They are requesting a shunt revision

We are currently in the hospital at CHLA. We still have not figured out what is causing his constipation but his eyes are now permanently crossed and it seems like he's not really using his right eye. 

Neurosurgery wants to replace the shunt in his brain. Yesterday in the ER they did a CT scan.   He would not sit still long enough for a short MRI and it would take too long to get it together for a sedated MRI. It showed the ventricles in his brain more dilated than his last scan 2 years ago. They are concerned that the shunt has failed. They want to do the surgery this morning. 

Mike and I have a lot of questions we will be asking the team at rounds in about an hour. I posted on the M-cm FB group asking if anyone has had such minimal symptoms of shunt failure. Typically symptoms are vomiting, constant irritability from a headache and complete lethargy. Ian goes in and out of these and is most often easily distracted by an iPad. Although he does still have bouts of uncomfortability while he's watching. It is not as bad as it's been when he's at home. They are hydrating with an IV but he has not passed any urine or stool since we arrived about 12:30 yesterday. 

 One family said they had and only eye crossing and the revision instantly corrected the eye crossing. If not fixed quickly it can cause blindness. I do know this. 

But another very interesting bit of info I found in my desperate search in the early morning hours is that constipation might also cause shunt failure. And if you fix the constipation, you fix the failure, without brain surgery. 

I've requested the 3 doctors speak: Neurosurgery, Gastroentinology and Neuro-ophthalmology. They are all amazing doctors and I truly believe they will figure it out with us. 

Because they have prepped him for surgery, he is NPO which is nothing by mouth since midnight. It has been tricky but def could have been worse. Thank goodness for the pink iPad, Barney and Thomas. 

I know this is a lot of info. I need you all to know why we are cancelling everything. And you all are so important in our lives.  It's easier to update the whole. I'm also updating my blog with this message. We will keep you all updated as this unfolds. Thank you for your positive energy, prayers and whatever you might offer in thought to help my sweet boy get through this. 

 wants to eat. He's also had a couple banana waffles last week and  ate one handful of Cheerios last night. I also got him to drink 3/4 or a banana/strawberry/kale smoothie Sunday.  Luckily I'm able to get him to drink some water although we won't drink as much as he usually does. 

His stomach is not distended, or hard, nor is it sensitive when pushed on. His temp seems to be on the colder side, except when he's having the flush moment. Not sure why. In general when he sleeps he pushes all the blankets and pillows off the bed and prefers to sleep just on the sheet with nothing over him. 

One other thing I noticed is that his hair seems to be falling out more than usual. Not sure how this could be connected, or if it's coincidence. 

I've been literally going crazy over this. Mike and I have been searching the web with his symptoms to no avail. He regular pediatrician was out last week so we were able to see her yesterday. She ordered blood work which we are waiting for the results. Should be back any minute.

 I should have insisted the ER do blood work as well as an ultrasound of his gut. But I was so frustrated when he perked right up with a device I gave him so they could do his vitals. I also should have insisted the Attending come in to see us, rather than just the freakin' resident. "Mom, have you heard of Mirlax," was her fabulous suggestion. I was not my strong and determined self that night. I've not been sleeping and have been so stressed about this whole thing. 

We were able to see Dr. Gill, his amazing Osteopath, this morning. She feels his colon was blocked up as well as much of the rest of him. I'm sure he's bound to have a lot of bodily  response to this past week. 

At this point all we can do it wait and continue the search. Dr. Gill suggested we get a urine sample. Which I will try to do today. 

After the blood test results I'm hoping we can move to a stomach ultrasound to explore his "sick and sad tummy". 

I will keep you all abreast of any new info as I receive it. Until then please cancel all of