Monday, December 12th:
We got up early and the three of us headed to the OSF St Francis in Peoria for Theo's three month ultrasound and check up with St Judes. The ultrasound was quick and easy and then we went to see Dr Libes. She did a physical examination of Theo and then we filled her in on what has been going on over the last three months. She then informed us that she was moving away, but we will be in good hands with the other doctors. We've been seeing her (almost) every three months since January 2020. She's been so kind and professional and she will be missed.
After we got home I received a call from Dr Libes. She informed us that the doctor that reviews the ultrasound noticed a nodule on the liver. The report states: "The liver is normal in size and echogenicity. There is a hepatopedal vascular flow in the portal vein. A 1.0 x 0.7 x 0.5 cm hyperechoic nodule is seen within the posterior aspect of the right hepatic lobe." He goes on to check the other organs, which all appear to be "unremarkable." The Dr then concludes, "Interval hyperechoic nodule within the right hepatic lobe, possibly due to a hemangioma. An interval follow-up abdominal ultrasound is recommended in 3 months for further surveillance."
So, in non-doctor talk, this means that there is normal blood flow to the liver and a liver lesion (most likely benign) was observed. Hepatic hemangiomas (aka hepatic venous malformations) are the most common benign vascular liver lesions.
Dr Libes informed me that they are not too concerned and she also recommends a followup in three months (which is what we do anyways).
Later, I received a call from another one of Oncologist from St Judes. She just wanted to make sure I didn't have any additional questions about Theo's ultrasound. She informed me that these vascular malformations can go away on their own or they don't cause any issues, so they usually leave them alone. She then asked me if Genetics was able to find anything to explain Theo's other vascular malformations (Remember that darn aneurysm and those beautiful Port Wine Stains? Those are both vascular malformations). I told her that nothing has been found yet. She said that the nodule is most likely a benign vascular malformation we don't need to get any additional bloodwork for Theo, BUT if we want to double check she can send in the orders to check for the cancer markers.
[Theo is warming up to his new friend Ricky]
Theo didn't have any seizures today.
The next morning, December 13th, we sent Theo off to school on the bus and Josh went to work.
Theo had a great day at school and only slept for a little bit. His aid told me that he was very alert and worked hard during his therapies (with minimal whining 😬).
Theo had three seizures today.
Wednesday, December 14th, started off pretty normal. I got Theo ready for school and put him on the bus. As I was getting my exercise clothes on I got a text from Ms. Jen, Theo's feeding and speech therapist, confirming our appointment and making sure we were healthy and had not had close contact to anyone with COVID. I texted her back that we were good to go, but then three minutes later I got a text from Theo's aid. She had tested positive for COVID (with mild symptoms). I called the school to see what I should do about Theo. The principal informed me that Theo could still come to school as long as he didn't have symptoms. BUT there are only two people in the school who are legally allowed to feed Theo and they are both out sick. Bummer. I told him that I can come pick Theo up and keep him home today. The principal told me that they will likely have someone tomorrow (from another school) who can come in and feed him.
That afternoon we Zoomed with Ms. Jen (to be on the safe side) and tested Theo for COVID (he was negative).
We set up a nice big swing for Theo and he seemed very confused about why there was a swing in our house. He loved it, but he also seemed a little concerned.
Theo had two seizures today.
The next morning, December 15th, I received a call from Theo's principal informing me that they found someone to feed Theo, but she only had time to do one feeding at 10:30 AM. I told him that was fine and I could come to the school at 1:00 PM to give Theo his meds and some water.
I've been in Theo's class a few times, but it's always fun to go see all the kids and what they are working on. Theo was a little shocked to see me at his school, but he was fine 🙂
[Snow!]
I thought this was very interesting:
Theo didn't have any seizures today.
On Friday (December 16th) morning I received a call from the principal. You know the sub nurse that fed Theo yesterday? Well, she's throwing up. Oh boy! Sooooo Theo was exposed to COVID and the flu (probably). Good times! He said Theo was still welcome to come to school, but I would have to come feed him at 11:00 AM and give him his meds and water at 1:00 PM. I can do that!
Josh was heading to Wisconsin for the weekend so I made him take a COVID test before he left. I don't want him to get anyone sick up there! Josh is going to visit his friend Lucas in northeastern Wisconsin for a couple days and then head over to Minnesota to see his dad and Julie and then he'll go see the rest of his family in Superior.
[Negative!]
After we got Theo on the bus I said goodbye to Josh and then went into the basement to run. About 20 minutes later I heard someone coming down the basement stairs. It was Josh! One of the belts on his Jeep broke and it wasn't drivable. He told Lucas and Lucas said Josh could borrow his girlfriends Jeep (she was staying in town for the weekend to get a few things done while Lucas went back to their house in WI)!
After a little juggling of people and items, Josh was able to borrow the Jeep and he headed north.
A couple hours later I went to Theo's school. Again, he seemed confused that I was there, but it was fine. When I showed up they were in the middle of making a "Christmas Cookie Dip!" The kids were all taking turns helping. It was adorable!
[Theo did't taste it because it had dairy]
After I fed Theo I headed to the grocery store to pick up a few things. It's a lot easier to take Theo places now that we have the van, but grocery shopping is still difficult. It gets a little complicated when I'm trying to push a grocery cart AND Theo's wheelchair at the same time.
At 1:00 PM I went back to Theo's school to give him some water and his meds. I then hung out in the parking lot in our van. I have plenty of podcast to listen to so I don't mind hanging out in the van while I'm waiting for Theo (I do it when he's in therapy too).
After school I took Theo home and Ms Cody came over for PT.
[All the gifts are ready!]
[Lakers are moving up! Only 4th from the bottom!]
Josh had to drive on some pretty rough roads, but he made it to Lucas' house without any problems.
[Guys night!]
Theo had one seizure today.
Over the weekend Theo and I stayed home and played while Josh hung out with Lucas in Wisconsin.
[Being super strong and playing the drums]
I managed to get Theo in his gazelle all by myself! I gave him some chocolate pudding while he played with his drums and sensory bin.
[He was hesitant at first, but he touched the bells a few times]
Even though Theo didn't have any symptoms I thought it would be a good idea to give him another COVID test. It was negative and he was mad at me for sticking that q-tip up his nose. Sorry kiddo!
Theo had two seizures on Saturday and one on Sunday.
No comments:
Post a Comment