Tuesday, October 30
Today was a hard day for me.
They started Bolus Feeding last night in order to get Theo's stomach ready for normal feedings. I asked if we could delay his morning Bolus feed this morning and they said he needed his breakfast, but we would delay his noon feeding so I could try the bottle.
[Morning in Peoria]
Theo's Phenobarbitals level was 33, which is good since they want it above 30.
Dr. Lin stopped by and was concerned that Theo is still in pain. He ordered a CT scan just to make sure everything looks good with the shunt.
Dr. Russell, Jenna (APN with Neurosurgery), and Mark (APN with IR) all stopped by with the same message: get him eating and get him home!
I was feeing really good about going home until General Pediatric Rounds. One of the doctors started talking about how the CT scan may not happen for one to two weeks and during that time we can work on getting Theo eating from the bottle again. They also brought up our South America trip and how we may not be able to go AND they started talking about a G Tube!
I completely freaked out and called Josh and my mom crying!
After I got back from lunch (and my crying session) I was told that they were taking Theo down for his CT scan! Yay!
After the CT was done a Feeding Therapist stopped by to watch me feed Theo. He only took a few swallows of milk, but then we tried to feed him prunes and he was VERY interested in those.
Dr Russell then came by and said the CT shows a little bit of air in his ventricles, but it’ll get absorbed, along with the blood, with time. I also showed him the bruise on Theo's neck and he said it was from the tube and it was normal. I also talked to him about how General Pediatric Rounds went that morning and how concerned I was about them keeping us here for another two weeks.
That night Theo had a fever of 101.1. We gave him some Tylenol and it came right back down.
Halloween, Wednesday, October 31
My mom is one of the best people I know! After I called her yesterday crying, she jumped in the car and drove all the way back to Peoria!
The General Pediatric Rounds went better today. I have a feeing someone talked to them on my behalf and they were much "softer" with me. We discussed our trip to South America and they made it clear to me that if Theo's shunt is going to fail, it's going to fail. Being on the trip does not make that more likely. The biggest problem is getting to a hospital. So worse care scenario, we have to life flight him off the ship. The chances of that are so unbelievably slim, but they want us to be aware of the risk. We also discussed keeping in the NG tube and sending us home, but they want to see how the next few days go.
Current medication:
- Tylenol (fever)
- Phenobarbital (seizures) - Twice a day (9 AM/9 PM)
- Keppra (seizures) - Twice a day (9 AM/9 PM)
- Gabapentin (nerve pain) - 3 times a day
- Florinef (Sodium in brain) - Levels are holding - Discontinued
- Zantac (acid reflux) - Twice a day (9 AM/9 PM)
- ibuprofen (fever/pain) - As needed
This year for Halloween we were supposed to go to Ohio. Theo was going to be Zero from Nightmare Before Christmas and his cousin, Dane, being Jack Skellington. We went out and bought a white beanie, puppy ears, and orange face paint (for the pumpkin nose) before we came to the hospital. After we realized that we would not be able to go to Ohio, I asked Josh to return Theo's costume. Of course, the store wouldn't take it back this close to Halloween. Ugh! They would exchange it though. So Josh got him a TMNT costume that, hopefully, he can wear next year.
When I was at home on Sunday I grabbed Theo's R2-D2 Mickey Mouse ears so he could wear something fun on Halloween. He was NOT amused!
Dr Russell tapped into Theo's VP shunt reservoir to get some cerebrospinal fluid to test. And by “tapped” I mean they stuck a needle in his poor head. He wasn’t too happy. The fluid showed “old blood” so he doesn’t have a current leak, but it’ll still take time to absorb or be sent out through the shunt. Dr. Russell is very confident that there is no infection, but Theo just has a bad headache.
[Tap]
Before bedtime we FaceTime-ed with Josh. Theo smiled at him and my heart melted!
That night they gave Theo a dose of Decadron (steroid) to help with the inflammation cause by the blood and air in his ventricles. I feel like he slept SO much better!
Thursday, November 1
Theo slept much better last night and he’s in a super good mood this morning. We listened to Disney music, played with some toys, and he SMILED at me!
The Pediatric team is going to let us skip his next bolus feeding so that he will get hungry and l can hopefully bottle feed him, but they are still confident that we will go home on Friday WITH the NG tube.
After Rounds, a student and her teacher came into our room and spent a few hours working with Theo. The teacher was VERY intense and overwhelming. I get that the students need to learn, BUT it was a little much.
The gave Theo and bath and washed his hair with a warm shower cap, which actually got a lot of the gunk out. They also replaced Theo's NG tube. After they pulled out the NG tube the teacher GUESSED what size it was. Turns out it was a 6.5 and they put in an 8! More on that later...
[Tape already peeling up]
After the intense teach and student left (FINALLY!) I got lessons from our nurse on how to feed Theo with the NG tube. An x-ray was done and it showed the NG tube was too far down so they had to pull it out a bit and re-tape it. UGH! During our lessons Theo started gagging and spit up a bit.
That night when Theo was getting his night time meds, he started gagging and throwing up. It was such a mess! I thought it was because he had just gotten a new tube in and his throat was irritated. Theo also has allergies and you can hear the congestion in his nose and throat. I thought this could also be the culprit.
Friday, November 2
The next morning, Josh drove down to help us pack up and get discharged from the hospital.
Dr. Russell, Dr. Lin, Jenna, Dr. Fraser, and Jessica all came by to check in and make sure we were ready to go home.
Theo started gagging and throwing up again and it was then that Josh realized that Theo's NG tube was larger than the one he had before. We brought this up to our nurse who immediately jumped on the computer and looked up the size of the one they put in two weeks ago and they one they put in yesterday. Easy peasy, right?! Why didn't the teacher do this instead of GUESSING the size?! I was so mad! We then told the General Pediatric team, but they thought it was fine to leave the larger size in. I told them they HAD to put in a smaller size before we went home. Theo could barely breathe and there was no way he could bottle feed with that larger tube in.
Our nurse and a few other nurses stepped in to voice their concerns about him having the larger tube, so the Drs agreed to put in a smaller size.
At 5:15 PM we were finally discharged from the hospital.
WESA GOING HOME!
After 19 days in the hospital (14 days in the PICU), two full MRIs, two blood transfusions, two CT scans, countless X-rays, two full days of sedation (intubation), a peripherally inserted central catheter (PICC) line, an arterial line, three nasogastric intubation (NG) tubes, two brain electroencephalograms (EEG - 26 electrodes), a heart electrocardiogram (EKG/ECG), one brain aneurysm embolization, an external ventricular drain (EVD), AND a ventriculoperitoneal (VP) shunt we are finally going home! We came into this expecting one brain procedure and he ended up having three. He’ll have the NG tube until his feeds get better and he’ll still be irritable until the blood is out of his ventricles. It’s so hard to leave knowing Theo isn’t 100%, but it’s time for us to go home and try to get back to normal.
Even though we are leaving the hospital, Theo’s fight is not over. He’s on two anti-seizure medications and one medication for the pain in his head and back. He will have 23 therapy sessions a month plus all his doctors appointments with the various teams (Neurosurgery, Neurology, Interventional Radiology, Ophthalmology, Cardiology, Genetics, and Pediatric). It’ll be a lot of work, but we have a great team that want Theo to grow and progress. Everyone is hopeful that Theo will start hitting some of his physical and developmental milestones soon.
Home
Being home is nice, but it means having to remember to give Theo all his medications on time and feed him correctly. I need Theo to be on a schedule because we have so many appointments.
I have a love/hate relationship with the NG tube. On the plus side we can keep Theo hydrated even when he is not interested in eating, BUT I don't want him to become dependent on it.
This is how we feed Theo:
Step One: Make Bottle
Step Two: Offer Bottle
Step Three: Check NG Tube placement by putting some air into the NG tube and listening to his stomach with a stethoscope. If you hear a "woosh" sound then the tube is in the stomach where it should be.
Step Four: Hook up large syringe to NG tube and use gravity to feed Theo.
Step Five: Give meds
Step Six: Flush NG Tube with five mls of water
Step Seven: Clean all supplies and prepare to do Steps 1-7 again in four hours
It's Sunday night and I feel like Theo is doing better. He is still in pain, but it seems to be only if you move him a certain way, and it's not constant.
[Thank you so much to Uncle John and Aunt Tylyn for sending us this care package. It was so nice to come home to a box of snickerdoodle cookies (my favorite), apple cider, and a warm blanket!]
I want to thank everyone again for their continued love, support, prayers, and good vibes! I also want to thank all the AMAZING nurses, doctors, and staff at the OSF St Francis Children's Hospital of Illinois. I am blown away with how much they all love Theo and they want the best for him.
Theo has a tough road ahead, but we are hopeful that the worse is behind us!
