Detroit PET scan - Day 3

I'm surprised I remember most of this day, I am so tired. Last night was horrible. Dominic wasn't allowed to eat after 2:00am, so I woke him up to nurse him at 1:30. Probably not the best idea since he was in a dead sleep, but I knew if I didn't feed him, he would be starving later. But pretty much after that until 6:00 am he was inconsolable. He was crying and fussing no matter what I did. If I put him down, he screamed. He didn't want his thumb or a pacifier. He rocked him, I walked around with him. Nothing worked. The nurse finally gave him more Tylenol and he seemed to calm down a little. But then he proceeded to have 3 seizures in the following two hours. He finally fell asleep in Mamma's arms at 6:00.

Dominic and his Mamma

Just hanging out with Mom

A happier moment

Finally falling asleep in Mamma's arms

We were then discharged at 7:30 am and sent down to the PET center. He still had the electrodes on his head because they do another 30 min. EEG prior to the PET scan while they let the radioactive dye they inject circulate through his body. Yeah, that was weird too - being told your baby would be radioactive for the next 24 hours and to keep him away from other kids. That sounds safe! Anyway, after the 30 min. EEG they removed his cap and the electrodes and we realized why this poor baby had been so fussy. He must be allergic to the paste they use to stick the electrodes to his head, because he had 26 open sores and blisters all over his poor little head. Some of them were bleeding and some still had puffy blisters and some were just open sores. The poor, poor thing. No wonder he was in so much pain. I felt so awful for him. We got him cleaned up and he went in for the PET. They sedated him and the scan took about 25 minutes. After that, we waited until he woke up, shampooed his head and slathered him in Neosporin. They wanted to have the doctor check him out to make sure the blisters weren't a reaction to the radioactive dye, rather than just the paste. Finally, after he was checked out we were released. Now I just had an hour drive to my sister-in-laws and then another two hour drive home to look forward to.

Giving him the dye

Taking off the electrodes

Poor baby, all those blisters!

Going in for the PET

It doesn't look like it, but he's happy to go home

We're ready too!

Mitchell, Dominic and I finally arrived home around 3:30 and the rest of the night was mostly a blur, I was so tired. I had emailed Dr. Chugani asking when we would get the results and he promptly responded that his EEG was currently being reviewed and we'd get the PET results Friday. I'm pretty sure we went out to dinner so I didn't have to cook or clean. Then it was off to bed. I'm very happy to be home but I am anxious to find out what the next steps are. In the meantime, we'll try to relax, enjoy the weekend and catch up on sleep.

Detroit EEG - Day 2

Today was long, mostly because we've been confined to this small room for nearly 35 hours. Dominic has been super cranky. He was up all night having seizures and can't sleep during the day because half of the slats are missing from the window's vertical blinds. He does not want to be put down and I haven't nursed him this much since he was 2 months old! It seems to be the only way to calm him down. Although Mamma did rock him for awhile today to give me a break. Because he had so many seizures last night, they decided they had recorded enough seizure activity and wanted to put him back at his regular dose of meds this morning. They didn't want him to have any more seizures than necessary but still wanted to keep him hooked up to the EEG. So, we've spent the majority of our day reading, playing cards, playing with Dominic, feeding Dominic and eating. I've never looked so forward to my next meal before, simply because it was something to do. I think we're all ready to get outta here tomorrow. The PET scan is scheduled for 8:00 am, which means we'll get out of here around 10:00. Not too bad.

Cute boy

In his new "Hugh Hefner" robe from Mamma

Thinking he's hilarious

I was so anxious for so many weeks leading up to this, and now it's almost over and I'm at such peace right now. I still don't know what Dr. Chugani will have to say - he may want to wait awhile to have the surgery, he may think that because Dominic is still developing, the risks of surgery might outweigh the benefits. Or, they might find seizure activity on both sides of the brain, which would mean surgery would not be a solution. There are a lot of things he could say. But I know that whatever he says and whatever the next steps are, I am at peace. We are just praying now that the PET goes well tomorrow and that they would indeed locate the specific area where the seizures are coming from and that surgery would be the best solution. But in the end, it's all in God's hands.

Detroit EEG - Day 1

It's 1:35 am and we're all settled in here at Children's Hospital of Michigan. Dominic, my MIL, and I arrived here at 1:00. We're nice and cozy in this little room with only a couch for a bed and a recliner. Doesn't really matter though since we're not allowed to sleep. I was actually praying that Dominic would have some seizures tonight since he hadn't had any all morning or afternoon, despite being on only half of his normal dose of meds. I figured that would be my luck that we would spend 3 days here hooked up to an EEG and he wouldn't have any seizures. But, I was not disappointed. At 10:20 pm he had his first and he has pretty much had one about every 20 minutes since. They are much more intense than his usual ones. He projectile vomited during one of them. During his second one, it was getting close to 3 minutes and all these doctors and nurses came running in scrambling around to find his monitors and emergency meds. But, he's a little trickster and seems to come out of them on his own right around 2 1/2 - 3 minutes. You would think by now I would be used to this, but it never gets easier to watch your baby seize. Especially when all the doctors and nurses around him seem to be freaking out and getting the oxygen mask and IV meds ready and waiting by his bed. But, this is what we're here for.

Super Duper Trooper

I'm wide awake thanks to the latte my mother-in-law got me about two hours ago and am just sitting next to his crib, waiting for the next seizure. I think, because he has had so many seizures since 10:20, that they may go back up on his dose of meds. But we probably won't know until the morning. They also have to cath him to get a 24-hr urine collection (ordered by his nephrologist in regards to his kidney stones). I think tomorrow will be a long day with no sleep, but I am so, so, so grateful to have my mother-in-law here. She keeps a steady supply of water, snacks and coffee coming. She is amazing and has stayed awake with me the whole time. She's got her watch ready as soon as he has a seizure and times them for me. We played a few hands of 500 Rummy before the seizures started and I'm pretty sure she's going to make a midnight (or I guess early morning) Subway run for us :o) I don't know how I could have managed this without her. She rocks! But I'm pretty sure we'll both be zombies tomorrow. I'm planning on posting each day were here, simply because people keep asking how it's going and I don't want to have to retell everything over and over again. Plus, there really isn't anything else to do here. So, until tomorrow....

Starting at Goalie...

Dominic at Goalie

Dominic is looking more and more like a hockey goalie after this week. He finally got his helmet, along with his leg stabilizers. He's not a huge fan of either, but he's being a good sport about it. We're hoping he won't have to wear the helmet more than a few months. He only has to wear the leg stabilizers a few times a day and at therapy. He should be getting his arm stabilizer in the next couple weeks too. So pretty much he will be covered head to toe in orthoses with the exception of his left arm. The poor kid :o(

Dominic has also continued to have seizures, despite upping his meds. On Wednesday, I was on the phone with Neurology at midnight because he had had 8 seizures in two hours. He has been holding his breath and vomiting when he has seizures which has really started to freak us out. I barley sleep because I'm worried he'll choke on his vomit or stop breathing altogether. The nurse suggested I make sure I'm comfortable with infant CPR. No biggie, no reason to worry, right? I really, really hope it never gets so bad that I need to give my seizing baby CPR. Just another reason I'm anxious to get to Detroit and to get this process moving. Fortunately, we were very lucky that Dominic had a good couple days so Mike and I could get away for our anniversary for a night. We were nervous about leaving him overnight with my parents, not only because of the seizures, but also because of the stress of giving him 8 meds twice a day, the helmet, the SPIO vest etc. It's quite a bit of work looking after this little guy! But as it turned out, Dominic didn't have one seizure while we were gone, praise God! We definitely needed a night away. It was such a wonderful gift to be able to relax and enjoy time just the two of us, without the stress of our daily life.

Treadmill Training at PT

Working on Standing

Dominic, Mitchell and I are headed to Detroit Tuesday morning. Mike needs to stay home and work, so my wonderful sister-in-law is taking Mitchell for the three days we're in the hospital. And my mother-in-law, bless her heart, is going to stay with me in the hospital the entire time. I heard from Dr. Chugani on Friday and it sounds like we'll get the results from the VEEG and PET immediately. Depending on the results, he will review them and put together a surgical plan. There is still a part of me that worries that Dr. Chugani will say that surgery is not going to be an option. Even though he has definitely been diagnosed with Cortical Dysplasia and the seizures have always consistently been complex or simple partials, which indicates they come from only the left side. But I suppose there is always a chance that surgery would not fix the problem. But we continue to pray ferociously that surgery will be the cure to his epilepsy and heal him of the seizures. In the meantime, we are trying to get through each day with a smile on our faces.

Keep Moving Forward

A sitter!

Things are okay in the Dunlap house this week. We've had some good days and some bad days. Mike has been gone a lot the last week with various work outings which has been difficult for me. Dominic has been having a lot of seizures, which means not much sleep at night. I am not the same person when I only get 3 hours of sleep. I have to warn Mitchell that Mom is going to be crabby today. They upped Dominic's meds again, which seems like the only thing they can do when his seizures get worse until he has surgery. The date is set for July 5-7 for his 48-hour Video EEG in Detroit. Immediately following his discharge from EEG on the 7th he'll go to the PET center for his PET scan. I'm hoping that they get all the information they need and we can move the surgery process along. Dominic seems to make such great progress the few days he's seizure free. Then when they start up again, he's wiped out. Sunday he had 6 seizures in an hour and a half and Monday had 7 in two hours (of course at 2:30 am). So, they sort of set him back. I'm ready to be done with these seizures already! And then upping the meds makes him pretty tired for a few days as his body adjusts to the higher dose.

I have two teeth!

He finally got his SPIO (Stabilizing Pressure Input Orthosis) vest on Wednesday, so he's in that full time. We can already tell a difference. He is much sturdier and moves a lot more. He gets his helmet next week, along with his leg stabilizers. These are braces (or "magic shoes" as we call them) that he's worn during therapy. He doesn't put weight on his legs, so these help support him as he's learning to stand. He is going to start "treadmill training" next week. Should be interesting! My father says he's going to look like a hockey goalie when he has all his gear on!

In his sweet unitard (SPIO vest)

At PT in his "magic shoes"

This blog has been great for me, definitely a wonderful personal outlet. The past week has been really difficult for me. Between the seizures, lack of sleep, Mike being gone, three of my close friends moving away and Mitchell constantly using his underwear as the toilet - I thought I had hit my breaking point. Then I looked back at the post I just made last week about blessings. It's amazing how things can change so much in a week. And yet it has been so helpful to read posts like that when I'm having a rough week. Having faith is hard. You have to have just as strong a faith when things suck as you do when things are going well. In the midst of our sleepless nights and the tears we cry,  I have to remind myself they are God's mercies in disguise. Some days it's more of me repeating that to myself than actually feeling that way. But I know that God never gives us more than we can handle. He gives us the strength to get through each day, even if it's only by the skin of my teeth :o)

Blessings

I don't really anything new to post today regarding Dominic. He's doing pretty much the same. We're still waiting to see if the Zonegran helps with the seizures. Again, the hard part is that he has most at night and I usually only catch them when I'm checking on him or can sort of hear him on the monitor. So, he's probably having more than we know about. I'm anxious for the 48-hour EEG to know for sure. I also heard from Dr. Chugani and we are going to begin testing. His office is scheduling a PET scan and an extended EEG in which case he'll have to be weaned of all his meds first. I think they're going to try to schedule that pretty quick to get things going. I don't know how I feel about this. The best word I can use is 'anxious'. I'm anxious to get moving because if the surgery will control the seizures, the sooner the better. But at the same time, I'm extremely anxious and nervous about cutting out his brain. I want to make sure we have the absolute best surgeons. I'm anxious that he'll lose function since he has been making such great progress, despite the continued seizures. That would devastate me.

I'm just anxious in general. Which leads me to my next point. A dear friend of ours shared a song with us they heard in church yesterday and it just hit me. It's called "Blessings" by Laura Story. The lyrics are the cries of my heart and when I heard it, it felt like it had been written for us. While the song talks about suffering and hard times, what struck me the most is when she says "what if trials of this life are your mercies in disguise". So often I find myself asking God why we continue to have trials and suffering. Why he won't just end all of this and heal Dominic. But when I stop and look at Dominic, I see how many miracles God has done and that through these hard times we see His mercies and blessings. This song was just such a great reminder that through suffering God reveals himself more to us and uses those times to show us His unfailing love. Enjoy!




Blessings
By Laura Story

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know the pain reminds this heart
That this is not, this is not our home

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

Rockin' and a Rollin'

Not much has changed since last week except that Dominic is officially rolling over! He had been rolling occasionally when enticed by a toy at PT, but not consistently. He probably rolled on his own about 10-12 times today. I finally caught it on video, excuse the talking in the background. Sometimes I forget my camera has a microphone :o) The first video is an attempt, of which there were many. You can see what a stinker he is, as he sticks his tongue out at me. The second is him finally rolling. You can see how excited he gets (notice the leg kick)!





In other news, I have been emailing back and forth with Dr. Chugani about getting the surgery process started. Dominic has been on Zonegran for over a week and has had seizures the last three days. It can take a full two weeks to know whether or not it's working, but it's not a great sign that he's on 4 seizure meds and still having seizures. So, Dr. Chugani thinks it's best to start scheduling all the testing that needs to be done. I'm curious to see how long this process takes and wondering when he'll actually have surgery. I'm also looking into making a trip to the Cleveland Clinic or UCLA for a second opinion.

Last week we lowered his Triliptel and started him on Zantac and the vomiting has stopped, which is great news. We're sort of assuming that his low sodium levels were causing the vomiting, so lowering the Triliptel seems to have solved the problem. We have also started him on Zyrtec, as he has pretty bad allergies which have kept him up the past few nights. I keep wondering if I will ever sleep through the night again. Between Dominic up with seizures or allergies and Mitchell up having to go potty or having bad dreams (every night!), Mike and I never get much rest. But, what do they say? You can sleep when you're dead? Great, can't wait for that...