One of those appointments


Have you even had one of those appointments where it was just a routine follow-up and it turns into something more?

Believe it or not, it happens!  I know there are quite of few of you who completely understand what I’m talking about.

Yesterday was a regular follow-up for my son with Neurosurgery.  After spending 20 days in hospital last fall, going through 6 surgeries in 7 days (the biggest being a cranial vault expansion), all for pressure related issues in his head, he has been followed closely of course.

After hearing that Patrick had been having periodic headaches the past little bit, still being tired a lot, taking longer in responding to questions, noticing some different eye movement than usual and him following asleep sitting up Wednesday afternoon quite suddenly, Dr. Ranger thought it best to have x-rays done to check the positions/settings of his programmable shunts (both were set to 60 before leaving hospital last fall), blood work to check for any metabolic issues and CT to see how his skull and ventricles were looking.

Let me interject in here that Patrick has been good.  He’s not been sick.  He’s eating and drinking no problem, if anything he’s been drinking a lot more specifically after supper.  Patrick was not symptomatic yesterday, nor was he today.  He was fine.

Again, after explaining about the potassium issues he’s had since March, and the adjustments of his blood pressure medications and trying a low potassium diet, as well finding out that his kidney function has decreased more in the past year (they are now working 60-70% normal), she included these tests with all the others she wanted.

After missing our ride home with Para-transit as clinic was running behind, we did the blood work first, then x-rays, followed by CT.  We were out of the hospital and waiting for Para again just before 130!  Thankfully Para was able to find someone and we didn’t have to wait forever to get back home.

Patrick was great Thursday, despite the last minute tests thrown at him.  You should have seen his face when Dr. Ranger mentioned blood work!! He did amazing though!  So proud of him!

Patrick was great today!  Eating and drinking and laughing…being Patrick!  He was packed, ready and excited to be spending the weekend with Kirk & Jen and going to Build-A-Bear!

Then the call came from Dr. Ranger.

His blood work looked good.  His Urea was up slightly, but overall, everything looked fine.

X-rays determined that one shunt was still at 60 and on the other shunt; the setting somehow had gotten to 30-40.  Regardless, that wouldn’t be a contributor to the results of the CT scan.

The CT showed his skull since the cranial vault expansion was still looking good.  It had not started to fuse yet (it shouldn’t for a least a year), which is a good thing in this case.  It also showed though, that his ventricles had increased apparently a fair bit from his last CT.

Let me toss in here, that the lower setting of the one shunt, as I said, would not be a contributing factor because the lower the number, the more it allows the shunt to drain the ventricles.  Therefore, with the lower number allowing for more drainage, his ventricles were still large.

Dr. Ranger is concerned there may be a block in one of the shunts; therefore she wanted a Shunt-o-gram done.  The test is done in Nuclear Medicine.  It is a sterile procedure and involves a tiny butterfly needle being inserted into the reservoir of the shunt and injecting a small amount of radio-active material into the shunt, then watching it on a screen flow through-out it.  They will watch to see that there are no areas where the radio-active material ‘pools’, which would indicate a block of some sort.  During this procedure they will check the pressure and also take some CSF (cerebral spinal fluid) samples and send them for testing to see if they grow anything, which could indicate infection.

The Shunt-o-gram didn’t go today.

Patrick has gotten too big and strong to be held enough to prevent any movement during the procedure.  We tried.  Trust me.  He wouldn’t be still even for them to shave the hair off the small area over the reservoir where the needle would be inserted.

Since the shunt-o-gram last fall was such a mess and traumatic, they didn’t want this to be another episode.

No one was available to come and sedate him enough to get through it.  Dr. Ranger wanted him admitted till Monday, when they could do it with sedation.  She is concerned he will deteriorate and if he does, it will be quickly.

After some discussing, she said she would be ok with him coming home for the weekend and returning Monday for the test, but there were stipulations with that of course.

1 – It helps we live barely 5min down the road from the hospital, so that helped.

2 – He had to stay home.  He can’t go away anywhere, so he can be watched for any signs of deterioration.

3 – Dr. Ranger knows; if he does become symptomatic, I will not hesitate to call and bring him into emerge if he does deteriorate.

4 – The fact he is well today and not showing signs of deterioration and was the same yesterday, helped as well.

Sunday night at midnight, Patrick will become NPO (nothing to eat or drink) in preparation for sedation for the shunt-o-gram on Monday.

If the test shows a block in one of the shunts, he will be admitted immediately and booked for surgery.

What a couple days it’s been!  I’m tired.

So you see, it’s started out as a regular appointment and turned into ‘one of those’ appointments. J

Have you had appointments like that?

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One thought on “One of those appointments

  1. Yes the other day a simple Sinus infection for my grandma turned into a an xray appt optometrist appt drs appt again and last night she was
    admitted for possible Cranial Arteritis ( Inflammation of the cranail arteries and i just got a phone call from my aunt that she could have also suffered
    a series of mini strokes…Pfffttt Why did someone not catch that she had massive intercranial and ocular pressure for 3 weeks then came double vision
    hugs hope patrick is ok xoxo

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