Monday, June 2, 2014

4th time's a charm?

Snoozing in the hospital waiting for a discharge!  How stinking cute
is he??
We are all really happy to be home under one roof again.  Luke had a nice day and is doing pretty well.  He's still unsteady but we expect that. 
The great news is that we were able to meet today with Luke's new doctor,  Dr. Weisenberg. She is very direct and a great listener.  We were concerned about increasing one of Luke's medications because the current medications are clearly not working.  She agreed and we are immediately going back down to our regular dose.  We started his new drug,  Onfi, tonight.  The scary thing about it (well some of the scary things!) is that some of the side effects were things we typically watch for as pre signs of seizures - clumsiness, extreme drowsiness, that makes it even trickier to determine if he is having seizures or about to start having seizures. 
One of the reasons that provoked my hate post yesterday was the way his seizure presented Saturday night.  My mom was watching the boys while Dan and I ran down the street to grab a drink.  I told Grandma 'Ancy (both boys drop the 'n' in Nancy!) that she shouldn't talk to them because they'll both talk as long as she'll let them.  Luckily in true Grandma fashion, she ignored me and was having a good old time talking to the boys.  Ben - who was NOT tired - fell asleep pretty quickly.  Luke was pretty chatty, though, and she and Luke were having a fun little conversation.  As she was talking, she realized he had stopped responding.  She looked at him and noticed his eyes were deviated and he wasn't returning conversation. She immediately called us and we were home within 5 minutes.  As soon as we saw him, we knew he was indeed having a seizure.  We were able to administer the emergency drug while calling 911. 
On a normal night, it would have been me in bed with the boys.  I sleep with Luke every night while Dan watches the monitor.  When I put them in bed, I usually read a book on my phone or Kindle and remind them to be quiet so that they will fall asleep.  If it would have been me in there - I have no idea how long it would have/could have taken for me to notice he was having a seizure!  He never threw up after that seizure which is how we find out a lot of times he is having a seizure.  As he is seizing, Luke's blood oxygen starts to deplete.  It usually takes a little while but either the seizure or his head position begins to compromise his blood oxygen.  We have always counted on him throwing up during his nighttime seizures to alert us to a problem.  So we were even more anxious to bring him home because nighttime is a scary time in our household.
He was hooked up to the pulse ox machine during the night because he went into a second round of seizures and his O2 levels were dropping.  I mentioned to the nurse that I wished we could have something like that at home and she said a lot of epilepsy families use them.  I've looked for nighttime devices before but they are mostly for seizures with movement involved - Luke has ZERO movement.  Zero.  Anyway - long, long story with discussion back and forth - but Dr. Weisenberg sees how something like that could bring us some peace of mind and is going to have her nurse start looking into how we could get one to use while he's sleeping.  Truthfully, if we got one it would only really detect a seizure if he's been in it for awhile because it usually takes awhile for his O2 levels to drop.  But at least it would be able to tell us that his breathing was reaching dangerous levels.  It's better than what we have now - which is nothing! 
So all in an all...Dr. Weisenberg is a hit.  AND even better - we're still seeing Dr. Smyser in 6 months to check in, too.  Best of both worlds! Yay! 
Fingers crossed that the saying '3rd time's a charm' is inaccurate and they really meant '4th time's a charm!'  Go Onfi!! 
Attempted selfie with my other little monkey who I was excited
to see....this is why I don't take selfies.  Well, one of the reasons. 
I took 3...this was the best one! 

Sunday, June 1, 2014

Alright seizures.  Can you please go away for good and leave my kid alone? Grrrrr!
We're back at Children's and hopefully we'll go home tomorrow.  We are increasing a medicine that's not working anyway and hopefully adding a new one tomorrow that will take our little 4 year old,  43 pound,  43 inch kiddo up to 3 anti-epileptic drugs. Awesome.  

I hate seizures.  I hate the medicines that aren't working.  I hate watching Luke cry as they poke him with needles and inflict pain to determine if he's having a seizure.  I hate watching him stumble and slur his words looking like he should look on his 21st birthday,  not at 4. I hate listening to the baby crying down the hall at the beginning of this journey.  I hate feeling like I'm always, always waiting for the worst to happen and it keeps happening.  I hate that while I'm waiting,  I always feel like a crazy person.  I hate being a big fat whiner when there are other precious kids who have it so much worse.  I hate being away from Ben...again.  I hate that I'm still finding my voice and my strength to stand up for what I think is happening to or what is necessary for Luke. I hate missing the second to last day of school with my first graders and I hate that I'm not going to be with Luke on Tuesday so I can be with my first graders on their last day. I hate not knowing how he is feeling or if he is in pain.  I hate that I feel so much hate.  Whew. Thanks for letting me get that off my chest. 

I love,  though,  so much. I love our families and friends who are always willing to listen and pitch in. I love new friends who are helping to make sure Ben feels special.  I love my little boy who called the tech a booty butt (not deserved but I enjoyed the spunk!) and blew raspberries at her. I love the nurses and doctors who are trying their darnedest to help our family.  I love that we found out that we might be able to get a hospital pulse ox monitor because his oxygen levels drop during his seizures which might give us a little peace of mind at night.  I love my friend who is yet again going to make sure my classroom is up and running for the substitute tomorrow.  I love the texts and emails and support that always makes me feel like we're not in this alone. I love the friends I have made because of Luke's diagnosis.  I love my husband who is with me every step of the way. I love my boys who are going through life calling each other names and laughing and making arm pit farts. I love those things and so much more.  
Since Luke has been so unsteady lately we've been
holding his hand on the stairs.  Ben now insists that it is HIS
job to get Luke down safely. 

Hopefully we'll go home tomorrow. Hopefully we'll add a new medicine so I'll have renewed hope that this ugly stage is behind us. We'll meet our eptologist officially in a few weeks.  Let's all hope that the past seven months can be the past and our future doesn't keep going this way. 

Thanks for listening.  Love from SLCH..... again.