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.
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