Enough said..... Seizure suck. Post Ictal rages are enough to make even the toughest dude crash...

Ictal

Before Ty had his big seizure he had been stuttering. It seemed to kind of come and go and I didn't know exactly what was going on. I made a comment to his pediatrician but we had come to the conclusion that it was not a true stutter and so we didn’t make a big deal out of it.

After his seizure it kind took a back burner to real life. Nothing made it worse, but it also didn’t get better either. Every once in a while we would notice it was gone and then it would come back full force.

After his “event” ( aka Our neurologist, that isn’t our neurologist any more, said that she isn’t convinced it was a seizure so we are calling it an event) in June and our EEG that was not awesome we got a second ( before the first) opinion. Dr. Bernes was great. Agreed that we should proceed and figure out what was going on. Get a look at his brain and see where to go from there and what was going on.

Fast forward to the EEG this past week.

We checked in on Tuesday. We were asked to do all we could to just get him to talk to us. I read 35 books. Played a million and one games with him and did all I could to have his stuttering caught on tape. When we were finally able to settle in for the night after a hard game of throw the snacks and dance party, and get some sleep.

Wednesday the Doc on call came in and said that Ty was having interictal activity in his brain. Basically 65 percent of his night is spent in seizure “ interictal” activity. It is effecting his speech. It COULD be effecting his cognitive development but they don’t know. But they need to see if they can get his activity in the night down, but in order to do that they need to sedate him. Like heavily sedate him. Like stick in an IV in case the meds cause respiratory distress, sedation. I was a mess. I am pretty sure that I called Dallas sobbing a few times. And I might or might not have yelled at the poor handsome, skinny pants wearing student. I might or might not have said bad words when the door was shut only to remember they were filming EVERY THING WE DID...And we might or might not have made jokes about bums and crap a few times too. But the tears.. holy CRAP.

I tried to explain to Tyler about an IV. So the nurse sent in the child life specialist and Ty just kind of looked at her.  She was talking to me and asked me if I had a degree or worked with kids because I was really “good” with him. I thought,”um he is an extension of me! Of Course we are good together” But I explained I did have a degree and that it was in child life specialties. She said well you have it covered and left. I was a bit stunned.

The IV class didn’t do much for him. He was one pissed off dude. They missed the first one and got the next one. When we got the meds in him he asked if he could GET OUT OF BED. After 3 stories, me laying with him and then finally telling him he was all done and holding his face, he fell asleep. He was OUT.

I got ready for bed pretty fast after that and was out pretty quick as well but when half the floor comes in because your son is taking off his IV in his sleep AND his oxygen was low low. He was fine and asleep and his mom... she was having a panic attack.

The next morning we got ready to pack our bag. They said no matter what we could go home but it was going to depend WHAT we went home with.

The sedation worked and Ty is now home on a large dose of valium. It has decreased his interictal activity to 35 percent of the night. We have seen a huge improvement.

The downfall:

HE IS AGGRESSIVE. He is calming down a little but he is tired so his sensory processing is far and above what we really are use to. Grayson is dealing with us having to have him passed around and so he lashes out. We are hoping we can get back to a new normal SOON!

Neurology

We are now adding another specialist to our already long list of FUN. Neurology fast track got us in today. We spent the entire afternoon in the nasty Clinic B of Primary Children's medical center today. We got there at 1:30 for our appointment at 2. They got us to the weight and check in pretty quickly. We waited about a total of 25 minutes to be seen. ( Sadly, that is REALLY good for a specialist!) The appointment went about 2 hours.

We were seen by the Nurse Practitioner and then the attending neurologist. We will see Dr. Lloyd for a follow up in a few months. The consensus is that Ty had a seizure because of the virus that he had BUT that doesn't mean he will or won't have another. He is considered at risk because of his brain damage. He is high risk when you add his shunt.

They are thinking his seizure is called a complex partial seizure. His eyes deviated to one side ( all by observation so not always the best or most accurate. Just what we can recall) They can affect the whole body as his was but they start in one part of the brain.

We talked about things we had seen before in his behavior. Some of the stuff we noticed was an increase in his anxiety. His teachers even noted that one. She said he had gotten much more angry and agitated at some behaviors the last few days at school. He had also started stuttering several weeks ago. Like VERY bad stuttering. It was making him angry and upset. It was frustrating to listen to.

His anxiety seems to go hand in hand with his sensory stuff. He has a one track mind. Like OCD. Once he gets and idea in his mind that is what he wants to do and he will talk about it till you do it.

She said that a lot of his behaviors are just sensory issues. She noted the sensory stuff he has with his mouth and head and asked if we would like to opt no thank you to the EEG. The reasons she gave was that it is only going to tell us that he MIGHT with a 70 percent chance MIGHT have another. Versus just medicate and have a 60 percent change MIGHT and then we can play with medication.

The NP was amazing with Tyler. He kept chasing after her to tell her stuff. He invited her to go to the big construction job with him. He asked her to play ball with him. Normal Tyler stuff. She said she didn't have the heart to put probes on his head for an EEG. She said she wanted to treat the patient. To listen to the mom. To listen to the kid. And that our kid was screaming don't touch my head. So we won't touch his head. And go the easy route.

We now have to carry a seizure kit with us. It is like a epi pen for your brain... and it goes in your bum. HMMM weird. It is suppose to stop any seizure that goes on for more than 5 minutes. In which you call the 911 team and administer these awesome meds. If he goes over 5 minutes and it stops with the meds we don't have to call the ambulance if we feel comfortable. Our hope is to NEVER see one again.

Overall I think it went great. We need to stay away from germs for a while. We need to keep him as healthy as we can for a bit to make sure they stay away. His poor brain and body compensate for so much that when he finally can't, he gets super sick.

I do have to say, the more people that meet his cute face the more that we realize just how amazing he is. We love him.

YOUR Team- In the NICU and beyond!

For many preemies a stay in the NICU is inevitable. The NICU is such a different place. I recommend to any pregnant women to sign up and take a tour of the NICU. If you find yourself there it is a VERY scary and overwhelming.

I had never been in a NICU. I don't know how I survived it. The only thing that kept me going was knowing on the other side of those locked doors was a little guy that I wanted to touch and love and hold.

The NICU is such an emotional roller coaster. Some days are UP UP and others are DOWN DOWN. Sometimes it wasn't even days. Sometimes it was hour and even minutes that the emotions change.

The NICU is different for everyone. Depending on the complications that your baby experiences and how long you are there is a big indicator of the roller coaster you experience. For us our roller coaster hasn't stopped but we were able to move onto a different ride when we left the NICU.

You have a HUGE team of doctors that you have to really feel that you can trust. When we first got to the NICU I didn't know if I could trust the set of docs we had. We quickly found ourselves some nurses that were our Primary nurses. Barb, Gerald and Brandon were our "team" of nurses. We chose them to be our primary nurses. They were SOOO good with Tyler. Tyler did so well with the boys. Brandon would read baseball magazines to him. I trusted my child with these people. I knew Barb would tell me if things were not looking good and Gerald became the Charge nurse and he really pushed for us to be able to hold Tyler.

As Tyler got sicker and the need for him to be moved AGAIN Gerald really got the ball going and he prepared us to get our kid to the next level. He also made it possible 3 weeks after Ty was born to hold him. BOTH of us. It was amazing and sad experience. In my mind, bonding with my child was suppose to happen instantly. Instead that skin to skin contact was with held.

When we moved to PCMC I was sick. I was so sick because we had a new team of doctors. We were put on team A or team B and the would pick where he is according to how sick he was. We knew we needed brain surgery so we knew it would be a long haul and we would need to trust our team.

This is when we met Marissa. Marissa is still Tyler's doctor. There is NOTHING that I can say that will give this doctor the praise she deserves. I became even closer with Marissa the first time she called at 4 am to tell me that something was really wrong.

After that morning call I relied ( and still do) rely on this doctor. She has NEVER been dishonest with me. She has always told me the truth. She has ALWAYS listened to me and has never pushed me away.

Her phone call to me was to let me know that after Ty had his brain surgery he had a seizure. It was a bad one. She said it was a few minutes long and she had to give him the max meds for him to be under control. She stayed on the phone with me while I sobbed and sobbed. I got up and pumped and headed up to the NICU as soon as I could. Marissa was called while we were there and she talked with us over our extremely snowed baby.

She was my solid solid arm in the NICU and after the NICU. Between her and Dr. Duffy and Nurse Jen I survived my motherhood so far.

Our team of docs while in the NICU were all VERY smart and very busy. But they made OUR team. Tyler still has many of these doctors today.

In the NICU you also have to find people you trust to be your nurses. One day while we were just getting the swing of how PCMC is working etc we met a nurse. A nurse that I really liked. And that I thought I knew from some where. Sure enough, we were neighbors in college. We asked her to be our primary nurse, we had Chris at night and Jennica and then who ever. We were there enough we knew pretty much everyone.

Our team of docs were there to work as a team and the end result was to get the best Tyler that we could, send him home and love him and his team at home would continue to love and help him grow.

Our Main team of docs now are the team that I trust. Its the team of Doctors that have transitioned us from the NICU to now

Dr. Walker- the very BEST neurosurgeon in the valley ( in my opinion) This man has listened to my mommy gut more than once and has gone above and beyond and has cut a vacation short to talk to a mom whith a hunch. He called when that shunt he put in was recalled. This man is my hero!

Dr. Nagle- Marrissa is seriously my HERO. I can call her and she can hear the panic in my voice and she can defuse the momminess in me and get me to listen LOGICALLY. Marissa is one of the only people who have gotten me through four years of preemiehood. Even though I moved I called Marissa a few times. She is willing to try ANYTHING for Tyler. She is the best thing that I could give to my son. A doctor who loves him and adores him.

Dr. Larsen- Originally this doc was Dr. Dries. But I really needed a doc that would work with my child not tell me he was blind. He isn't blind. Dr. Larsen did that. He was listening. He got us started on the path we are on now.

Dr. Gooch- She is Tyler's rehab doc and she is working at getting us a little more mobile and getting us back to where we need to be. We are very thankful for her.

Dr. Carrol- She is working with Dr. Gooch to help with the orthopedic problems that Tyler is having. She is doing all she can to avoid surgery and fix him up the best we can.

We will be seeing a neurologist here and also a sleep doctor. That makes up Tyler's whole team of docs. We have therapists that are included in our plan of action. But the most important part of the whole team is Tyler

All of these docs have one thing in common from the NICU to now. TYLER.

As a new mom embarking on this journey, take recommendations from your friends but know that in the end YOU chose what is best for your baby.

Find the best team that works for you!

Spring Break

I was not ever sure why some parents hated breaks from school. Honestly, i fugured being home with me was pretty cool. Then I becaame a parent. It is no that I don't love my child but seriously he needs school. He needs the interaction. He gets bored at home. I am boring.

The first part of spring break was pretty rough. I was sick, and then was waiting for the rest of the family to get it. I lucked out ( thanks to all those who prayed that we would not be struck with the pukes) and only i was stricken.

I spent the next part of spring break watching Tyler be just a little bit off. I spent the time worrying and worrying and finally getting him in for a med change at night. The last few nights have been much better. His sleeping meds have been uped and he seems to be out much better. I almost feel like I have my child back.

Tommorrow starts school again. I have his book bag all ready and we are purchasing our first package of school portraits for Tyler and are sending him back to school. He is in resting and seems to be ok with going to school.

I also spent the week doing some crafts. It seems that it is some what therapeutic for me.

Here are the pictures:
I made these for his room. They match his new bed spread and I want to start doing a little personalizing for him. He deserves it. I am not sure how to put these in his room. They are 2 different sizes to see what works best.
One of the things I am looking for to do his room is a natural tone bookcase and then also a woodtoy box. Either for the living room or for his room.

Any suggesetion on where to find one? Any suggestions on how to hang these cute little letters?

Hobby Lobby

I am feeling a little better after my emotional night. Ty is not sleeping well so that makes it a long night. I called this morning to see if his neurologist could up his meds since he is growing. I called knowing that a visit would be a month or so out. Well... it is tomorrow. I guess at some point there is a breaking point to what we can handle. I am so glad to be able to take him in and fix those meds.

Oh, and I went to Hobby Lobby. No, not once but 2 times. It made me feel better. I will have to display my stuff. One of them is alphabet set for Ty that I am painting. I like doing stuff like this..


Hobby Lobby makes me feel better.

The Roller Coaster Ride!

Often when you hear people starting out on a new journey they describe it as a roller coaster of emotions. I have found that to be particularly true with a medical journey. I know for us the NICU was suhc a ride. There were days when it was good and then dip almost instantly and usually without warning.

After getting through some pretty steep dips and gone on to that straight and cruising stage where it is calm and you can see the ups and downs and turns ahead I find myself having to gear up for the up just to know that with the up comes that violent SHOVE into down.

I had to look up to the hill and gear up for "the worst" so I could be prepared for anything at the " doctor who can't be named." I have come to find that he wasn't scary. Our NEUROLOGIST( yep I can say it.. see...) was wonderful and the appointment went great. It was such a breathe of fresh air to feel like someone had some kind of clue what was going on with Tyler and that it wasn't this devastating news that I had to gear myself up for. In fact quite the opposite.

In preparing for this appointment I had to face the fact that Tyler just might have CP. That he " might" have to be labeled something that I had been trying to avoid. I had heard the words once from a doc and was flabergasted given that he didn't even touch Tyler to see that he bends and moves fine. Since that was a drop I didn't see I knew I would have to really gear up for this visit.

After our Neurosurgeon told me he thought Ty had CP we saw a orthopedic doc who then concluded our Neurosurgeon was wrong but the braces would be a good idea and then go from there. Our ped suggested yet again to go to a neurologist who specialized in stuff like CP and brain issues and since we still couldn't get him to sleep I reluctantly agreed. Here is where the gearing up goes. I talked to moms who had gone to this Doc and a neurologist in general. All had the same story so I had to start preparing myself for the worst. And the worst I did....

So as the day approached I got more and more anxious and more and more nervous. I didn't want to go alone. I didn't want to hear "those words" alone. I didn't want to have to tell Dallas and then have him tell me that it isn't what is wrong. I didn't want to hear seizures, I didn't want to hear CP I didn't want to be in THAT office. So I had asked Dallas to go with me. I had to have someone else there.

The appointment was at Pheonix Children's (PCH) and I had never been there which compounded my anxiety. It was early in the morning ( another concern with my work not getting out till 2 am) The appointment was at 8 am. That left me with very little sleep along with the emotions that I was allready feelings.

So here is how the day went: Dallas went with me, and we got there early. The traffic was really good and the carpool lane had no problems at all. We were the first appointment of the day and got right in. Met the doc ( whom I thought was absolutely fabulous) and I didn't hear any scary words. In fact, quite the opposite. Ty is doing very well. While we were doing his history that consisted of preemie, brain bleeds, blah blah... the Wow's got bigger and he was even more impressed. As Ty got more and more comfortable he started standing and taking steps and playing. He even tried to open the door. That is when the words CP and I don't think so came out. I almost started to cry. I wanted him to call my Horrible neurosurgeon and tell him what I thought. I knew deep inside that he was ok. That he was going to be ok but I had heard so many conflicting things.

The conclusion: He feels that Ty is having reflux. Severe reflux or more severe than we had originally thought OR had even thought to have tested. We will be going to see a GI doc and have that tested. If reflux is not the cause we will do an EEG to rule out seizure like activity. NOT SEIZURES just activity in his brain that doesn't tell him he is asleep. He said it shows up as activity but is not harmful like seizures are. That is why it is LIKE seizures. We would treat it exactly as we are treating him now.

What a flood of emotions. I was so glad Dallas was there. I was so glad that the idea that he was not "ok" was wrong. I am glad I had looked ahead for the downward thrust. I was glad it wasn't as steep as it was first anticipated.

What a ride and I got back on my even plane where I can look up ahead and see the up and the downs. I am glad that I can miscalculate. This part of the rollercoaster left me tired, emotionally spent and ready for a really nice day off. A day that I can spend it with my baby and with Dallas. They sure make the ride a little more bareable.