Minimize admissions – maximize quality of life

A quick update.  I’m sorry I won’t be going into it all right now, but I am just too tired and need to get to bed.  Patrick’s respite workers are finding it tiring when here as well.

Patrick is being admitted tomorrow morning to hospital.  A Shunt-o-gram is being done and the idea is that during this admission, the G-Tube and possibly the 24hr EEG will be done as well.  This admission will likely be approx 2 weeks, give or take a few days depending on how everything co-ordinates.

Trying to do as much as possible in an admission to prevent the back and forth between hospital and home.

A lot has gone on and been talked about and discussed yesterday and today and I will try to update when I have time while in hospital with Patrick.  I really need to go to bed now.  I still don’t have everything ready for tomorrow!

We welcome all thoughts, prayers, support and hugs and thank you for them as well.  Visitors are especially welcome to come see us.  Message/text/bbm or call to find out what room we are in.

Goodnight my friends, tomorrow is a long day, be in touch soon!

 

Water in my brain – A Child’s Explanation

Last year I wrote an article about Hydrocephalus for information purposes and to add to the resource guide Sylvia McGrath and I have been writing the past couple years for families/individuals who have chronic illness, learning disabilities and/or special needs.  Section One (A-I) is done, available online and in the Canadian Library Archives.

I was asked to write about it, from a childs point of view.  I chose to take the route of explaining it how I think my son would explain it to one of his friends or to another person in general.  I wrote using terminology/words that I think most would understand.

As we know with most children, there aren’t too many details when it comes to stuff like this.  Things are typically explained as much and in as little time as possible so they can continue on with whatever they were doing.

As I mentioned, since my son has Hydrocephalus, I used him to write this.  I look forward to your feedback and comments.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Hi, my name is Patrick, I’m 14yrs old and I have ‘water in my brain’.  In the hospital, they call it Hydrocephalus (Hi-droh-cef-a-lus).

All of our brains make ‘water’.  The doctors call it, CSF (Cerebral Spinal Fluid).  For most people, the ‘water’ gets soaked up in our bloodstream and then goes away when we go to the bathroom.

For me, the water doesn’t soak up.  It keeps collecting and fills up the spaces inside my brain called ventricles (ven-trick-culls).  When there gets to be too much water in them, I feel a lot of pressure in my head and I get bad headaches.  Sometimes my eyes go funny and sometimes I even fall asleep.

The doctors have fixed it though, so I don’t feel pressure all the time or get headaches all the time.  They put 2 shunts in my head.  A shunt is a little thing they put in my head that has a dial and some small tubes attached to it.  One tube goes from the dial into my ventricles, the other goes from the dial down into my stomach.  You can’t see them when you look at me, they are underneath my skin.  The doctors set the dials, and when the pressure in my head gets too much, the shunts ‘turn on’ and take the water out of my head.  The water gets pumped down to my stomach where it gets soaked up there instead of in my head.

I go for Cat Scans (CT’s) once a year to see how my ventricles look.  It’s a big round machine that takes pictures of your head.  You have to lay very still when they take the pictures.  It doesn’t take long at all if I don’t move.

If the pictures show my ventricles are bigger than normal, the doctor will do some other tests to make sure my shunts are working ok.  If they look ok, then I go home and come back in a year so they can see how I’m doing.

 

 

Written Oct/11 by:  Renee MacLachlan

Update 4 – One of those appointments

Monday evening, shortly before I left for the night, I happened to walk by the Nurses station and was waved over because Neurosurgery was on the phone.

After speaking with her for about 20min on the phone, the plan was to do a Shunt Series that night (if they could get one) or the next day.  We didn’t expect to see any issues since it seems that the programmable part of each of the shunts is the problem, not the rest of the shunts.  After having the O.R. closed down today due to not enough anesthesiologists and  Dr. Ranger not being able to get any O.R. time from anyone else, surgery was sure to be a go for next Wednesday.  Sooner, if he deteriorated alot and quickly.

Shunt Series was done Tuesday morning, all was good, as expected.  The rest of the day was waiting to see if anyone from the teams would be around to see us.  No one came.

Patrick has been getting more symptomatic since he’s been there, more so since the setting adjustments.  He has his moments where he looks as if nothing is wrong, then…the discomfort and headaches come.

Today, Wednesday, Dr. Ranger and a Resident came to see us this morning.  After some discussion more of the plan seem to come together.

Valves (programming parts) have been ordered.  Typically they are able to keep Codman Shunts in stock now that they are easier to get, but…of course there’s a but…Patrick’s are specially made and have to be ordered.  They will take a couple days to come in.

As I mentioned previously, since she is not able to get some O.R. time this week, surgery will be done next Wednesday.  A CT will be done on Friday to see how things are looking as well.

Today was a rough day for Patrick.  This afternoon, a headache came on so fast and so painful, Neurosurgery had to be paged and Codeine was ordered for him.  You can tell when he is discomfort.  He gets so agitated and fidgety, his pupils gets small, he repeats himself multiple times and seems to go into a daze at times.  Those are the main symptoms.  He had been given Tylenol not to long before this and it doesn’t help at all.  He even tells me before hand that it doesn’t help.  This afternoon, he was in tears from the pain!

He’s developed a tolerance to the pressure and pain from dealing with it for so many years, that when he says it hurts, you KNOW he’s in pain.  After the Codeine kicked in, that helped SO much!  What a relief!  Before I left this evening, his headache was coming back.  He was given Tylenol and I’m hoping that he can get through tonight without needing the Codeine.

I know it’s a long wait.  We were initially given a choice of going home and coming back next week for the surgery, but because his headaches are becoming more frequent and his symptoms more often, he is going to be kept admitted as everyone feels better that if he deteriorated quickly, things could be done much more quickly having him already here.

This afternoon proved that point.  Had he been at home, I had nothing here that could have helped him get through that pain.  I would have ended up bringing him back in, and likely would have had to sit in emerge for hours before something was able to be done.

I feel comfortable knowing Patrick’s surgeon is looking out for him and doing her best to get him better.  She knows Patrick’s history and how difficult and complicated things get with him.  Other Doctors who are not familiar with him, unfortunately don’t always listen or believe the facts you give them regarding your child and alot of time is wasted.  Because Patrick, as we know, does NOT go ‘by the books’, some Doctors won’t get that.  That’s  happened before, and thankfully the one this weekend was able to understand and learn quickly.

Although it’s going to be a long week waiting for the surgery, he is in the best place.  It will likely take a few days recovery, hence the week and the half more in hospital till we can go home.

Thank you everyone for your kind words, thoughts, prayers and hugs.  It’s appreciated very much!

Update again soon,

Have a great evening!

 

update 3 – one of those appointments

Today was a long day.  Ever notice how slow time seems to go while you’re sitting and waiting?  Especially in/at a hospital?

Waiting for updates, results and to find out what the plan is going to be, time went by slowly.

Patrick did have his ultrasound this afternoon.  He did great!  Ultrasound was on his abdomin to make sure there were no pockets of fluid, cysts or the like that would/could be contributing to the issues with the shunts.  My understanding is that all looks great!

Finally just before 630pm, I was heading down the hall to get some cold water for Patrick, when Marilyn (Patrick’s nurse today) waved me over.  Dr. Ranger was on the phone.

It really makes Dr. Ranger think when it comes to Patrick.  Nothing is typical! Absolutely NOTHING!  He doesn’t follow any books, documents, research…anything.  Patrick is his own book, and he keeps writing new chapters for everyone to learn about and learn from.

It seems the thought and plan is/will be as follows:

  • Both shunts appeared to work during the shunt-o-gram, but the left was sluggish
  • They orginally thought they would replace the left shunt
  • Since the re-programming and having no change in his ventricles, it appears now both shunts are not working, but…it seems the programming valves are the part(s) not working now
  • Do they change one and see how he does?  If he doesn’t do well with one, then go in again and change the other.
  • Do they change both at the same time, set him back to 60 where’s he’s been for the past 6 yrs or so and see how he does?

Patrick’s shunts are not ones that are kept in stock.  They are special shunts and have to be ordered.  They will take a couple days to arrive.

Reading this, you think it all sounds so simple.  It’s not as easy as it sounds, trust me.

One last test to be done before surgery, a shunt series.  A Shunt Series is just x-rays of the complete shunt(s), top to bottom.  Checking to make sure there are no breaks/kinks etc…  It will likely be done tomorrow.

So we wait again.

Dr. Ranger lost her O.R. time this week because the hospital decided to close down the O.R. on Wednesday (her day) this week.  So the only time she can get is time someone else will give her, of their time, or to try to fit in on an emerge list.  She can guarantee surgery next week for sure, but she is going to try to see if she can get some time from someone somewhere and do it this week.

If she isn’t able to get time this week, and if Patrick is doing ok clinically, we will go home and come back next week, when she has time scheduled.  I’m really hoping to get this done THIS week!  Before School!!

Either way, it appears he will not be making the first day of school.  He’s going to be upset about that.

Like I said…now we wait……again!

I’ll keep you posted.  Thank you everyone for your kind words, thoughts, prayers and hugs!  It’s truly appreciated.

Have a great evening! I’m off to bed!

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…

 

Cont’d – One of those appointments

Well, you know how Friday went, or rather didn’t go.  Now here’s the rest of the story.

Shunt-o-gram was scheduled for 1230pm Monday.  A phone call from Paul in Nuclear Medicine informs me that Anesthesia had no information or knew about the test being done.  It is rescheduled for Tuesday, the same time.

Another call from Paul shortly after informs me that Dr. Reed (the Dr they want doing this, and frankly me too) will not be in hospital Tuesday afternoon.  Shunt-o-gram rescheduled again to Wednesday for 1pm.

NOW the fun began when we arrived at Nuclear Medicine on Wednesday.

Anesthesia arrived thinking Patrick already had an IV in place for sedation.  We came from home, as outpatient, obviously he had no IV.  There comes the next big undertaking.

It is unbelievable how strong Patrick is! It takes at least 3 to hold him while they try for an IV.  Poor guy has Mom’s veins, so they are small and collapse, which doesn’t help of course. FIVE tries to get an IV this day.  They had one at one point, but they didn’t secure his hand/wrist enough and they tried to inject something to calm him down, he fought and moved and the IV came out.

Finally after getting an IV and using half a roll of tape to secure it to him, we were set to do the test.

The next issue was figuring out where in the shunt the needle should go.

Let me take a short side-track here and try to explain what happens for a shunt-o-gram.

Shunt-o-grams are done in Nuclear Medicine.  It is a sterile procedure and everyone in the room wears masks and such.  The area where the needle goes is shaved down, cleaned and sterilized.  It typically involves inserting a butterfly needle into the reservoir of the shunt (depending on the type of shunt, some are inserted in the programmable area apparently).  Pressure measurements are taken and some CSF (Cerebral Spinal Fluid) is taken and sent off for testing also.

A small amount of radio-active material is then injected into the shunt.  He is then moved under a machine (similar to one used for bone scans).  As it flows through the tubing of the shunt, the flow is watched on a screen and pictures are taken periodically as it goes through.  This screen is a white background and the material shows black as it travels through the shunt.

They are watching that it moves through well and disperses well at both ends.  If you begin to see dark ‘blotches/spots’, it could mean a blockage.

After checking previous x-rays and scans, it was sorted where Patrick’s reservoirs were located and the test began.

Keeping Patrick sedated is another story in itself.  Since last fall, it seems Patrick metabolizes those drugs quite quickly.  It takes A LOT to sedate him and keep him sedated.  For a 14yr old boy who is only 92lbs, it has been taking more than an adult dose to keep him out long enough to do many of these tests.  For this test, 3 drugs were used, the main one being Propafol.  He needed 80mg more than they would normally give an adult (which is 200mg) to get him through the test.  Wow!

Thursday being called in to discuss the test, resulted in finding out that both shunts appear to work, although the left one is sluggish.  Both dispersed, albeit slowly, but they did.  The tubing is intact and in suitable places. (after the shunt-o-gram, they sent him for a shunt series – an x-ray to see where the tubing was and where it ended)

So the question is.  If both shunts are working, his ventricles should be normal size.  If one is working better than the other, then that ventricle would be smaller, but that’s not the case.  ALL of his ventricles are enlarged.

Update:  Patrick was admitted to hospital yesterday (Friday)

More to come…

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?