Theo's Second Embolization

Tuesday, September 4th:

We were told to be at the OSF St Francis in Peoria at 6:30 AM on September 5th. Since the hospital is almost two hours from here, Josh, Theo and I went down the night before to stay at a hotel.

We got checked into the hotel and then went and got sushi and ice cream at Theo's! It was Theo's first time at Theo's and he was NOT happy (being a tired baby can be hard sometimes).

Wednesday, September 5th:

We all got up super early and headed to the hospital for our 6:30 AM check in.

[Early morning!]

After completing all the necessary paperwork, we headed upstairs to the Interventional Radiology waiting room. We put Theo in his little hospital gown and then various nurses and doctors came in to tell us the plan: We will all go downstairs to MRI where they will put Theo under anesthesia, then they will do the MRI (it takes about an hour), then while he is still under they will move him upstairs so IR can do his second embolization. We will not be able to see him in-between the MRI and embolization, but they will let us know once he is with IR.

[Thumbs up from Theo!]

Anesthesiologist then came in and took us downstairs to get Theo's MRI.

After a few hours of waiting I got a call from the IR nurse. He said that they had Theo for a half hour and he’s doing well. They are still working on him, but they don’t have a timeframe for when they will be done.

An hour later I received another call from IR. It’s going slowly, but they are still working on him. His veins are small and they want to be careful.

Just as I was getting the final call from IR ("embolization was done and Dr. Fraser wants to see you"), my parents showed up.

We all went to the conference room where we met with Dr. Fraser. He said it was a tough one, but they were able to block a big feeder vein (using more coils and onyx). He’s hopeful that Theo’s development will pick up, but there is the possibility of seizures. There will be new blood flow to areas of the brain, which can be good (new development) or bad (seizures). He said that he will most likely have to have another embolization in a year or so. Dr Fraser drew on the white board and showed us what they were able to accomplish. He plans on stopping by Theo's room later to show us the MRI and angiogram.

A few minutes later we received another call telling us to head to the PICU.

Theo was super groggy and pale, but I remember he was that way last time. They then said that he was going to smell for a while and that it was perfectly normal. The onyx that they used to plug the veins put off a very distinct smell. And apparently it smells different to everyone. I thought it smelled like corn, the nurse thought it smelled like tomatoes. 🤷‍♀️

Theo threw up a little, but after a few hours he was feeling much better and was able to eat 1/4 ounce of formula. He has an IV, which is also helping to keep him hydrated.

That night I stayed with Theo at the hospital and Josh went back to the hotel with my parents to get some sleep. 

During the night Theo threw up again, but it wasn't much. I get super sick after being under anesthesia, and it looks like Theo does too.

Thursday, September 6th:

They did blood work on Theo this morning. His platelet count is low. They did another blood draw to double check before they decide if they will do a transfusion.

Dr Lin, Neurosurgeon, stopped by. He said that Theo’s MRI looks good. There is no new brain damage and the ventricles are not any bigger so they are not putting pressure on the brain. He thinks that as long as he doesn’t need the platelet transfusion, Theo will be ready to go home tomorrow.

Neurosurgery nurse stopped by and said they want to do an ultrasound but they don’t know how much they are going to be able to see since his fontanelle is closing up. If they can’t see what they want to see they will send him down for a “fast MRI”.

A nurse came in later and did an ultra sound of Theo's head. He did NOT like that! But I played some music and we got through it. 

The PICU pediatrician came in and said they are giving him a transfusion because his platelets and hemoglobin were low. It happened last time too!  Ugh. Plus Theo won't take a bottle so they will keep him until he eats.

The doctors think that Theo is not wanting to eat because he has some acid reflux, so they are getting him some medicine for that. They are also planning on cutting back on his IV so that will encourage him to eat.

They did the platelet and blood transfusions back to back. Hopefully his numbers will hold and we can go home soon.

Dr. Fraser, Interventional Radiologist, and his nurse, Jessica, came in for a visit. He wants to do Theo’s next embolization in the next 3-4 weeks. They were able to plug up two main feeder veins (80% of the blood flow), but there are two smaller feeder veins that he wants to close off. He thinks the sooner the better. Once the feeder veins are closed off then Neurosurgery will put a shunt in to drain the excess CSF.

This news was a bit shocking, BUT Dr. Fraser thinks it will give Theo's brain the best chance to recover and grow properly. I love that he is so concerned about Theo's development.

That evening Josh and I went on a date! We headed to Two25 were we had steaks, potatoes, salads, and two desserts. It was so nice to get out of the hospital and have some one on one time. Thanks mom and dad for babysitting! 

I took Josh back to the hospital and I headed to the hotel.

While we were at dinner (I found this all out the next morning), Theo ripped his IV out of his foot and was SCREAMING! They couldn't figure out what was wrong with him so they kept trying to feed him and get him to calm down. At the same time, they were having my parents and Josh pack up our room (good thing we didn't have much), so they could move Theo to the "less critical" side of the PICU.

After moving rooms, Josh noticed that the IV was out. They tried to put it in his other arm but they blew out his vein. They finally ended up getting it in his foot. Josh said it was a rough night, but his finally got Theo to sleep and they were both able to get a few hours of rest before the nurses came in to take more blood.

Friday, September 7th:

Dr Lin, Neurosurgeon, just stopped by and he said Theo's fontanelle is a little full so they are going to monitor that. He also said that he wants to wait and see how Theo does after the third embolization and he doesn't think Theo needs a shunt right now.

Jessica, IR nurse, stopped by to check on Theo and to let us know that his next procedure is scheduled for October 15th. 

Theo ate two ounces this morning and is sleeping well, so we can hopefully go home tomorrow.

A Pediatrician from General Pediatrics Recovery stopped by to evaluate Theo. He is concerned that Theo is not eating well, but since he is doing fine they want to move him to the 6th floor into General Recovery. Once they have a bed available they will move us.

 We got back Theo’s blood work and his hemoglobin and platelet levels are holding steady. YAY!

My parents volunteered to watch Theo again so Josh and I could have another date night.

After dinner I came back to the hospital to stay the night and Josh went to the hotel.

Theo was having a hard time during the night (lots of crying and whining), so I asked for more Tylenol. They told me that they couldn't give him any more but they could give him some Benadryl to help him sleep. Poor baby!

At midnight they decided to move us to the 6th Floor. Ugh. Of course, this woke up Theo and he was MAD! It took me a while to get him settled down and back to sleep. Needless to say, I only got a couple of hours of sleep that night.

Saturday, September 8th:

We woke and I worked on getting Theo fed. He was doing okay, but he doesn't eat very well if he doesn't sleep well.

I asked the nurses to let him sleep and they agreed to just use the vitals on the monitor (instead of waking him). He took a good nap and I was able to get him to eat!

[Mommy and baby naps]

[Lunch at the hospital cafeteria... balance, right?!]

The Pediatrician came in and told us that we were being discharged today! YAY!

After a few more hours we left the hospital and headed back to the hotel. 

Thank you mom and dad for coming out and supporting us. And thank you for all the love and support we've received from family and friends. We know we will be back in in five weeks, but hopefully that will be the last embolization *fingers crossed*

IMAGES:

Theo's 13 Months Old

Theo’s 13th month has been another busy one! We started this month at the end of our two week trip to Downers Grove and ended the month at the OSF St Francis Children's Hospital for Theo's Second Embolization Procedure (both covered in other post).

Theo is still going to PT, OT, DT, DTV, and the Chiropractor weekly.  

Theo continues to have a love/dislike relationship with all of his therapist. But they can usually make up any hard feelings with the swing!

[Theo didn't know what to think about this one!]

While Theo is sitting up in his feeder chair he will look both ways. But when he is down in the floor he has a hard time looking to his right. The therapist think it may be an inner ear issue. We have been working on getting Theo's right ear down, but it is a hard process.

[Distraction with lights]

Since Theo's one year check up at the Pediatrician we have been working really hard to get him to gain weight. If you don't remember, he's only 18 lbs 10 ounces (15th percentile). We have been giving him full fat dairy products and even sneaking heavy whipping cream into his formula. After a week he gained almost a pound (yay!), but his stomach was NOT happy!

Through Early Interventions we started seeing a Dietitian. She suggested cutting out ALL dairy and seeing if that helps. She also thinks that he may have some acid reflux. She put Theo on a high calorie, non-dairy formula called Elecare Jr. It's insanely expensive ($45 for a 14.1 oz can vs Enfagrow at $22 for 36.6 oz), BUT Theo needs the calories. She also recommended that we start seeing a Feeding/Speech Therapist ASAP.

It was hard getting Theo switched over to the non-dairy formula, but after a week of transitioning we were successful! He is a VERY picky eater!

  

He still doesn't want to eat non-formula food. And we've tried EVERYTHING!

[Holding his own spoon]

Theo's weight is a HUGE concern of mine (and the doctors), so we really need to see the Feeding Specialist so I can pick her brain and she can help my kid eat!

[Theo is still wearing his DOC Band 23 hours a day. It's been rubbing his hair off on his left side though. It doesn't seem to bother him, but it can look a little strange]

[Helmet hair!] 

This month Theo also had an eye appointment with his Ophthalmologist. Theo’s left eye is a little “behind” but the doctor has a plan for us. We are most likely going to do some patch therapy (like a pirate) and if that doesn’t work then Theo may need glasses.

We also had an appointment with Theo’s Cardiologist this month. They did an Echocardiogram and EKG and everything looks great! He’s approved by Cardiology to go ahead with his MRI and Second Embolization.

Josh and I continue to try and be the best parents possible for little Theo. Josh works a lot, but we love being a able to FaceTime with him!

Josh had off THREE full days for Veterans Day so we took advantage of that by getting some frozen yogurt, Lou Malnati's, and Portillo's.

We were told that Giordanos and Lou Malnati's had the BEST deep dish pizza in the Chicago area. Lou's has the better crust, and Gio's has more cheese and is stuffed. So, when we decided to try Lou's we ordered extra cheese (since that was the biggest complaint against the deep dish chain). OOPS! The pizza was delicious and it DID NOT need extra cheese!

We also went to another Chicago-land staple: Portillo's! We've been here before (a few years ago?) and neither of us were impressed. I did some research and we wen't back to try it again. It was good, but I don't get the hype 🤷‍♀️

[Date night! We go on a "Family Date Night" once a week, which usually consist on going out to dinner, coming home, and going to bed. But since Josh was off for a few days and could sleep in, he decided to bust out his Play Station and get a little gaming in before bedtime.]

I decided to go and get pampered at a salon close to Theo's PT. I got a mani/pedi and it was totally worth it!

Along with taking care of Theo, I work out six days a week. It's hard in the Raptor, but I make it work!

[New exercise bike in the back]

I went to go get Theo from his crib and when I put my arm in I felt a bunch of spider webs. Gross! I turned on the lights and just two inches from Theo's face was a HUGE spider! I freaked out, grabbed Theo, and called Josh. He offered to come home and take care of it because I was sobbing, but I put on my big girl pants and took care of it! After saving my baby, I put a Tupperware container over the spider and then put a large candle on top of it. I didn't know how strong the spider was! After an hour, or so, I got my courage, removed the Tupperware, grabbed the spider with a paper towel, and threw it outside! I'M SO BRAVE!

Theo is currently at the OSF St. Francis Children's Hospital in Peoria recovering from his second embolization on his brain aneurysm. According to the Interventional Radiologist, the procedure was a “tough one,” but Theo did well. They managed to plug two of the four “feeder” veins, thus stopping 80% of blood flow to the aneurysm. During recovery Theo’s platelet and hemoglobin levels got too low so he had platelet and blood transfusions. We will be back at the hospital for Theo’s third embolization on October 15th. After that is done Neurosurgery will decide if and when to put a shunt in. I'll be writing a full post on this next.