When what you prepared for isn’t what’s happened

I know it seems like forever since I’ve posted. Life has been busy with Patrick quite ill. He is on his 2nd admission since January and we are now heading into week 7 of this one. He is not looking at being able to go home till some time after the end of May.

Last year, after Patrick’s Wish Trip and before Christmas, I finally did something I should have done years ago. I created a ‘fan page’ for Patrick on Facebook. It was an easier solution for people who follow him and see what he’s up to and how he’s doing.

I just wanted to post this quick update that we are still here and hanging in. Patrick has been quite seriously ill. All the updates have been posted on his page if anyone would like to follow along.

https://www.facebook.com/notbythebooks

Watch for more…thanks everyone for your support!

Have an awesome weekend!!

What’s been going on?

Yes, it’s been a while since I’ve done an update.  A lot has happened in that time frame as well.  There is much to update!  I will do my best to get those posted over the next few weeks.  Thank you for your patience!

Let’s begin with where we left off; Patrick was going in for some tests and being admitted with the understanding that some procedures were going to be done.

For the sake of trying to get caught up on everything in a short time span, I will just be updating as an overview of what happened.

Patrick did end up having the upper end of one of his shunts replaced as it was blocked.  During the course of this surgery, another issue came about, in that when trying to put the bottom ends of his shunts back in his abdominal cavity, they had a difficult time on one side due to so much scar tissue on the inside of his abdomen.  When they finally thought they found a spot, a huge gush of fluid came pouring out!  There were able to catch most of it (enough to almost fill a coke can we’re told) and send it off to the lab for testing.  A nearby general surgeon was brought over to see if he would take a look inside Patrick’s abdomen to see if he could see where this fluid came from and if there was more anywhere.  He brought all his equipment, scopes etc over to Patrick’s OR room and did an exploratory basically.  He found nothing that might explain about this fluid.  He did locate and area that they could safely and easily re-insert his shunt and all was closed up and finished.

Patrick also did have a g-tube put in.  He had to have a ‘temporary’ tube in for the first 3 months till it healed, then was replaced with a ‘mickey’ which is replaced every 3-4 months now.  What a huge difference to his quality of life.  He’s been able to get his nutrition without it causing him to be any more tired than he already had been.  He has adapted well to it and asks to be hooked now.  What a trooper!

After a few weeks in hospital and getting used to the tube feeds and learning about it all, Patrick was able to go home in February, with a number of follow up appts.

Follow ups included:

Neurosurgery – usual follow up after surgery and admission

Nephrology – usual follow up for blood pressure and blood work to keep an eye on kidney function and potassium levels

Enteralfeeding – follow up for g-tube and any feeding issues

Dietition – make sure recipe for feeds was working for him, getting him all he needs to have and making sure it was balanced enough to as not to cause increases in his potassium etc…

Neurology – follow up for the seizure medication Patrick is on and how it’s working.  Since this time, we have been currently decreasing it and he is almost completely off it now!

A consult with Toronto Doctors at Sick Kids Hospital was put in as well with their plastics team for their thoughts on another cranial vault expansion .  That appointment was for Oct. 10th, 2012.  (update later)

Over the course of the next few months with follow ups and blood work it was discovered Patrick’s blood sugars were dropping within 2hrs of a feed.  They should go up.  So endocrinology was brought in as well for follow up appts and blood work.

Well, there is a start…more to come…

Thanks for your patience and everyone’s support and love for Patrick and our family!! We truly are blessed to have so many wonderful people in our lives.

Thank you!

HUGS

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!

 

Improving Quality of Life

Many of you are wondering how the meeting with supportive services went this morning.  Here is a bit of a run down of what the plan is and what’s happening.

 

Let me begin by telling you, it was decided this morning’s meeting would not cover any of the difficult palliative issues at this time.  Those talks will happen, but today the priority was pain management and quality of life concerns.

Patrick’s pain seems to be managed fairly well with the medication he’s on.  He’s taking Gabapentin and Valproic Acid.  He doesn’t complain of headaches as often as he had been, which is good.  Tylenol is being used when needed to help take the edge off at least.  It really doesn’t do much for him honestly and thankfully is not needed as often at the moment.

As for quality of life, fatigue is making Patrick’s not so good.  He is awake and alert for periods throughout the day, but they don’t last and he tires easily and quickly and falls asleep.

What is causing the fatigue?  We wish we knew.  The Doctors wish they knew.  Could it be the meds?  Possibly.  Could it be the increased pressure in his head? Sure.  Could it be the seizures?  Again, it’s a possibility.  The fact is, he has been like this before when seizures and medication weren’t in the picture.  Both the seizures and the meds won’t help it indeed.

It’s so difficult to write so much out and so that many will understand.  It’s easier to inform verbally, but I will do my best.  I have considered doing videos instead of writing for updates, I may still, we’ll see.

Fatigue is causing issue and concern with eating and drinking.  He’s so tired, that it’s taking 2-3 hours to get through meals and drinking.  Tiring, not only for him, but for the caregivers as well.  The decreased alertness and increased sleepiness while eating and drinking can become a serious health and safety issue for Patrick.  Not being awake enough to chew and swallow properly can cause him to cough and choke and potentially aspirate.  Chances of pneumonia increase with aspiration, something he can’t get.  We’ve been lucky thus far, but he does cough alot when trying to eat and stay awake enough.  He wants to eat, but it tires him so much.  It’s alot of work to co-ordinate chewing and swallowing, something many of us don’t realize or think about.

A consult for a feeding assessment is being done as well as a recommendation that Patrick have a G Tube put in.  The G Tube will not be to replace his eating, but to help.  He will still eat what he wants and can, but in a 20-30min time period.  Anything after that will be done by the G Tube.

By doing this, the hope is to improve his quality of life, even if just a bit more and hope that it preserves some of his energy and that maybe his awake/alert periods could possibly start to become longer.

A social worker is going to be asked to become involved as well.  As I am usually the one who looks for information and resources for most things I need to know, I’m so tired, I’ve not had the energy to do a whole lot.  As Lisa (support services person) told me this morning, she has no doubt how tired I am (you just have to look at me) and that I am doing a great job and being a great advocate, but it will be nice to have someone else involved who can advocate for me/us and do that extra stuff for me.  Looking for information and resources.  A little reluctantly, I agreed.  Social work is apparently going to get me more information on Kids Country Club (their website is down), a respite for children who are technology dependent and medically fragile.

I hope to hear from Neurology next week regarding the 24hr EEG.  My thought is now that with them deciding to put a G Tube in, it would make sense to co-ordinate the two since he will be in hospital 4-5 days with the G Tube.   Hopefully this will be done sooner than later, so this surgery can get done and he can start recovery and get better.

Lisa did make a point of saying that no one is thinking he will not make it.  The reality of it is though, this a very big, complex and complicated surgery and the risks are great.  Everyone needs to be prepared for ALL the possible outcomes.

I’m tired and can’t think of the rest at the moment, so I will sign off and update again later.

I did get a call this afternoon though from Neurosurgery Clinic saying they wanted a CT today/tonight or tomorrow for Patrick.  He’s having it 730am tomorrow morning.  I’m off to bed to get some sleep.

Goodnight my friends, thank you again everyone for your kind thoughts and prayers! HUGS!

 

Supportive Services = Palliative Care Team

I had posted a bit of an update the other day on my FB status.  It was in response to a family member asking for the latest update on Patrick. Based on reactions to my status tonight, it is quite clear, not everyone saw/read it.

I apologize.  I should have posted the update IN my actual status or here on my blog.  I’ve been so tired to do any length of updating, it’s just much easier to talk to someone in person or on the phone.

Here is the update I posted the other day…

Waiting to hear from Neurology to see when the 24hr EEG will be. They have told Neurosurgery to hold off on the surgery till the seizures are managed. I left a message for Neurology this morning. Supportive Services (Palliative) called this morning and are coming to the house on Thurs to go over things etc…

Patrick is doing ok. He has bouts of animation, but still tires easily. Dietition has been in and he is needing to have 2 supplements/Ensures a day to make his caloric intake. OT is coming out this week to discuss energy conservation for him.

As the day goes on, he tires more. A nurse comes to the house 2x a week. He will get his stitches out today and will need a port flush in the next couple weeks.  (stitches came out yesterday, port flush next week)

CCAC has given me information on services I can hire to come in at night if I decide to use a PSW or Nurse to keep an eye on him through the night. If I go this route at some point, it will be a nurse coming in, not a psw.

The money I have for respite can be used to pay for that service as well. It will just take those ‘hours’ away from the girls. Im going to call VON and see if there is additional funding somewhere so I don’t have to use those funds if I decide it’s necessary to have someone come in at night.

 

I used the term most are familiar with, perhaps that was a mistake, but it has also made people realized how serious this surgery will be.  Supportive services will be supporting us leading up to, during and after the surgery.  They will also be preparing us for things in case the outcome of the surgery is not what everyone is hoping for.  No one wants to think negatively, but we do have to deal with the reality of the situation as well.  Neurosurgery thought having them involved was a good idea for this.

In all the surgeries Patrick has had, I have never once thought he would never come out.  I will maintain that thought through this one, but as I mentioned, I have to look realistically and be prepared for this one.  This is a complicated and very long surgery and one that no one, even the Doctors are looking forward to.

I have my moments with things.  I’m tired.  I miss seeing friends and family, but very much appreciate when they stop by for a visit here to see us.  It makes me feel like I’m still connected to the outside world and provides a nice distraction, even if only for a little while.

We appreciate all the thoughts and prayers everyone has been sending.  Those who have dropped meals off because there are days I’m too tired to think about cooking or remembering to take something out to cook, it’s truly appreciated! Thank you!  Our schedules have been off because of Patrick’s tiredness, so meals are not always at meal times.

Thank you everyone, I will try to keep things updated, but please don’t hesitate to call or message or come by for a visit if you’re wondering how things are and have not seen a recent update.  I am tired.

HUGS to those who need them and thanks for those sent back! :)

 

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!