Theo's Third Embolization - Part II: VP Shunt & Recovery

Tuesday, October 23

Tuesday was a pretty slow day in the PICU. A physical therapist, occupational therapist, and a feeding therapist all came by to do a quick evaluation of Theo. There’s not too much they can do right now since Theo can’t sit up more than 30 degrees in his bed until after the shunt is in. They are still trying to figure out why he has a fever since all of his cultures keep coming back negative, which means he has no infections. He’s still in pain because of the blood in his ventricles and there’s nothing they can do for him. They said even the stronger opiates won’t help. We just have to wait. Dr Russell said they will move forward with the shunt on Thursday even if Theo has a fever because they are sure it’s being caused by the blood in his ventricles, not an infection. They are checking his blood and CSF frequently just to be sure though.

[CSF is pink because of the blood]

Wednesday, October 24

Theo had a rough night. They took him off of the Ativan (anxiety medication), but failed to tell us. Theo was having a hard time all night and when I came back in the morning he threw a FIT! His heart rate was over 200 and we couldn't calm him down. I mentioned this during Rounds and they said they will put him back on the Ativan.

Theo had a temperature all day, but we were able to manage it with cold towels and a fan.

[Bruises on his wrist from the arterial line]

Thursday, October 25:

Today was the day I knew was coming, but still wasn't prepared for. They took him at 7:30 AM for his 8:00 AM procedure. We saw Dr Lin as they were rolling Theo away. He said that he would come see us in Theo's room after the procedure was done. Josh and I figured we had some time so we went and got breakfast and then came back to Theo's room. A few minutes later, Dr. Lin walked in! He said the procedure went well and they put in a medium-sized, non programmable valve. He said Theo should be up in a few minutes! Yay!

[I'm not eating my feelings!]

At 9:30 AM they brought Theo back to his room. Half his head was shaved and I was shocked! But he looked great!

  

[Three head wounds: One for the valve, one for the tube, and one where the EVD was]

[Belly wound]

Theo was super tired after the procedure and ended up sleeping most of the day.

Friday, October 26

Neurosurgery doctors and nurses have been in this morning and they all seem very pleased with Theo’s recovery. The only reason Theo is still in the PICU is due to his sodium levels. Once they are under control he can be moved to the intermediate side. They are going to try an “old drug” (Gabapentin) that targets pain in the nerves (its common with diabetic nerve pain), in hopes that it’ll help with the pain caused by the blood in his ventricles. He seems to not be as upset today even though he still has pretty bad “stranger danger.” He’ll lay in bed and look at his toys and be perfectly content as long as no one is around.

Later in the day Dr Russell stopped by and said Theo’s sodium levels are great so they are turning off his sodium drip. If his levels remain good we will be moving to the intermediate side. Yay!

[Trees changing color at the hospital]

Saturday, October 27

Theo’s sodium levels are holding great so they will move us to the Intermediate side of the PICU!

Current medication:

- Tylenol (fever)

- Phenobarbital (seizures)

- Keppra (seizures)

- Gabapentin (nerve pain)

- Florinef (Sodium in brain)

- Zantac (acid reflux)

- Ativan (anxiety - as needed)

I got to hold Theo briefly today. He wasn't a fan. It just seems like he is still in pain and he just wants to be by himself in his crib. It sucks. I've only been able to hold my baby for a grand totally of TEN MINUTES during the last TWO WEEKS. It just breaks my heart.

Sunday, October 28

Josh has been away from work for the last two weeks and it was time for him to go back. I drove him back home, picked up a few things, and then drove back to the hospital. When I got back to the OSF St Francis Children's Hospital of Illinois, they told me that Theo was being moved upstairs to General Pediatric Recover ("Gen Peds"). 

I was so excited because usually you don't stay in Gen Peds very long before they send you home.

Welp, I shouldn’t have gotten my hopes up. Theo spiked a 103.4 fever so they are doing three day cultures on his urine and blood. Neurosurgeon is positive it’s still due to blood in the ventricles and not an infection, but they have to double check. They may “tap” into the valve on his shunt to get a sample of CFS, but that’s a last resort.

Theo's fever continued to bounce around so they started alternating between ibuprofen and Tylenol. 

[Better view on the 6th Floor]

[One of these things is not like the others]

[Poor baby with his 103.4 temperature]

Monday, October 29

Theo slept pretty well last night after we got his fever under control. Josh and I have been alternating between sleeping at the hospital and the hotel. Josh let me sleep at the hotel for the last three nights (isn't he the BEST?!) since he was going back to work and I would be staying at the hospital and taking care of Theo by myself all week.  

During Rounds the Gen Peds doctors said that they would be increasing his Gabapentin to help with Theo's pain.

PT came by and brought Theo a feeder chair. He sat in it (reluctantly at first) for about 45 minutes before he started getting tired. 

Theo smiled at Josh today during FaceTime! I haven't seen him smile in two weeks! It makes me so happy!

Our nurse informed us that Neurology wanted to increase Theo's phenobarbital (to help with his high pulse).

[Incision for the valve]

[The valve - It sticks up pretty high] 

[Valve sticking up]

[EVD incision]

[Tube for VP shunt]

I got the impression today during Gen Peds Rounds, that Theo and I may be here for a while. It seems like it just depends on who we are talking to. Neurosurgery and IR are ready for us to leave, but the Pediatric group isn't ready. Good thing I grabbed some more clothes while I was at home yesterday.

Theo's Third Embolization - Part I: Embolization and EVD

I thought this would be the easiest of Theo's three embolizations. I was so very wrong.

Monday, October 15
Theo, Josh, and I arrived at the OSF St Francis for Theo's 6:30 AM check in. We were taken to the IR Pre-op waiting room where we were visited by anesthesia, various nurses, and our favorite people from IR. Dr Fraser said that Theo's procedure would take anywhere from 1-5 hours and we would get a call every hour to let us know how Theo was doing.

At 8:10 they took Theo to the OR for his procedure. Josh and I spent the next five hours pacing around the hospital. A nurse called to update us hourly, but all they could really say was that Theo was doing great and they didn't know how much longer it would be.

Finally at 1:06 PM we got a call from the nurse telling us that Theo's procedure was done and that Dr. Fraser would be meeting us in the conference room. He it was a “tough one” but Theo did good. It took so long because they tried to go in another way (anterior), but they ran into a bunch of veins that they couldn’t mess with because they could have caused hemorrhaging (and, according to Dr Fraser, “you don’t wake up from that”). So they ended up going back through the heart and into the brain added a bunch more coils. As of right now the blood flow is 100% stopped. The pressure change in the brain is drastic and they have to monitor him closely. Dr Fraser is happy with all the work they did. We saw Theo briefly as he was being moved to the PICU. He’s pale and sleeping but he had his Paci!

[Drawing from Dr Fraser]

[Length of procedure]

IMAGES:

They took Theo to the PICU where he would be recovering for a couple of days. Over the next few hours Theo got a blood transfusion and various meds to help with the pain. Dr. Fraser said that they were able to successfully plug the last two feeder veins, but that he would likely have headaches for the next 10 days. He also said that the aneurysm could swell and press up against an aqueduct (drainage), which could cause his hydrocephalus to worsen since that aqueduct is responsible for draining CSF from his brain. If it is blocked then the CSF has no where to go and that can cause his ventricles to fill.

During the night Theo would either cry, sleep, or vomit. His cry was high pitched and was something that neither Josh nor I had EVER heard before.

Tuesday, October 16
Theo continued to be in pain, but the Neurosurgery team kept checking his fontanel and they aren't feeling any swelling. Theo's cries were painful to hear. The doctors gave him some anti-anxiety medication, Zofran, and fentanyl, so he could sleep. 

Dr Lin stopped by and said that they will see about doing an MRI to make sure there wasn't too much pressure in Theo's brain.

The PICU doctors said that Theo was ready to be moved out of the PICU and up to General Pediatric Recovery. Right when they were moving us Mark, APN from IR, showed up. We told him that we were worried about Theo and that he wasn't ready to leave the PICU. He was crying and still in a lot of pain. Mark listened to us and then took a quick peek at Theo before making a call to Dr Fraser. Theo needed an MRI now and Mark was on it!

Once an anesthesiologist was available they were able to take Theo for a full MRI (MRA and MRV).

After the MRI Theo was taken to recovery and Josh and I were called down to help him recover. We couldn't get him to stop crying and he was still in a lot of pain.

Finally, they gave him some more fentanyl and he was able to sleep.

Preliminary report for the MRI came in that night. Theo has a pseudo aneurysm with swelling. They have moved him back to the PICU and will do another MRI in a few days unless the doctors want to act quicker and do another procedure. Theo's heart rate and blood pressure is higher then normal.

IMAGES:

Wednesday, October 17
Theo had a rough night. He woke up every hour or so and cried for a few minutes but then he would fall back asleep.

In the morning Neurosurgery, PICU doctors, and the IR teams all showed up to discuss the MRI. The pseudo aneurysm was not new and it’s small and the blood will be re absorbed into the brain. His hydrocephalus is a concern so they decided that putting in a EVD is necessary. They will drill a hole into his skull and put in a tube that will drain out the excess CSF. They are able to do the surgery in Theo's PICU room so we were asked to wait outside. The Neurosurgeon (Dr. Russell) said the surgery takes about 20 minutes. They would be "going in blind" because the aneurysm was blocking their view of the drainage, but they were very confident it would be an easy surgery.

What was supposed to be a 20 minute procedure turned into an almost four hour ordeal. They got Theo all ready for Dr. Klopfenstein and Dr. Russell to put the EVD in and Theo’s heart rate shot up and he got really stiff. He was having a seizure. They waited for it to end, gave him some medication, then proceeded with putting him under anesthesia. They were able to put in the EVD without any issues. Then they decided that they wanted to put in an Art Line so they can more accurately measure his blood pressure. After that was done they took him for a quick CT scan to make sure that the EVD was in the proper location and to check for any bleeding. 

The CT showed that the EVD is good and there is some bleeding but that was from the pseudo aneurysm from earlier. Dr Fraser looked at the CT and there is no emergency but they want to keep him fully sedated until his MRI tomorrow night. The doctors said that when they put the EVD line in some CSF squirted at them. So the pressure in his brain was high and this was definitely the right thing to do. After the MRI tomorrow night they will decide if he needs a shunt. It seems even more likely now that that will happen.

Since Theo has to be on so many medications (anti-seizure and blood pressure meds were recently added) they needed another access point. They tried to tap some other veins but they kept blowing out. Finally they decided to put a PICC line in his arm.

This was another LONG procedure that they were able to do in Theo's PICU room. Sadly, the PICC line went the wrong direction when it got to his neck, so they have to pull it out a little bit, turn it, then go back in. After another hour they finally got it in correctly. 

[EVD]

Neurology wanted to monitor Theo for more seizures, so they put 26 electrodes on his head and hooked him up to a computer. 

Theo received another blood transfusion before Josh tucked him in for the night.

Thursday, October 18
Theo's night was pretty quite, but that's what happens when you are almost complete sedated. PICU doctors are worried that Theo is not looking to the right when his eyes are open. The Neurologist (Dr Zaho Liu) said it's because his is having more brain activity on the right side of his brain and it's pushing his eyes to the left. They haven't seen any seizures though, just a few "brain spikes," so that means his medicine is working. 

[Theo's haircut from his EVD]

[EEG]

[Theo's CSF was pink when it first came out because of the blood]

During morning rounds Theo’s legs started jerking. I thought he was having a seizure, but it was actually him coughing. Dr Tripathi (PICU Dr) was outside the door so I got him to come in and check Theo. I was so scared and I panicked, but I didn't know what was happening! Turns out he was fine and he was coughing with his whole body because of the breathing tube. They said coughing was a good sign that his lungs were still working.

[Feeding tube]

Friday, October 19
Friday morning was a little chaotic! X-ray showed up to make sure Theo's feeding tube was in the right spot (it was) and then a tech from Neurology showed up to take the 26 electrodes of Theo's head. 

Dr Russell said Theo is looking better though and he’s happy to see him awake and looking around. He is planning on weaning Theo off of the EVD to see if the swelling has gone down and the aqueduct is open.

The nurses had a hard time getting all his machines ready for him to go to the MRI, but they figured it out and we were only an hour late.

[MRI Prep! Dr. Tripathi got involved when they were switching his breathing tube out]

[Full entourage to the MRI]

After Theo got back from the MRI, a Neurology tech came by to put the 26 electrodes back on.

Dr Fraser and Mark came by and Dr Fraser is very happy with Theo’s scan. He said that it looks very good considering the circumstances. The pressure and swelling have gone down significantly, his ventricles have shrunk slightly, the Vein of Galen is still plugged, the pseudo aneurysm is thrombosing, and there is a lot of new blood flow. He did see some brain damage that was calcified, but he has high hopes that Theo brain will get stronger, continue to develop, and work around the damage. He wants to see Theo in a year for an angiogram check up.

Theo’s been having a lot of brain activity that comes with high blood pressure and pulse. Neurology (Dr Blas Zelaya) said it’s not seizures. 

Before bedtime a cardiology tech came by to do a quick EKG.

Saturday, October 20

Dr Klopfenstein’s Residents came by and said the plan is still to wean him off of the EVD and see how he does. 

Theo is more alert now then he has been in days and everyone agreed it was time to take his breathing tube out.

In the afternoon, Neurology (Dr Blas Zelaya) stopped by to update us. They haven’t seen any seizures on his EEG, so they will remove the electrodes soon.

[Electrodes off... again]

Sunday, October 21

Theo slept pretty well, only woke up when someone came in the room. When Theo is awake he seems hungry and in pain. Dr Klopfenstein’s Residents came by again for a quick check in.

The PICU doctor (Dr Deshpande) said we will wean him off of the oxygen and his blood pressure medication. If his blood pressure stays below 110 for four hours they will take the ART line out and I can hold him. Yay! They are going to start his feeding tube back up and see how he does.

Monday, October 22

Dr Russell stopped by in the early morning to get more CFS to do cultures. He said the other ones showed no growth, so Theo does not have an infection. 

Dr Lin showed up shortly after and said they will "shunt him on Thursday." I was shocked, but IR, Neurology, and Neurosurgery all agree it's the best thing to do at this point. 

Theo got his Art line out, so I was to hold him for a little while! His white blood cell count and other blood work has all come back good. He still has a fever though. Dr Russell stopped by again and said that Theo has some blood in his ventricles. Good news is that there isn’t much and it’s being absorbed by the ventricles and sent out via the EVD. Bad news is that it gives people a terrible headache and there’s nothing they can do to help with the pain. He also mentioned that if Theo’s blood work continues to be clear of infections they may move up his shunting.

We gave Theo a "bath" and tried to get some more of the sticky stuff out of his hair. He wasn't a fan of us touching him. 

That night he got a fever and was in some pain. Neurosurgery thinks it's because of the blood on his brain.

As of right now Theo's surgery is scheduled for Thursday, October 25th.

Thank you so much everyone for your love, support, thoughts, prayers, good vibes, fasting, and everything thing else. We really do appreciate it!