On November 27th, we got up at 3:00 AM, so we could get Theo up and ready (aka "cleaned out") before we headed to the hospital for his 5:00 AM check in.
[Theo LOVED Home Alone]
[Our VOGM Warrior all ready for surgery! Thanks VOGM.org for the shirt!]
Theo was first sent to get some bloodwork done (incase he needed a transfusion) before we were sent downstairs.
We were taken to a small pre-op room where we got Theo dressed in his adorable, tiny hospital gown.
The Vascular Neurosurgery nurse then came in and put a bunch of stickers (they looked like Fruit Loops) on Theo's head. She said they were to assist with imaging during the MRI.
[Theo did NOT like them!]
The nurse then walked us through the plan for the day:
First, Theo would be put under anesthesia and taken for an MRI. After imaging they will take him to the OR to perform a "bilateral frontal and parietal craniotomy," which is a fancy way of saying they are planning on cutting him ear to ear. During the craniotomy they will cauterize the fistula and then place an EVD to help with drainage and so they can keep track of his ICP. After the craniotomy is done, IR will come in and perform an angiogram to check on the fistula (which hopefully won't exist anymore) and the embolized Vein of Galen. He will then be sent to the PICU to recover and we can see him then. She told us it would be a LONG day.
At 6:30 AM they took Theo for his MRI and Josh and I headed upstairs to claim the comfy chairs in the "Hospitality Room." I watched the new episode of The Mandalorian and then went on a walk.
At 7:30 AM we saw one of our favorite nurses, Jessica, from IR. She had us sign some paper work and then reassured us that Theo was in good hands.
At 8:30 AM we got a call from the Vascular Neurosurgery nurse. He said the MRI is done and they are now looking over the results and deciding how to approach the craniotomy (aka "navigation"). They are getting the OR ready and should be starting surgery in the next 45 minutes.
At 10:30 AM we were told that they had finally reached the site and they were cauterizing the fistula.
At 11:05 AM we got the word that surgery was done and the doctors were patching Theo up. Dr. Klopfenstein called me himself to tell me that Theo did great and he believes they "got it all," but the angiogram will have to confirm that.
IR then performed the angiogram and when they were done we were told to go to a conference room to meet with Dr. Fraser.
I've known Dr. Fraser for a few years now and I've never seen him so excited before. He was almost giddy! He told us that Dr. Klopfenstein is brilliant and did an amazing job with this surgery. He used words like "life saving, miracle, in tiger county, and scary stuff" to describe the surgery. He said that right now Theo is considered "cured" since his Vein of Galen is still closed and the fistula is gone. We are fortunate to have such talented doctors on our team.
At 2:30 PM we were finally able to get into the PICU to see Theo and he was MAD! His incision from the craniotomy looks great and they didn't have to use staples! 🙌🏻🙌🏻🙌🏻 THANK YOU DOCTORS! Theo does have a stitch on the back of his head from the clamps, an EVD so they can monitor his ICP, and an art line to measure his blood pressure. Theo's blood pressure and heart rate were pretty high, so they gave him some medications to help with that.
[Close up of the incision and the EVD (orange tube)]
[Super Bear and Baby Yoda are always close by]
We spent the next few hours calming Theo down and getting him comfortable.
We got an hotel in Peoria, so Josh and I could switch off staying there and at the hospital with Theo. The best part about Peoria is all the good food! That night we got pizzas and Mac-n-cheese from Sugar Wood-Fired Bistro. And Thanks to Door Dash we got all this amazing food delivered right to the hospital!
That night Theo slept on and off, but was in some pain. Every time he would cough he would cry. It seems like most of his troubles have to do with his throat being irritated from the breathing tube.
The next morning, November 28th, Theo had a CT scan that "looked good." He had a little swelling around his craniotomy incision and the doctors warned us it could get really bad before it gets better.
[Gotta bring my computer and fit board for working out!]
[He loves his ball]
[Picture of the Children's Hospital I took while I was on my daily afternoon walk]
That afternoon Theo developed a fever of 101.7. We knew this was likely, so they gave him Tylenol and just monitored it.
Josh and I were able to work at the hospital, which was nice and that night we ordered BBQ from The Blue Duck BBQ Tavern (another local fav!).
Theo had a pretty rough night at the hospital. His fever didn't break until 5:30 AM the next morning. He was coughing a crying a lot too. Poor little guy is just confused and in pain. Not a good combo.
The next morning, November 29th, Theo's fever finally broke, but he was still crabby.
At 7:45 AM, Dr Garst with Neurosurgery (one of Dr K's residents) came by to check on Theo. He said that because Theo's ICP has been low and consistent he would be taking the EVD out. YAY!
[Josh and our PICU nurse assisting with the EVD removal]
[So much better!]
At 9:30 AM the doctors rounded and told us that they were going to wean Theo off of the HR and BP medication and take his art line out soon. Once he is weaned off the medications they can move us out of the PICU and up to General Recovery on the 6th floor.
Right after rounds the nurses took Theo's art line out and they started weaning him off of his HR and BP medication.
That after noon Theo developed a fever of 101.6, but felt good enough to roll onto his side and lay on his iPad.
After a few more hours, Theo wean was complete and they moved him up to General Recovery. His fever continued, so they took urine cultures to see if he has an infection.
[Bye PICU! Thanks to the amazing nurses and doctors who took such great care of my little boy!]
That night Theo continued to be fussy and he threw up his dinner. They gave him some anti anxiety meds to help him relax and sleep.
The next morning, November 30th, Theo threw up again and was given some morphine for his pain.
Dr. Garst stopped by and said if we can get Theo off morphine and the anti anxiety medications AND if he tolerates his feeds, we can go home tomorrow.
Mark, our other favorite APN, with IR stopped by and was happy with how Theo is doing and how his wounds are healing.
[Theo watched some videos from his Cow Class. He loves his teacher!]
[View from our room]
That night they turned off Theo's IV since he was tolerating his feeds and getting fluids through his G-tube.
[Theo LOVES his dada]
December 1st was our last day at the hospital, for now...
Mark with IR stopped by again and said that we will see them in 6-12 months for another angiogram.
The man, the myth, the legend, Dr Klopfenstein stopped by and said Theo is cleared to go home this afternoon. He was very impressed with how well Theo's recovery is going. He said the surgery was one of the most challenging and that they all high-fived and congratulated each other when it was done! He's such a kind man and I'm so glad he is on our team. If all goes according to plan we will never see him again.
Just before discharge, we noticed the stitch on the back of Theo's head was swelling. We were told to keep an eye on it and keep Theo's head elevated as much as we can.
At 2:30 PM we were discharged to go home! YAY!
[Theo waving]
[Theo blowing kisses]
[Let's get out of here!]
Who has brain surgery and then only spends two nights in the PICU and just two nights in General Recovery?! THIS KID!!
Due to our amazing team of doctors and nurses, Theo is leaving the hospital with NO STAPLES, one stitch on the top of his head (from the EVD), a cauterized fistula, a still functioning VP shunt, a (still) embolized VOGM, a stitch on the back of his head, and another gnarly scar on his head.
Again, thanks so much for all the thoughts, prayers, and good vibes. Theo still has a long and bumpy road ahead of him, so please keep those good vibes flowing our way!
[My last Rice Krispy Treat... for now]
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