update 2 – one of those appointments

Upon arrival on Friday afternoon, the idea was to program both shunts and turn them down to 30.  The thought was that by turning them down, that will allow them to drain the ventricles more.  Well, no one could find the device to turn them down.  The doctors went back to University Hospital to get the one from there, and didn’t come back due to some emergencies there.

Friday morning another from Neurosurgery comes around thinking the shunts had already been changed, and they hadn’t, so he set about looking for the case with the device.  With the change to the new hospital, it seems not everyone knows where everything is yet!

After calling the Nurse Practitioner at home hours later, they knew where the case was and had security go retrieve it in PMDU.

It’s time to re-program the shunts.

First try – the left goes down to 30 – all good!  The right – ended up somewhere between 50-60.

Second try – Just the right shunt – ends up at 90!

Five more tries later – the right shunt won’t re-program.  It’s stuck on 90!

You should know that between each of these programming times, an x-ray needs to be done to verify the setting is where it’s supposed to be.

Patrick’s own Neurosurgeon was going to come in and try to see if she could get it changed, but it seemed that it was decided to keep an eye on him the next couple days and see how he was doing.

As Saturday afternoon progressed, Patrick started becoming a little more symptomatic, more headaches, more tired, his left eye is turning outward more, off in a daze at times etc.  He was still smiling and laughing, but the other symptoms were coming through more.

Saturday night, they did bloodwork in case he declined quickly and had to go to the O.R.

Today is Sunday now.

Patrick still appeared to be as he was yesterday afternoon.  Then this afternoon, he got very agitated and upset.  He kept asking to go for a CT and/or x-ray and for me to call the doctor.  He said his head was hurting and when I offered to get him some Tylenol, he told me that it wouldn’t help.

I told him we had to go through the Nurse first, that I would call her; he could tell her what he told me and then she would call the doctor.  He was pretty upset and agreed.

The Nurse came; he told her he needed to go for a CT and that he wanted to call the Doctor.  She was able to get him to take some Tylenol in the meantime while she called the Doctor.  He was ok with that and seemed to make him feel better knowing she was going to call them.

I gave him the Tylenol and about 20min later she returned saying she’d spoken to them and that they were going to order the CT.  Within an hour, we were downstairs having it done.  Then the waiting began for Neurosurgery to come speak to us.

When they did, and after looking at the CT scan, it seems there is no change to his ventricles.

With a setting of one at 30, that ventricle should show some improvement.  It doesn’t.  Neither has changed.

It appears there is an issue with both shunts.

The Doctor said tomorrow they will have to get on sorting it out and fixing them.  He is an adult Neurosurgeon and the only team that was on this weekend.

So, tomorrow when ‘our’ team is back, hopefully the ‘fixing’ process will begin.

More to come…



One thought on “update 2 – one of those appointments

  1. I know this is an old post, but wow I really waentd more info and someone recommended our site. Our first preemie (now 18 months)was a 27 weeker, 2 lbs. 13 oz. and did beautifully. Our second preemie was a 25 weeker, 1 lb. 12 oz. She has been quite the opposite of her brother. At 8 days old she had emergency NEC surgery in the middle of the night, which wound up only being a perferated bowel, thankfully!! Then, she started having issues coming off vapotherm. So they decided to operate on her PDA (open valve in the heart). Still had issues. Found out she has mild ROP. Then, they decided to do a head ultrasound again to see if it has something to do with her crazy desats and bradys. We found out yesterday. Her original 2-3 grade brain bleeds are now a grade 4 with hydrocephalus. She is scheduled to have the ventricular access device put in. They already have talked to us about shunts as well. They told us she does have brain damage, but obviously at this stage it’s impossible to know if it’s minor or major. I just started reading through your blog, but I def. will keep reading. It’s good to hear from others who have been and are in a similar situation. Thanks for writing all this. Someone on It’s a Preemie Thing recommended your site, just in case you wondered. 🙂

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