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!

 

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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 6 – one of those appointments

It’s been a few days since I’ve done an  update.  I’m so tired when I get home in the evening and getting up so early in the morning.  I’ve been setting my alarm for 530am so I can get used to being up when he goes back to school.  I’m at the hospital just after 730am and I try to be back home around 8pm as long as nothing is going on.

At the last update, we were waiting for the new valves to come in so they could get into surgery and fix them.  We did go home for the long weekend.  Patrick did alright, nothing major to warrant an earlier return to the hospital and thankfully didn’t need to give him any codeine over the weekend either. 🙂

Tuesday afternoon we went back to the hospital to get admitted again.  The valves arrived Tuesday and surgery was Wednesday, first one in the morning.

I’m going to try not to go into too much details, I know for some it is over-whelming and difficult to understand.  If there are ever any questions about anything I have written, please feel free to email/comment and ask.  I will happily answer.

Surgery Wednesday morning went well.  They took the full 3hrs and a tad more.  Both valves were replaced as well as the upper end of both shunts.  Testing during the surgery indicated no issues with the bottom ends.  At the upper end, the left was blocked/plugged and the right was likely partially plugged as it was quite slow, hence both got replaced.

Both shunts are set at 60, where they had been set for the past 6-7 years.  For those interested, the settings range from around 30 – 300.  The lower the number, the more it allows the shunts to drain the ventricles.

Patrick came out of sedation and recovery quickly.  They were actually paging us throughout the hospital to get us to go back to post-op.  We didn’t hear the page even though we were just in the hallway talking to Dr. Ranger.  We went in and were able to get him calmed down.  The nurses were amazed apparently at how well we communicated and got him settled.  They said they were getting alot of ‘no’s’ and didn’t know what he was saying.  Understandable.

The days following surgery have been up and down.  A CT was done Friday morning.  Results were that the ventricles were a ‘little’ smaller, but still generous in size.  They were heading in the right direction.

Friday afternoon, Patrick started to become symptomatic again.  Lethargic, uncomfortable, fidgety, head pain, slow responding and there was ‘swelling’ at the shunt sites.  The swelling is actually fluid, not swelling.  He was having times of alertness, smiling and such, but then would go down and have the aforementioned symptoms.  He had slight elevated temps on Friday, but none since.  His vitals have been good, blood pressure, temps etc…  Saturday he began having longer periods of lethargicness and periodically breaking out in rashes.  His chest was sounding crackly and a bit rough with a phlegmy cough.

Too make a long story short, as a result of how he’s been this weekend, another CT has been ordered for today.  We’ll see what the CT shows, pharmacy is looking into how his meds are made up and what’s in them to see if that might be the cause for the rashes (they don’t think so), we’ll see what Dr. Ranger says tomorrow (she’s going to scratch her head again and sigh wondering why this is happening when he has 2 new, great working shunts).

It’s frustrating when people (Dr’s/Residents etc.) come to see your child who have never seen them before and think that because what’s happening isn’t “typical” or “by the books”, that it’s probably nothing serious and to ‘give it time’.

It’s frustrating when explaining to them about your child and they look at you as if you are reaching for ideas and/or looking for something to be wrong, when in fact you are trying to tell them what IS typical/normal for your child!

It’s frustrating when they talk to you as if you know nothing and can’t understand what they are saying/explaining!

Thankfully, this afternoon the adult Neurosurgery Team Resident that came, remembered Patrick from last fall and all that happened there.  He remembered seeing Patrick a couple times and hearing about his case.  I think Southwestern ON heard about him!  He said it was quite the interesting case.  I’m thankful he listened to us and understood what we were saying and explaining and didn’t try to brush things off or us off.

I’m glad that I am a great advocate for my son.  I ask questions until I get answers I’m satisfied with and understand.  I work with the Dr’s/Nurses to decide what the best plan of action should be.  I keep them informed and help out as much as possible.

I know things will get sorted with Patrick this week.  Until last fall, he had gone 6yrs or so with no pressure issues, and now if this is what’s happening again, we aren’t even a year yet since the last.  I’m hoping this isn’t a sign of things to come.

I’m going to post a Poll asking your thoughts on Doctor/Nurse – Patient/Family Communication and how you feel about it based on personal experience.  I’m quite curious.  I hope you will take a quick minute to answer it.

Thanks to everyone for their continued thoughts and prayers for Patrick.  Again, it is truly appreciated.

Patrick asked for Bruiser to come visit him tomorrow.  I have given Bruiser a bath tonight and will confirm with the Nurses it’s ok to bring his dog up to see him again tomorrow.

Patrick didn’t want me to leave tonight.  I told him I had to pack up some things for him and to bathe Bruiser if he wanted to see him tomorrow.  He seemed ok with that.  Dave, Patrick’s father has been staying the night at the hospital so I can go home and sleep.  He has been up since the week of his Shunt-o-gram and likely will not leave until Patrick is ok and able to come home.  If Dave wasn’t up here, I’d be at the hospital 24/7.  Someone needs to be there all the time.  It’s mandatory in most cases.

I appologize if I seem all over the place here, I’m tired and heading to bed.

More to come…

 

Update 5 – one of those appointments

Change of plans…

The past couple days have been fairly quiet.  Not much really can be done until the new valves for the Shunts come in.  Can’t really do much else either until there is O.R. time available.  Should he deteriorate quickly, he would be taken into the O.R. of course and given another type of Shunt, if his aren’t in.

Patrick is still getting heachaches, but none like the other day thankfully.  He has been going down to the Child Life Playroom and doing some crafts for about 20-30min depending on how he feels, which is good and gets him out of his room for a bit.

Today a Ventriliquist was visiting on the floor, her name was Sue and she brought Boomer the Mouse with her.  She came and saw Patrick twice today, he liked that and thought she/they were pretty funny.  Boomer told some jokes, made some funny comments, asked Patrick questions and sang a few songs ranging from The Lazy Song by Bruno Mars, The Black Eyed Peas to Kesha.  He liked the singing.  Patrick likes Jeff Dunham, so it was no surprise he liked Sue & Boomer.  Thankfully she caught him feeling not too bad to enjoy it.

This morning at 7:30am was Patrick’s CT Scan.  Dr. Ranger and Dr. Pinkoski were by afterward to see how he was doing and discuss the results.  It was nice and surprising to hear Patrick’s ventricles have come down a little.  They still are large for him, but down from previous, which was good news.  What does that mean?

It means, regardless what the scan says/shows, the programmable valves on his current Shunts are not working properly and still need to be replaced.  The valves will arrive Tuesday and surgery will be Wednesday.  Again, if he has issues and deteriorates in the mean time, he will go in to the O.R. and have different shunts put in.  We are all hoping he can hold off till his come in, as they are specific for/to him for a reason and have been working great for him the past 6-7 years till now.

The change in plan is the following:

They were going to allow Patrick and LOA (Leave of Absence) for a night, to go home and get out and away from the hospital for a little bit.  My concern was if he had another headache like the other day, I have nothing here to deal with that kind of pain for him.  They said they would send a script home for codeine just in case.  At that point I felt ok with that and being away for one night.

The more I thought about it, the more I thought perhaps going home for the weekend would be a good idea.  It would mean having to be dishcharged instead of having an LOA.  The LOA’s are only 8-10 hrs typically, but one overnight was agreed for Patrick.  Anything longer requires discharge.  At first, I didn’t want to go through the whole admitting thing again, or sit in emerge if something happened while at home.

I decided it would be ok and good for everyone to go home, sleep in our own beds, no interruptions, comforts of home, cooked meals etc…and I had the script to fill if he got another bad headache.  Of course there were stipulations, obvious as well, he was to be watched, if he deteriorated get him in, if he had bad pain again give him codeine and bring him in if necessary…AND…we had to be back Tuesday after lunch to be admitted again and prepped for surgery and see anesthesiology.  We can sit around at home and be more comfortable.

I am ok with him home and having the script, just in case.  I know him and what he’s like and what happens with him well enough and Dr. Ranger knows I am good that way, that if i have concerns, I will take him in.  If he goes into emerge with pain that bad in his head,…we won’t be waiting long!!

So…we are home, although temporarily, we are home!  Script filled and relaxing.  Sleeping interruption free and being comfortable.  🙂

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…