Hi! Is this Courtney? Theo's mom? The nurse wanted me to call and tell you she called an ambulance for Theo.
Monday, March 21st, started relatively normal. Theo had PT. He usually has it on Wednesday and Fridays, but since he was having surgery on Friday, Ms. Becca came to see us on Monday.
March 21st is World Down Syndrome Day, so I put Theo in mismatched socks so we could celebrate and raise awareness our friends who have Down Syndrome.
After therapy, Theo took a nap and then I put him on the bus.
[Mismatched socks for Down Syndrome Awareness and a plaid shirt for "Plaid for Pennies"]
At 2:23 PM I saw that Theo's school was calling. I figured it was the nurse and I answered. It was the secretary. She told me that the nurse had called an ambulance for Theo and she didn't have any other information. I told her that I would be there in seven minutes.
On my way to the school I called Josh and told him what was going on and to meet me at the school.
When I pulled up to the school I saw two ambulances, a fire truck, and some kind of amphibious military vehicle! I pulled into the side parking lot and jumped out of the car. Theo's teacher, Mrs. DiLorenzo, met me at the side door and she looked like she had been crying. But she quickly assured me that everything was okay.
We entered the building and made the long walk to the nurses office. Mrs. DiLorenzo held my hand and I started to get choked up when I saw all the people (first responders and school staff) standing outside the nurses office.
I entered the nurses office and saw a very pale Theo laying on the examination table. His feet were elevated and he was very groggy. I said hi and he waved at me before pushing my hand away. I figured that was a good sign. I then asked the nurse and EMT what had happened.
The nurse said that he was in his stander playing in the classroom when he went very pale. His aid called down to the nurse and asked her what they should do. The nurse and aid wheeled Theo to the nurses office where they got him out of his stander and on the examination table. She said he then passed out and was unconscious, but breathing, for about 2 minutes. That's when they called the ambulance and myself.
I asked them if he was pushing or pooping while he was in the stander. They said they didn't think so. They told me that he had had a couple of seizures before he got pale, but they didn't happen RIGHT before he went pale.
I then asked the EMT what she wanted to do and she said she wanted to take him to the nearest ER. I told her that his hospital and doctors were all in Peoria (with a few in Ottawa). She said they had to take him to the nearest ER which was either Morris (to the west) or St Joe's (to the east). She suggested Morris because that way if we needed to be transferred to Peoria or Ottawa we would be closer. I said that was fine. I texted Josh the Morris Hospital address and told him to meet us there.
Theo was still very pale at this time and seemed very tired. The nurse and aid suggested changing his diaper before sending him off in the ambulance. I said that was a good idea and they changed his diaper while I collected his shoes, backpack, and wheelchair. They then informed me that he did poop and that it was possible he was pushing before he fainted.
The EMT asked me if I wanted to ride in the ambulance with Theo and I said I couldn't. I get motion sickness so easily. It would not be pretty. I felt awful telling them I couldn't ride in the ambulance, but then the principal, Dr. Miller said she could ride with him. I told them I would drive my car so I could bring Theo's wheelchair and his other things. They kept asking me if I was okay and if I needed someone to drive me. I told them I was fine and at that time I was. I was actually a little surprised how calm I was. I also called Neurology and told them what was going on. They said to definitely go to the nearest ER and to have the doctors their call the "after hours" Neurology doctor so they can chat.
They then wheeled Theo out of the nurses office and headed to the ambulance. They had him sitting up and he was getting some color back, so that's a good sign.
I headed to my car and pulled it around to the front of the school where the ambulance was. Dr. Miller came over to me and asked if she could have Theo's iPad because she knows how much he loves his music and Peek-a-Boo Barn. I love how much they care about my little boy!
[Dr. Miller outside the ambulance]
The EMT came over to me and told me that they were going to run through the red lights, so I could follow them as along as I didn't go though the red lights. I decided to just put the Morris Hospital in my GPS and I would meet them there.
They took off and I decided I needed to call someone during the 20 minute drive. I wanted to talk to someone who was level headed and would keep me calm. I called the most down to earth person I know, my little brother Luke. Once he answered the phone I immediately broke down. The whole situation all of a sudden became very real. He told me everything was going to be fine and that they would figure everything out.
The ambulance was driving fast down the freeway and I knew Josh was already at the hospital, so I drove the speed limit and kept talking to Luke. Thanks for chatting with me, Luke! I really appreciate it!
I arrived at the hospital and saw Josh standing outside the ER entrance. We went inside and talked to the front desk lady. She said that Theo was in a room and once he was settled in they would take us back. We only waited a few more minutes before Dr. Miller came out. She said that Theo was doing great and she showed one of the nurses how to use Peek-a-Boo Barn, so we knew Theo was in good hands!
We thanked her for taking care of Theo and for riding with him in the ambulance before heading back to see Theo in his room.
Other than being tired, Theo seemed fine and his color was looking good. I looked at his legs and saw that the lower half and his feet were covered in the same small red dots (petechiae) that I saw on his legs last week.
The ER doctor then came in and told us that they were going to do some bloodwork, hook Theo up to an IV, and get a quick CT scan. I told him it would be good to get the CT quickly since Theo was still pretty tired and he might actually hold still. They took him a few minutes later to get the scan done. I knew getting a CT at this hospital could be problematic because they don't know Theo and his very special brain.
The ER doctor then came back in and said that they could see that Theo's shunt was in the right place, but there was extra fluid in his ventricles. Josh and I looked at each other and nodded. We know. We suggested sending the scan to Peoria to have Theo's Neurology doctor (Dr. Sinha) and his Neurosurgeon (Dr. Lin) take a look at it. Theo just had a CT done a month ago so it would be easy for them to compare the two recent scans.
Over the next few hours there was a lot of back and forth between Peoria and our ER doctor. Because of HIPAA laws there are a lot of hoops to jump through in order to get private information sent between the two hospitals. We knew that either Neurology and Neurosurgery were going to clear us and we were going to go home OR they would see something in Theo's CT scan that they didn't like and we would be transferred to Peoria.
[Josh still had to work, but we are so grateful he was able to be there with us]
Our ER doctor was great! He would check up on us periodically and would fill us in on anything he found out. He also said it probably would have been faster for him to load the CT scan into is car and just drive it to Peoria himself! During our long wait, Theo was fine. He was very tired and just wanted to listen to his music. He ended up having 17 seizures that day, which was high, but I think a lot of it had to do with stress and being overstimulated at the ER. His vitals continued to look good and he was very hydrated from the IV.
After a couple more hours we heard our ER doctor get paged. A few minutes later he popped into our room to tell us that Neurology and Neurosurgery cleared us and we were free to go home. YAY! He then told us that if he wished he could leave us a five star rating for being such calm and patient parents. AND he thought we were pretty cool because of my Star Wars tattoo and Theo's Marvel g-tube button. Nerds are cool, guys!
Even though Morris Hospital didn't know us or Theo's complex history, we still had a great ER experience (that feels weird to say). This was our first ambulance ride and everyone was so kind and caring. I feel good knowing that if we have a situation again where we need to get Theo to the ER ASAP, we can come to Morris and they will take good care of us!
We left the ER at 7:00 PM and headed home. It was a LONG day and both Theo and I went to bed early!
The next morning, March 22nd, Theo and I headed to Thrive for OT. After I filled Ms. Laura in on all the excitement from the day before, I called Neurology. They had been in touch with the ER doctor yesterday, but I wanted to make sure they didn't have any additional questions. After a long chat with the Neurology nurse, she asked me if I needed anything else. I told her that I needed Dr. Sinha's blessing to move forward with Theo's ENT/Urology surgery on Friday. I told her that we were going to get Theo's COVID test and act like he was still getting surgery, BUT if they were not comfortable with him going under anesthesia then I was not comfortable either. The nurse also informed me that we are going to increase Theo's Keppra medication and hopefully that will help get these seizures under control.
After OT Theo and I drove to the OSF St Elizabeth in Ottawa for his pre-surgery COVID test. Theo was mad, of course, but he calmed down pretty fast. During the 40 minute drive home I received two messages on Theo's MyChart. The first one was from the hospital telling me that Theo's PCR COVID test came back negative. And the second message was from the ENT nurse telling me that the doctor would like to reschedule Theo's procedure "pending better control of his seizures." I get it. I totally do. It's a bummer, but it's fine.
[COVID test suck]
All the doctors agree that Theo fainted, BUT they don't know why. I think they assume it was seizure related and until that gets ruled out they don't want to move forward.
After we got home from the COVID test, I put Theo down for a nap and then made some more phone calls and went for a run on my treadmill. After Theo's nap the cleaning ladies showed up so we went to the mall to meet up with Josh and go for a walk.
I also spoke to the school nurse who filled me in more on what happened on Monday and she voiced her concern about Theo's legs turning bright red before he passed out. She was concerned that it was a circulatory or cardiovascular issue. I told her I would talk to his Pediatrician and see what they thought.
The biggest killer of VOGM kids is heart failure. The aneurysm is so large that it can flood the heart with a lot of blood and the heart has to work overtime to keep the blood pumping. That's why I was recommended to Cardiology immediately after they found Theo's VOGM. He had an echocardiogram before he was born and he was followed closely by Cardiology until the aneurysm was closed off. Theo has never had heart issues, which is rare for a kid with VOGM. He has had 10 echocardiograms and EKG's and they have never seen anything to cause alarm.
Even with Theo's good history with his heart, I was still going to bring up the school nurses concerns to Theo's Pediatrician.
Theo had 12 seizures today.
Wednesday, March 23rd, was an easy day at home. I called Theo's Pediatrician and made an appointment for Thursday and then we had a Zoom with Theo's dietitian and feeding/speech therapist. I filled them in on everything and they also suggested asking the Pediatrician about Theo's heart and also to make sure his platelet count was good. I'll add it to the list! I love that I have so many experienced people that I can brainstorm with!
[Petechiae - the super tiny red dots]
[Baseline legs]
[Working hard with Elmo]
Theo had 15 seizures today.
On Thursday, March 24th, Theo and I headed down to Thrive for OT and then out to Ottawa for his appointment with the Pediatrician. We met with the APN, Pahroul, who we adore! We have seen her three times this month, so she is pretty up to date on all things Theo! I filled her in on what had happened on Monday and concerns people had with his heart. We talked about his past heart history and we agreed that she couldn't justify ordering ANOTHER echocardiogram or EKG because he's never had heart issues with the VOGM was open and the chances of him having issues now is slim to none. I also asked about the petechiae on his feet and legs and she checked his circulation, pulse, and blood pressure. Everything looked good! She then asked me if I knew what Vasovagal Syncope was. I said YES! I told her that that was what we suspected his "episodes" were before we knew they were seizures.
She said she felt very confident diagnosing Theo with Vasovagal Syncope. I asked her if there was a cure or something we can do to prevent this from happening again. She said that we need to be aware of the triggers (likely him pushing to poop) and if he gets pale to lay him down immediately. He's had three separate "going pale" incidents (February 14, 2022; March 17, 2022; and March 21st) while he was in his stander at school and in two of those incidents he had successfully pooped.
His new diagnosis makes sense and I hope moving forward we can avoid these kinds of scary situations.
Theo had 9 seizures today.
Friday, March 25th, was supposed to be Theo's ENT and Urology surgery. We ended up rescheduling it for July 14th. We are hoping that Theo's hip surgery will still happen and if it does he needs 11 weeks to heal. So, July is the earliest I felt comfortable with him going in for another procedure.
We had another easy day, but we had both Ms. Becca and Ms. Cody come and do PT with Theo. They seemed happy with Theo's diagnosis and are relieved that the doctors don't think he has a heart issue.
After Theo's nap we went grocery shopping. Being in the house all day is not good for me or Theo, BUT it's still cold outside so we have to go for walks inside 🙂
[Hail - it's springtime in Chicago!]
[I'm always looking for new dairy-free foods for Theo to try]
Theo LOVES being in his wheelchair and going "buh-bye" in the car, so it's a treat for him when we leave the house too.
Today was my niece Hayden's first birthday! Happy birthday, sweet girl!
Theo had eight seizures today.
Saturday and Sunday were easy days around here. Josh went to to Plant Parenthood and bought us some new plants and then we all went to Costco!
[Aloe]
[Snake Plant]
I LOVE THEM!
Saturday, March 26th, was Epilepsy Awareness Day. Theo was just diagnosed last month 💜💜
Theo had eight seizures on Saturday and seven on Sunday.
I finished the London Marathon:
[Seriously]
[Thanks Josh for hanging up our gifts from Lacey!]
Theo is on Spring Break next week and only has a few therapy appointments, so I hope we can take that time to really get his medications correct and get these seizures down to a manageable amount.
I believe this so so much!
