like she was trying to talk to me but couldn't, and she kept trying to reach out so I held her hand.  It was hard to see her like that.  They put oxygen on her and she finally fell asleep.  They were able to get an IV in her foot, which is always so nice.  I was so thankful!!  I handed her to David so I could change my shirt (I had lots of throw up on me), and then I grabbed my hospital bag and we headed out to the ambulance.  Madi slept the entire ambulance ride, and continued to sleep about another hour-and-a-half once we got to the hospital.  She woke up for about 30 minutes for testing, then went right back to sleep for almost another 2 hours.  It was a good thing she got to nap because we didn't get in to a room until almost midnight! 

The first thing we did at Phoenix Children's Hospital was check her shunt with an MRI and x-ray series, but everything looked good.  They thought there may have been a very, very, very slight increase in her ventricle size, but they said it was hard to tell because the MRIs cut through in different places.  They weren't worried but wanted to watch us overnight.  The ER doctor did note she had moderate stool back-up.  They said it could have been putting pressure on her shunt, which may be causing a slight increase in fluid.  The neurosurgeon (ours wasn't on call so we saw someone else) didn't seem to think that was the cause, though, as there wasn't too much build-up.  I am cleaning her out just in case, though.

The ER doctor thought that her electrolytes might have been imbalanced since she had been outside, but her levels came back fine.  Her Keppra level was pretty low, which they thought may be from throwing up.  They decided to give her some IV keppra to make sure she kept it down and got her levels up.  They also increased her dosage from 6 mg 2 x a day to 6.5 mg 2 x a day.   

We went home Thursday after Dr. Shafron, our neurosurgeon, got to see Madi.  He didn't want us to go home before he got to evaluate Madi himself.  Though it was hard waiting until his clinic day was over, I do really appreciate that he cares about Madi and wanted to take the time to evaluate her himself.

Thursday  night we relaxed and went to bed early.  We both appreciated the good night's sleep!  Madi is now back to her normal fun and spunky self, and I am so thankful!  I'm praying this change in dosage, as well as the extra keppra she got, will keep her seizures away.  I'm a little freaked out because she has only had one other day-time seizure.  The majority of her seizures are when she is coming in or out of sleep.  It was almost reassuring having them at night or early morning, because I am always there during those times, so I never worried about seizures happening for other people (like on one of our occasional date nights or at Church).  The fact that it happened in the middle of the day has me worried.  Please pray that this trend does not continue!

Thanks for those of you who were praying for my sweet girl and who texted to check in on her.  We really appreciate it!


 

A clean bill of health

Yesterday Madi had a ct scan and shunt series (x-ray series) to check her ventricle size and shunt positioning.  I HATE taking her in for these because she cries non-stop and it makes my heart so sad for her.  Usually the singing and games don't help, and I never leave her side, but she still cries.  I want to pick her up and run away, but of course, that is not a good plan.  This time, though, we had a great tech who was slow and gentle with her, making sure to tell her all about his big "picture machine".  We played peek-a-boo in it and he did his job quickly and well.  I think I saw one tear, but a round of "twinkle twinkle" and she was all better!  It was such an answer to prayer.  They gave her 2 stuffed animals (a fish and a bear) for being so brave during both of the procedures.  She was very, very proud of earning them.  She decided to give the fish to Conner, but held on to the bear the rest of the day.

Today we headed back to CRS to see Dr. Moss and go over the images.  They normally like to have you do both on the same day to save you a trip, but it just didn't work out this time around.  Madi wanted to show off walking for Dr. Moss and he got a kick out of seeing her hopping around.  Everything looks great, just the same as our last set in October.  This time we get to go a whole year without another scan, YEAH!

I remember about 2 1/2 years ago when we Madi's shunt was having so many problems.  At day 2, she had her first shunt put in.  It was non-programmable and on her right hand side.  Things were looking good so we got to go home after 5 days in the hospital (it was a little longer since they closed up her back too).  Less than two weeks later, though, we found out she had an infection and we were back.  That stay was almost 3 weeks.  During that time they pulled the shunt out of the right side, put in an external drain, changed that out for a new external drain, and put in a new VP shunt on her left side, this time programmable.  We thought we were in the clear until a few weeks later she started acting weird again.  We took her back and, sure enough, her shunt was clogged.  We got lucky and were only in about 3 or 4 days that time around.  A few weeks later, we were back, because we thought it failed again.  The doctor tested it and said it wasn't working.  We scheduled surgery for the next morning.  The next morning came, though, and it was working again!  Praise God, no more surgeries!!!  We left and have not been back since!  I remember feeling so worried and scared, because we couldn't make it out of the hospital for more than a few weeks at a time.  Conner was not even 2 yet, and it was so hard being separated.  I am so thankful that Madi's shunt is working well now, and that we haven't been back for 2 years.  It has been amazing!!!  As crummy as those visits can be, though, I am so thankful we have them, because had Madi been born before the time that shunts were invented (in the 50's), she wouldn't be here with us today, and I cannot imagine life without her.  She is such an amazing little blessing!!