Surgery Recovery

 Theo is continuing to recovery from his hip surgery.

We have been working with chocolate hummus and Theo still seems to like it.

Theo was very happy to be on his side and we even got him on his stomach a few times.

I try to alternate Theo between his wheelchair, the Love Sack, and the floor every hour, so Theo isn't in the same position too long.

He's still a little weak, but he wanted to be "super strong!"

We have been working on getting Theo's legs to lay flat. His hamstrings and hips are still sore, but we are getting there.

We put up spikes over our front door to discourage birds from nesting there. There is a tiny gap in the spikes and the birds like to sit there and taunt me! We put up TWO bird houses! Go there please!

Working on some homework!

[Clapping]

Theo is having a hard time sleeping because he likes to sleep on his stomach or 3/4's prone. He was very happy to sleep on his stomach, but he wakes up every two hours and wants to change position. I think he is frustrated that he can't reposition himself.

[Best buds]

Theo was so proud of himself for being "super strong!"

Reading Theo Josh's favorite book!

On Tuesday, April 19th, I had a video call with Theo's Neurologist. He wanted to know how Theo was doing and how many seizures he was having. I told him he was still on Valium so he was only having 1-2 seizures a day. He was worried that Theo was STILL having seizures even though he was on a very strong anti-seizure medication. He decided to increase Theo's other medications and suggested that we wean Theo off of valium when he is ready. We started the wean and Theo was completely off of valium on Sunday, April 24th. On Monday, Tuesday, and Wednesday Theo only had one seizure each day. On Thursday he had two, Friday he had five, Saturday he had six, and Sunday (April 24th) he had 10.

We were also able to see PT, Ms. Becca and Ms. Cody, twice this week. And we did a Zoom call with Theo's dietitian, Ms. Jeannine. We will add in OT and Feeding/Speech therapy starting next week. 

I'm so grateful for our amazing team and hopefully Theo will continue to progress!

AND I want to thank Josh for being so patient with me and Theo. And for letting me go shopping by myself (Costco, Target, Jewel, and Walgreens) on Saturday!

Bilateral Proximal Femur Rotational Osteotomy and Bilateral Adductor, Hamstring, and Achilles Lengthening

We all got up early on Tuesday, April 12th, and headed to The OSF St Francis Children's Hospital of Illinois in Peoria for Theo's 7:00 AM hospital check in time. We were sent to a small waiting room where we spoke to various nurses, the anesthesiologist, and the Orthopedic Surgeon, Dr. Akeson. The anesthesiologist asked us how Theo does coming out of anesthesia and we told him that the last couple of times he had surgery the "cocktail" they gave Theo was perfect. He said that if it worked well last time then he would go with that. He also mentioned giving Theo a caudal block or an epidural to help with pain in his legs. Last time I talked to Dr Akeson he said that they usually give the kids an epidural, so we told the anesthesiologist that we were fine with that.  

[He didn't like his cap]

Dr Akeson then came in to talk to us. He said they would be performing a Bilateral Proximal Femur Rotational Osteotomy and Bilateral Adductor and Hamstring lengthening. He then examined Theo and marked up his legs to show up where his incisions would be. He then started examining his ankles and asked us if we would be okay if he did an Achilles Lengthening too. We said as long as he thinks Theo would benefit from it then that is fine with us. We then talked about Theo's cast. He said it would be from the knees down. I stopped him and asked for clarification. "Do you mean the knees up?" Nope! The knees down! BEST NEWS EVER! ANNNDDD it will be waterproof! 🙌🏻🙌🏻🙌🏻

After we talked to Dr. Akeson, the nurse came in and said she was going to take Theo back to the OR. We got packed up, gave Theo some kisses, and then headed to the upstairs "Hospitality Room." We were told the surgery would last about three hours so we settled in. I listened to a few podcast while Josh worked on his reports. At noon we headed to the cafeteria to grab something to eat and then we went downstairs to hang out in the waiting room. 

After another hour we saw Dr Akeson walking towards us. He sat down and told us that Theo did great and that we could see him in an hour (or so) after he gets his cast and is in recovery. He showed us the x-rays of Theo's hips and told us that it will be a painful recovery, but Theo will recovery quickly and will have good results. He said that we should be in the hospital for three nights depending on how Theo does. He told us that he asked the anesthesiologist for an epidural, but the anesthesiologist only did a caudal block. They both work by numbing the lower half, but the caudal block wears off faster. I was a little bummed to hear that, but luckily Theo would be on a lot of medications that will hopefully help with the pain. We thanked him and he said he would come see us in Theo's hospital room tomorrow.

[Nice hardware, huh?]

Two hours later (I guess casting takes a LONG time) I got a call that I could go back to see Theo in recovery. He was VERY tired and didn't want to stay awake. After another hour in recovery, they sent us upstair to Peds General Recover on floor 6.

Josh got his badge and met us up there. Theo was VERY happy to see his dada.

[Bandage covering the incision for his hip surgery]

[Bandage under his knees for the hamstring lengthening]

That night I went to the hotel while Josh stayed with Theo in the hospital. Josh said that it was a rough night. Theo was in a lot of pain and neither oxy nor morphine helped. Finally at 5:00 AM they tried valium and that worked! Theo was able to relax and get some sleep. Theo had seven seizures today.

I showed up at 7:00 AM the next morning (Wednesday, April 13th) and told Josh to go to the hotel and take a nap, but he said he was fine. Sleeping in the hospital is hard, but it especially sucks when your child is hurting.

Later that morning the Physical Therapist stopped by to see what kind of transportation Theo would be needing. Luckily, he still fits in his wheelchair, so we didn't need to borrow or buy anything new. YAY!

Next, the car seat people came by and fit Theo for a new carseat. Luckily, he fit in one that they had, so we got a new carseat from the hospital! And the new carseat will work for Theo for a while (it goes up to 100 lbs). 

Severe weather was coming in, so Josh headed home while I stayed at the hospital with Theo for the next two days.

[Storm!]

[I love it when he wants to hold my hand]

Theo had a much better night! The amazing nurses kept on top of his medications, which allowed us both to sleep. Theo had 16 seizures today.

All day Thursday, April 14th, Theo and I hung out at the hospital. The doctor okayed him getting his IV removed, so we had a little more freedom and I could move him to his wheelchair without any help and we went for a walk around the floor.

[Stretching his legs out]

I love staying on this side of the floor so I can watch the helicopters come in!

Theo only had six seizures today.

We had another great night and the next morning, April 15th, Josh drove back down to Peoria just in case we had to be there another night and he could give me a break.

Dr. Akeson came by and saw Theo again and said that we could go home today. I told him that we were going to see PT and OT the following week and he was very happy about that. He told us to make sure we gave Theo a bath every day (easy, since his cast is waterproof) and Theo can get the cast off in five weeks.

The drive back home went smooth for the first hour, but the second hour was a little rough. Theo was in pain and cried a lot. I felt so bad, but there was nothing I could do for him until we got home.

[Theo in his new car seat]

Once we got home Theo was able to stretch out and relax.

While we were at the hospital, Theo's OT, Ms. Laura, brought over this giant Love Sack for Theo to sit on while he recovers. It's huge and awesome!

Gotta watch Encanto while you are healing!

Theo had two seizures on Friday and Saturday.

Theo doesn't usually sleep on his back so that has been a HUGE adjustment. He doesn't understand why he can't roll over. It makes naps and bedtime a little harder.

I wasn't planning on being home for Easter, so we didn't have anything planned except to watch my adorable niece and nephew, Kenna and Porter, sing at church. They did a great job!

Happy Easter! Theo only had one seizure today.

We got these super cute beanies from VOGM.org. I'm looking forward to rockin them in the winter!

We got ANOTHER wrong rug from Ruggable. This is getting annoying.

Theo had his first bath with his cast on and he did great! He doesn't look happy, but he actually really likes baths!

We moved some of Theo's equipment into the basement. He won't be able to use some of it for the next 7-11 weeks. Apparently it's not a good idea to walk up wooden steps in your sandals. I stubbed my toe super bad. I think it's broken, but I've broken all my toes before. It hurts to run and jump rope, so I'm sticking with cycling until it heals.

Sunday night we got SNOW!

If you are curious about Theo's seizure activity, you aren't alone. Theo was prescribed valium to help with back spasms and pain. Valium (aka Diazepam) is what we are supposed to give Theo as an emergency seizure medication. If Theo has 10 seizures in 10 minutes or one seizure lasting more than two minutes, we give him emergency meds. Since Theo is getting these emergency meds daily, he is not going to be having many seizures. It's not his new baseline. I'm sure once we wean him off of the valium, his seizure activity will increase again.

We know that the first two weeks post surgery are going to be hard, so we are doing everything we can to make Theo comfortable and to speed up his recovery. Hopefully staying on top of his meds and getting back into therapy will help.