UPDATE 2/7/16: Hey everyone, it's me! Thane and I got to go home today, which was a surprise! Thane is doing SO well now and I know that his surgery greatly improved his health. He can breathe, he's not noisy when he breathes, and he's just comfortable and happy. No sign of any seizure activity since February 1st! He is still learning to drink from the bottle again, but he's getting better at it. We have to thicken his formula to make it slower so he doesn't choke. Also, he's 2-months old today and started SMILING early this morning!! I just want to thank you all for the thoughts, prayers and for sharing my journal. I'll do my best to respond to all of my messages from here on out, but I'm home so you can send me notes if you need to reach me. It'll take me a couple days to recover and get used to everything at home again (Thane and I were gone for 1 1/2 weeks). And you gotta see his CUTE smile!
UPDATE 2/5/16: This week has been very busy, but we do have some good news to share! Last time I posted was on Monday and a TON has happened since then.
First and foremost, I just wanted to thank you all SO much for your concern and for sharing this journal. I know that the prayers have helped so much and some people from here on dA have donated to the GoFundMe that my Mom set up on Thane’s behalf. You have NO idea how much this helps us especially since we still don’t know when Thane will get to go home! From the bottom of my heart, truly, I am so thankful for you guys
Starting with Tuesday, the Doctors repeated a blood test from the day before because the original test had them scratching their heads. For some reason, the CO2 in Thane’s blood was super high, while the PH was low. His oxygen levels looked good, but the CO2 was weird. So when they did the test and it came back the same way, they wanted to look into it more. Thane’s breathing had been getting worse and they thought maybe he aspirated on his formula, so they did a chest x-ray. They found that his pulmonary arteries looked a little enlarged and thought maybe the lower right ventricle of his heart was enlarged. They decided to order an Echo-Ultrasound of his heart, which was scheduled for Wednesday. In the meantime a speech-therapist came to observe his feeding and swallowing skills. This lady wasn’t impressed and thought that he was aspirating. She also noticed that his loud breathing wasn’t coming from the chest, but from his throat, so they asked an ENT (Ear, Nose & Throat specialist) to come take a look. This guy comes in with a mobile machine with a computer and other equipment, puts the scope with the camera on its end through Thane’s nose and at first sight of the throat, says “Oh look, Laryngomalacia! No question about it!” I of course had no idea what that meant, but he explained to me that basically the area above his voice box is too soft and flappy, hindering his breathing and causing him to aspirate and choke on his formula whenever he’d eat.
So with this surprise diagnosis, it was clear that Thane needed surgery to correct the issue. The longer he goes with it, the more likely he could end up with Pneumonia. He’s always been a noisy breather, but I never thought much of it because we were so focused on the seizures, but now a lot of the problems make sense. He worked so hard to breathe and his oxygen looked good, but that’s why the CO2 in his blood was too high! They scheduled his surgery for Friday (today), but had to confirm by the Echo-Ultrasound that his heart was good. Of course, all went well with that (thank goodness!) and he was cleared for surgery. Overnight and through Thursday, he was on a feeding tube because it wasn’t safe for him to drink the bottle.
His surgery was today and it went SO well! He was able to breath better immediately and doesn’t make so much noise anymore (squeaking, snorting, etc). The next step is to make sure he can safely eat and they’re going to do a swallow study and observe his swallowing under X-ray to make sure everything is going down the right way.
Isn’t it amazing how much better he looks compared to the picture from earlier this week?? <33
He’s also had NO seizures since they gave him the Adovan on Monday and he’s so awake and alert! He’s never been this happy and I feel like we’ll finally be able to get to know him now that he’s not seizing all the time. He’ll still be in the hospital for at least a few more days it looks like. I don’t expect to be home too soon, maybe Thursday next week? We’ll see how he does during his recovery! We still don't have a diagnosis for the seizures, but they're going to do genetic testing. That will however take months to come back so we won't know for a long time why he's having seizures.
Anyway, I just wanted to make sure you were updated on everything! I had to work with my husband to get this update posted since dA is blocked. Just know that I’ve heard about all of your messages, my husband has read them to me, and when I’m home again I can respond to all of you. Thanks for being understanding!
Hey everyone, I strongly felt the need to update you all on my son’s condition. I wrote this journal and sent it to my husband so he could login to my account and post it for me. Unfortunately, dA is blocked at the hospital and I have no way to get online myself.
Thane’s condition has worsened since being admitted to the hospital. He’s at Primary Children’s Hospital in Utah, one of the best hospitals in the country! So far they have not been able to find any reason or diagnosis for his seizures. Each medication they’ve tried doesn’t work and he’s continued to have seizures of all kinds even despite the medication.
Originally they started him on Keppra 4 weeks ago. It worked for a week, but then the seizures came back. His neurologist increased the dose, thinking it would help, but over a few days even the increase didn’t make a difference. 2 weeks ago, he was readmitted to the local hospital for a few more days and they added Phenobarbital. This helped for about 4 days until the seizures returned again last week. On Wednesday, the neurologists from the first hospital, and Primary Children’s, agreed that we needed to bring him there and told us to drive an hour to that hospital to have him admitted.
Friday night was the most terrifying night I’ve ever experience with any of my children. His seizures were strong and not stopping, despite the new medicine they tried. They each clocked in at 2+ minutes long, when they originally were about 30 seconds each! At 7pm he started forcefully vomiting and couldn’t keep anything down, to the point that they had to give him fluids and his medication via IV! Through the night, after midnight and all Saturday, he had 17 seizures. So they put him on the EEG monitor to capture and watch his brainwaves to see where the seizures were coming from, and was hooked up for 24 hours. They did confirm that they’re real seizures, but found them to be peculiar because some were localized to one part of the brain, and the others were from all over the brain.
Yet, the MRI and CT scan showed nothing. There are physically no signs of anything that would cause this to happen. They’re looking at possible genetic or metabolic reasons for this, but any lab test to look at DNA will take weeks, if not a few months, to get back. Even then, if something comes back, it’ll only tell us the what, but not how to fix it. So we’re forced to try different medications until we find something that works.
Yesterday he seemed to improve a little bit and didn’t have as many seizures because of the new medication, Topamax, but today they’ve returned with full force. He had more than 10 seizures in a 2-hour period and they kept coming. They had to put him back on the EEG monitor to get more information about his brainwaves. He had so many seizures, physical and unseen, that they had no choice but to give him Adovan (technically a rescue-medication). Right now he’ll receive Adovan every 8 hours, then every 12, 18, and 24 hours. Each time frame he’ll have to receive 2-3 doses, so he will be in the hospital for a while and I don’t know when he’ll get to go home.
As I write this, the Adovan has made him so tired and groggy that he can’t open his eyes and he doesn’t have the coordination to suck on a bottle. I can get him to drink a little at a time, but he has to have IV fluids to stay hydrated until he can wake up more. They need the seizures to stop so his brain can rest! When there’s seizure activity, the brain can’t rest and recuperate, it can’t learn and develop. The main concern is his development and so we’re just trying to get the seizures to stop. Worst case scenario, they might consider putting him in a medically induced coma if the Adovan can’t stop it. L
Guys, I’m terrified. I honestly am. I’ve spent a lot of time in tears, and though I try to be positive, sometimes I’ve just had to let it all out and cry. And while I’m in the hospital with Thane, my husband CaterBug is staying home with Molly and Wendy. He’s had to miss work, and is trying to go to school at the same time. So much of everything is on his shoulders and it’s very stressful.
That’s where I’m asking for help. My Mom has started a Gofundme on behalf of our son, Thane. Any donation made will help us during this incredibly difficult time and I implore you, PLEASE share it and spread the word! Facebook, Deviantart, Twitter, Tumblr, whatever suits you best. If you can’t donate, sharing is good enough and will help us tremendously. Please keep praying for him!
Thank you SO much for reading, and thanks in advance for sharing!