Time to Begin Again

I haven't blogged in over 3 years. That's one thing home schooling does for ya - you're just so busy, you don't have time for much else. I am really hoping to begin again, especially as it pertains to Toby and his medical stuff. This is great more for me than anything as it keeps a journal for us to look back on.

Photo Credit: CT Photo Memories

Today's update is because we are embarking on a new journey with Toby's shunt and an extended hospital stay. This is something we haven't experienced since he was 5 or 6 years old.

Here's the longer medical explanation with photos:

Toby's shunt drains into his peritoneal cavity. For some reason the intestines, etc. weren't absorbing this extra fluid. It seems like it has been building up for a few months, as he had gained around 4 lbs. of weight, and also began to be very uncomfortable. His belly was getting larger and larger. He had been sick around Easter this year, and we had seen some increase then. However, his shunt failure symptoms (symptoms that it had been backing up in his brain) had subsided and it was safe to assume that the intestines had caught up and all was well again.

It wasn't.

This week's synopsis:

I do have to chuckle a bit here because it feels like FEAST or FAMINE around here in regards to spending time at NCH. We aren't there for months, and this week we spent every day downtown except one. That day we went to the NCH location in Lewis Center!

Monday, June 25th - saw Complex Care - they weren't much help honestly. It wasn't his regular doctor, and I felt like she sort of blew it off. I had scheduled to see her last week while we were at Gull Lake family camp because I needed them to trouble shoot and think through all the possibilities - that's what they are there for. Instead, mom has to do it - that's okay, I'm used to that.

Tuesday, June 26th - brief abdominal x-ray at NCH close to home

Wednesday, June 27th - saw Toby's ENT doctor. He has had a really large air leak around his trach. His ventilator was alarming a lot, and I thought maybe, just maybe he was swallowing a lot of air, and that was why his belly was growing at such an alarming rate. They did increase his trach size from a 4.5 Ped Shiley to 5.0 Ped Shiley.

Thursday, June 28th - this day was a the whopper. We had an appointment with the colorectal team about his bowel program. My thinking was (as it has been SO often in the past), he had a lot of air in his intestines or his colon was backed up. It's not. They sent us for another x-ray (apparently Tuesday's wasn't good enough). I laughed because it felt like musical doctor's offices.

Off to colorectal clinic

Down to x-ray Back to colorectal Up to neurosurgery Down to ultrasound

Back up to neurosurgery

Thankfully, it was neurosurgery that figured it out and the ultrasound. His pseudo cyst (fluid in his abdomen) from April had grown considerably. We were given instructions to go home and wash with hibiclens (special soap for shunt surgeries) and not to eat after midnight. Friday, Toby had surgery to externalize his shunt, and the neurosurgeon also drained about 600 ml of fluid from his abdomen. That's 30 ounces - that's almost one quart of fluid!! No wonder why his stomach was so LARGE.

So, the shunt tubing is actually much much smaller in diameter than I had imagined. It comes out as his neck for the moment:

That tiny white tube is the shunt tubing, and
then it's attached to the larger tube. 

Other than Toby saying it's really sweaty under there, and it's a bit painful from the incision, it's okay. This tube is hooked up to a drain that MUST be below his shoulder in order to drain or it could back up in his brain. Every time he sits up or moves dramatically, we have to clamp it, move him, and then remember to un-clamp it again.

What is mind blowing is - that fluid is CSF - it's spinal fluid that his brain is making. What is even more mind blowing, is watching how much more it drips when he coughs or gets excited over his video games! It's amazing to know how God created our bodies - just amazing.

That clear tubing coming out attaches to the reservoir in the photo
below (left) then drains into the bag (right photo).

So, what's next? Waiting...waiting, and WAITING!

They sent off some fluid to be tested. It takes 5-7 days for it to grow, and it has to happen slowly. They are looking for some type of infection from his abdomen that may have caused it to stop absorbing the CSF (cerebrospinal fluid). The other reason why it could have stopped is the surface area in the peritoneum is much less from past surgeries (scar tissue has built up), and then we have to discuss our options. They can reroute the shunt tubing to the heart (called a VA shunt) through the jugular vein or they can do a more extensive surgery and remove some of that scarring and create more surface area in the abdomen. Obviously we have much to discuss and pray over. In the mean time, Toby is getting IV antibiotics, and we just wait.