2 months seizure free!

We haven't been incident free, I will get to that more later, but we have avoided a seizure at least.  Since the tube surgery, Austin has been feeling much better.  Two weeks ago a cold started going around the house.  It started with Noah, then Austin, now Adam.  Austin had his first post-op ear infection. It was so gross, it was oozing and bleeding out.  At least the tubes are doing their job, but I wasn't prepared for that.  We got some ear drops hoping it would cure the issue, however, he still was very cranky and having several BHS per day.  We had to return to the Dr a few days later to get a stronger antibiotic.  He seems to be doing MUCH better now, and the CDIFF symptoms have not returned.  Thank god.  He hasn't gained much weight lately, but given his condition it isn't surprising.  He is also getting like 8 teeth, which doesn't help.  We are also working on getting him to eat more food and less bottles.  Everything is a very slow process.  He still isn't walking yet, but likes to practice now and then for many bribes, like candy.

Surgery....

Austin had his tube surgery on Friday morning.  The morning started pretty early, we had to be at the hospital by 7 for check in.  He wasn't able to have any solids or milk after midnight and no clear liquids after 6am.  We got some apple juice in him until we left for the hospital.  The procedure was performed at the Children's hospital Denver, south campus.  My parents drove me over, while Noah and Daddy went to a movie.  I felt pretty good, and so did Austin for the first hour of the morning.  Around 8am he started getting pretty cranky, asking for a bottle and pulling at his ears.  In the days leading up to the surgery we suspected that he was getting another ear infection because he was really cranky unless on ear drops and Motrin.  While he was playing in the hospital crib he jumped and hit is chin on the side of the crib.  This triggered a pretty bad BHS.

This is him in his little surgery outfit.

We had what seemed like 10 people come in the room asking all kinds of questions about his condition.  They wanted to know what his seizure history has been, what kind of BHSs he has on a regular basis, they weighed him, measured him, etc.  He wasn't very thrilled and I was ready to get the show started.  Once we were all ready the Dr came to check in with us.  Since his normal Dr was not available today, we used the on call Dr that day which was Dr Friedman.  I hadn't met him, but he seemed nice enough.  He wasn't convinced that this surgery would help his condition, but could see the urgent need for it.  The nurse said that he had lots of fluid in his ears, so they would clean that out during surgery.  At 8:50 I was dressed in my not so cute outfit and I carried him to the OR.  They decided not to take out his adenoids, so he was just on general anesthesia.  They asked me to lay him down on the table.  When I put him down he was very angry and started to have a BHS.  At 8:59 they put the mask on his face, which caused him to go into a full BHS.  It was hard to see him struggling, when he finally took a breath in the anesthesia made his body convulse which I was sure was the start of a seizure.  They reassured me that this was normal and escorted me out of the room.  I went to change out of my outfit.  By the time I got back to the lobby I had time to call Adam, cry a little and then it was 9:08, and the DR was looking for me, to tell me that he was done!  The surgery went well although he was already on his way to another infection. The picture above are of the tubes they put in each ear. I was able to walk back to see him immediately, he was already awake drinking some water.  When he saw me he was very angry.  The nurse decided it was time for some Tylenol.  Once that kicked in, he was his happy little self.  We were on our way home by 10:00am, and that was it.  He had been a completely different baby ever since.  There are so many daily decisions we make as parents, I can say the decisions to give him surgery is the best one we have ever made.  He is now happy, he will play by himself, and acts like a normal happy child.  We received the best gift for Christmas, our happy baby boy.  I love seeing him grow, and explore his world on his own.  Now that we can actually put him down he loves to play, and he is so animated.  He has such a cute personality.  We have been BHS free since Friday, and you can tell that this is a new beginning for us as a family.  We are so much more relaxed and happy.  Lets hope we keep this good track record, and our little boy will flourish in his new environment.  All I want for him is health and happiness, I just love him so much.

Do his ears still hurt?

On Friday Austin had an awesome morning. He played by himself most of the morning which is a miracle. He took a great mid day nap, but then he woke from his nap very cranky. I tried Motrin and that seemed to help. The kids got home from school around 4. Abby and Austin were playing happily when Abby grabbed Austin's legs, a game he loves to play. His chin seemed to hit the floor, which put him into a full bad breath holding spell. He finally woke up still screaming. He was pulling at his ears so we decided to try ear drops even though he has been on meds for 7 days. Within 5 minutes he was happily playing again. I don't know what was bothering him if there isn't fluid or an infection, but at least the drops work. We still haven't gotten a call from the scheduler so I don't know when we will have the tubes surgery. I did cheat and leave 2 messages for her on Friday. If I don't hear from her on Monday I am tempted to go to the hospital and just start screaming "someone please fix my child!" tomorrow is our last day of meds, we will become a ticking time bomb at that point because it's not a question of if but of when. I just hope it's not on Christmas. Until Friday we had been BHS free for 5 days. Now the count is back down to 2.

A mother's insticts are always right

I knew it, my previous post from this morning was correct. I knew something in my gut was warning me that he was getting worse.  As I feared, Austin had his 3rd seizure today.
 5:15am - We hear Austin stirring for the day, this is his usual wake up time.  Adam and I debate who's day it was to get up with him.  Adam finally got up with him because I was still so sleepy from not sleeping well the night before.  Unfortunately my mind was going 100 miles per hour, so I wasn't able to go back to sleep.  I joined him and Austin downstairs for some coffee.  His mood seemed to be a little off and clingy, he needed all of daddy's attention.
7:00am - Austin had a bad breath holding spell.  He was climbing up the stairs in the kitchen and we heard a small thump.  I am not sure if it was him, or the ball he was playing with.  We laid him down on his side, to continue to episode.  This was a really bad one, I was really nervous.  He had a typical BHS and became very sleepy.  I decided to put him down for a nap to hopefully help his mood.  The kids came over, but Austin was still asleep.  I had the next door neighbor take the older kids to school.
8:45am - Austin wakes from his nap, in a pretty good mood but very testy.  I decided to keep this kids upstairs to try and pack for the trip, still not sure if we were still going. At this point Austin had had only 4-6ounces of formula and he really didn't want to eat.
9:15am - We were in Noah's room, the boys are happily playing and Austin starts to have another breath holding spell.  I am not sure what set this one off either, so I lay him down on his side to assume the normal position.
9:18am - Seizure. I pick him up after the BHS to comfort him and notice that he is starting to seize.  I take him downstairs because that is where we keep the Diastat.  Instructions say to wait 3 minutes before giving the Diastat.  I think this is how long I waited, but the next few minutes are a little confusing. 
9:20am - At this point I am trying to juggle a seizing baby, recording his siezure, calling my husband, getting ready to give the Diastat, call 911, and get my toddler out of the room and dressed.
9:21am - I call Adam while giving the Diastat, I was trying to keep my cool but at this point I was starting to get a little frazzled.
9:21am - Call 911.  I quickly figure out that while I am on the phone with 911 I should still be videoing his episode for the Dr.  So I go to find my camera, luckily it was out for the trip.
While all of this is going on I am trying to convince Noah to go and get dressed.  Noah likes to run around in his underwear, but I couldn't have him running out to see the firetruck naked!  So I am still trying to calm Austin, record the event, talk to 911, and get Noah dressed. 
9:25am - I call Adam again, the seizure had started to subside.  I also call my mom to come help with Noah (who still needs to get dressed!)
9:27am - The paramedics arrive and my next door neighbor.  Mandy (the neighbor) takes Noah out of the room.  At this point he was still ticking but the seizure was over. They took his stats, all normal but he was completely out of it.  They took his sugar which was pretty low (60).
10:00am - We decide to take him to the South campus Children's hospital.  This isn't normal protocol but they decided it was worth it.  I told them that if they didn't take him there, I would drive him there myself.  I get my stuff gather, and we take off non emergent.

They let me ride in the back with him, strapped down to the gurney I am holding him.  The drive is around 30minutes.  We get into a room right away.  The poor little guy was pooped, so he fell asleep on me for a while.  We repeat our story to several different people, before seeing the Dr.   The Dr then gets the story and watches the many videos I had taken of his episodes.

My guess was an ear infection, considering his mood and everything that had been going on this week, but no fever.
She checks his right ear, but it has too much ear wax in the way, she needs to clean it.  This really pissed him off, poor baby.  Then my suspicions were right, he has a very bad ear infection in the right ear.  She didn't even bother to check the other ear.  They decide to change his meds to a stronger antibiotic, refill our Diastat and give us more numbing ear drops (a life saver drug).

We leave to get something to eat, after a good nap at the ER, Austin is his happy sweet loving self.  He is dancing, eating, singing, and ready to go!

So here I am, feeling better than I listened to my gut.  I knew something was off and I knew it was his ears.  I knew this since Monday.  It just needed to get bad enough for someone to listen to me.  Sometimes I feel like I am the one with the medical degree, I just need a prescription pad.  Lesson learned.

Hopefully we will have a very happy boy for the next 10 days and we can get some real answers from ENT next week!

This is a happy baby.

We have decided that it is now safe to leave for Pagosa tomorrow.  I have all the nearest hospitals on the route mapped, now we just need to relax and have a little fun.  The case of wine I just bought will ensure that ;)

What a crazy day!

BHS at the Grocery store :(

Austin had a real BHS at the grocery store this morning.  He was sitting in the cart, pretty happy, although he wanted for me to hold him.  I kept telling him no, we are almost done.  All of a sudden he became pretty angry, so I picked him up hoping he would get himself out of a BHS.  He proceeded into a full spell.  I had to hold him on his side, like a baby.  I wanted to hide his face so on looking shoppers couldn't see his blue face.  He held his breath long enough to arch his back and kick his legs.  He then passed out.  When he woke up, he was pretty out of it and still upset.  He then threw up all over the front of my shirt. On the way to the store he had slammed a bottle in the car, so I think he had a little stomach pain, upset or gas, which is what set off the sudden spell.  It seems that they have a trend of always being followed by pain, whether it is his ears, stomach, or some sort of inflicted pain.  We had to leave immediately, luckily we were almost done.  He had another spell at the grocery store last week, but someone was watching and the lady came over very freaked out.  She wanted to call 911, which I can understand her concern.  A baby turning blue, can be disturbing.  Luckily I convinced her to wait it out and that he would be okay.  It looks like I will be making my future trips to the store alone!

Austin was so fussy after his nap today that I decided to take him in to get his ears double checked. I thought maybe an infection because when I gave him some ear numbing drops his mood greatly improved. He even wanted to eat! The Dr said that there was not an infection, however, his ears were a little concave, which can cause pressure. So we are still on track to see ENT on the 15th. He weighed, 18lbs 2oz. A 2% increase from last week!

Tomorrow is the Echo Cardiogram and the Cardiologist.  It will be nice to get that appointment out of the way.