Category Archives: disabilities

What’s been going on?

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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

Passports for Children with Special Needs

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So…as I mentioned previously, we had passport photos taken the other day.  With the strict guidelines Passport Canada has regarding photos, I knew it would interesting.

Passport Canada has a page with general information for persons with disabilities.  You can take a look at it here. (Note:  I was quite surprised to see the address/URL for the page uses the word handicap in it.)

I’d like to know what YOU had to do, if anything, for your child(ren) with special needs to get their passport.

I called Passport Canada ahead of time to inquire what I would have/need to do if we couldn’t get a photo with his mouth completely closed.  They informed me I would have to get a letter from a Doctor explaining why.  Okay, I got on the phone with the Ped. Dentist and asked if they would help and provide a letter.  I explained the circumstances and situation and today I got a call back telling me the letter was being sent off in the mail today! THANK YOU Dr. Weinberger!! :)

During the photo taking, the photographer had asked me to remove Patrick’s glasses for the glare.  No problem, I took mine off for my photo as well.  She kept asking him to look at her or the camera, and he was, but it doesn’t look like he’s looking at you.  I told her he was and also asked if that would be an issue for their guidelines as well.  She wasn’t sure.  I called Passport Canada (PC) again and asked if there would be an issue with his eyes.  She informed me it would be up to the discretion of the individual office.  Needless to say, I’m looking at getting a letter NOW instead of later, just in case!  It also dawned on me that all children over the age of 11 have to sign their own passports, so I inquired about that as well.  Again, another letter from a Doctor is needed stating why he is not able to sign his own passport.  Patrick can write PAT, but not his full name, nor could he do it in the small space requested by them.

All of this will be worth it to know and see how much he will enjoy the trip! :)

Have you had to do anything in particular to get a passport for your child(ren) with special needs.  What do you think about the process?  Do you think they ask too much information?  Do you think all the letters are necessary?  Do you or did you have to pay for these letters?

Please share your experiences, I’d love to hear them.

Have a great evening!

Impressive Disney Planning – Cont’d

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For all the changes that we’ve had to make in the past week, our travel agent has been wonderful!  She has been quick with information, bookings, reservations and insurance stuff and more.  The girls are excited and Patrick is waiting for me to make up a countdown calendar to put on his wall.

4 of our sit down meals are reserved, one for each park, including two character lunches!  One with Winnie the Pooh Gang (whoever of them can make it) and another with one or more of Mickey’s Gang!   The other two reserved meals are suppers, one being a Chinese cuisine and the other Italian.  With the Dining Plan we have, (we have the dining plus plan for free), we get one table seated meal, one quick serve meal and one snack each day we are there.  Heather, our travel agent, called me today with some great news!!  All the restaurants we have our reserved meals with, will accommodate Patrick’s diet as well!  How awesome is that!! :)   They will chop/puree up Patrick’s meal for him/us! How great is that?!  That will make some of our meal-times easier! :)   We’ve been informed to inquire at any others we attend for meals, as they may accommodate him, but those are not guaranteed!  Regardless, those 4 meals still help.

We’ve been given information about accessing many of the attractions at the parks with regards to accessibility and their alternate entrances for persons using mobility devices.  These entrances also allow a maximum of 6 people from the party including Patrick to stay together.  Since we are now 5 again, we can stay together and enjoy the attractions together!

A couple of the attractions we are looking at, are Kilimanjaro Safaris and the Jungle Cruise, both I know Patrick will love as it will give him opportunities to see many different types of animals.  He is also excited about going on any attractions that are train rides.

Today, we went for passport photos.  I had already called Passport Canada and inquired about what would happen or need to be done if we couldn’t get a photo of Patrick not smiling and without his teeth showing.  They said I would need to get a letter from a Doctor explaining why.  So in the meantime, I’ve put a call in to the Ped. Dentist for a letter with an explanation and why I’m requesting one.

Everything about the trip is booked now.  Plane tickets, Insurance, Resort, Transportation to and from the airport, Park tickets and some of our meals…everything is booked and paid for.  The reality of it is starting to hit me!  All the little pieces of information that we’ve been given and all the answers to all the questions we’ve asked have been answered and answered quickly as well.

I’m a little extra tired tonight, so I’m going to end here for now.  I will post more updates soon.

Thanks for stopping by and keeping up to date with us.  We love to hear from you too!

Have a wonderful evening! :)

 

Disney Planning Cont’d

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Well our numbers have decreased, but we are still going!  Flights are booked and the rest will be finalized next week, just waiting for confirmation invoices and info.

I must say I’m a little impressed with some of the information that is available on the Disney site regarding accessibility and information for multiple disability types.  I will also say, it involves ALOT of clicking to go through everything!  I’ve printed out over 60 pages of information to go over rather than having to click around and find my way back to it all.  Here are some of the pages on their site:

More clicking throughout these pages to get more detailed information is required, but these pages are a place to start.  They have printable guides for each of the parks, which when printed out, is quite small in font size.

You will read quite a bit about how you should plan ahead as much as possible, and I completely agree.  For myself, I like to be as prepared as possible, know exactly what we’re getting into and how to best organize things to make things as relaxing and enjoyable as possible for everyone.

We are fortunate enough to have both respite workers coming with us to help out.  It’s amazing how much arranging and planning you have to think about to pull a trip like this off.  I’ve been doing the bulk of it thus far with laying the ground work and making sure we will be in accomodations that will work for everyone, especially Patrick.  Mom has appreciated this very much.  It’s a little more stressful, for me anyway, having someone else do it when they don’t ‘live it’ like you do every day.  I’m sure many will agree, when it comes to things like this, you feel better knowing that the necessary things are in place to ensure a good time when you have had input.

We have a great travel agent!  Heather has contacts and has worked with the people who arrange the Sunshine Trips for the kids.  She has used those contacts to help plan our trip as well.

I would suggest, as would Heather, to make sure you double check your booking and explanations of what type of accommodations you need and are getting.  We have found Disney really needs to update their website and look at some of their terminology.  They also need to better train their agents.  Twice Heather has called to double check bookings and been given mis-information.  We had to change our accommodations this morning as the accessible room we were given at one resort was not what they told her yesterday and it didn’t work for us.  We are thankful she has been diligent and making sure everything we need is in place for us.

Medical insurance is another thing we needed to look at.  Patrick had done so well for about 6 years, but in the past year, his health has not improved back to what he was previously.  For those who don’t have coverage with other companys or through work, there are some fairly strict guidelines to go with the coverage.  It is wise to check into exactly what you are/will be covered for to make sure there are no surprises.  One of the girls has medical insurance through her work, but still needed to have the coverage added for this trip.  Basically for us, as long as Patrick doesn’t end up in the hospital or have any change in medication between now and the trip, AND it isn’t for the same reason’s he was just in for, he will be covered.  Keep your fingers crossed, because if there were to be issues, they would likely be for the same issues.  Send a few prayers up for him :)

Heather has also looked into extra luggage for us for some of the extra stuff needed to bring for Patrick, and also found out I’m able to bring the Chopper with us as long as it’s in the checked luggage.  With Patrick’s medication needing to be refridgerated and such, they are supplying a small fridge for us at no cost because it’s for medical needs.  They have arranged accessible transporation for us from the airport right to our resort and back again when we leave.

We are working on some other details while waiting for the final confirmation numbers, but things are moving along fairly well at this point.  Aside from the ‘hiccup’ with the accommodation (which has been sorted) and the particulars of the medical insurance (didn’t surprise me), we are quite happy with things so far.

Our travel time falls during a week that offers a free Dining Meal Plan, which is great, and as recommended MANY times about reserving your sit down meal as far ahead as possible as they fill up quickly, Heather will do that for us next week.

Next week is passport photos for Patrick and I, and going through the information I found and printed to see what attractions and rides are accessible, which require transfers and which one’s Patrick would be more interested in seeing.  We already know he’s very interested in Animal Kingdom, so that’s a given. :)

One more note before signing off for the night.  My sister’s SIL (sister-in-law), gave me a site to take a look at also.  They also have some great information and more photos of rooms and attractions and accessibility (Disney has very few accessible room photos, and I’ve not seen any accessible ride/attraction photos at all so far).   allears.net

It just so happens, when I shared this site with our travel agent, her contact with Sunshine Foundation, gave her the same site :)

Feel free to email any comments, suggestions/feedback.  I’ll be happy to reply.

Till next time…. :)

 

 

 

 

 

 

Disney, here we come! Start – End!

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So this is going to be a journey in itself.  A trip from which to learn and grow from.

Patrick and I have travelled before, but only to Nova Scotia.  This trip will be much different!  A farther distance, another country, a busier place, no comforts of home so to speak.  Not having all the things that make life more accessible and easier will be interesting.

This is a family trip.  8-11 of us are going.  My mother has felt very strongly the past while about doing a family trip.  The time has come to do it and now the organizing and planning has begun.  We’ve been researching for a while, but time is flying by and things need to be put into place now.

We’ve been lucky enough to have been referred to a local travel agent who has experience with booking with the Sunshine Foundation, so we are confident she will be able to provide us with the information we need and to help us book the most accessible trip possible for us.

Already there are so many things to think about.  Accessible rooms (what’s accessible for one, isn’t necessarily for another), washroom facilities (showers etc), meals preparation, laundry facilities, extra luggage for the extra necessities needed for Patrick and also looking at what type of things Patrick will be interested in seeing and how accessible they are.  This is just a start.

It’s not just Patrick that needs to be taken into consideration as I mentioned earlier, there is a fair size group of us.  For me though, making sure we have access to the things that will make this trip more enjoyable for Patrick and I and in turn everyone else as well.

I’m thankful I will have some help, not just from family, but Mom has told me we will be bringing one of Patrick’s respite workers with us to help me/us out as well.  That gives me some relief as well.

I will be blogging about our experience(s) and how things are going with our travel plans and the actual trip as well.

If you have been to Disney World in FL and have first hand experience with travelling with a child(ren) with disabilities, I’d love to hear from you.  Perhaps we can all learn from each other on a variety of things trip and travel related.  :)

If you have any tips, suggestions or comments on anything you’ve experienced or think I should know or take into consideration, please share.  I’d love to hear from you.

For now, this is the beginning.  Passports need to be gotten for Patrick and I.  That’s another thing in itself, and the bookings will be done within the next week.  For those wondering when we are looking to travel, it’s mid to late January or early February.

Hope you enjoy following our journey, we look forward to sharing with you! :)

What is Accessibility to you?

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Wikipedia defines accessibility as the following:

“Accessibility is a general term used to describe the degree to which a product, device, service, or environment is available to as many people as possible. Accessibility can be viewed as the “ability to access” and benefit from some system or entity. Accessibility is often used to focus on people with disabilities or special needs and their right of access to entities, often through use of assistive technology.”

The dictionary has an interesting definition of accessibility:

1. Easily approached or entered.

2. Easily obtained: accessible money.

3. Easy to talk to or get along with: an accessible manager.

4. Easily swayed or influenced: accessible to flattery.

 

Both have offered a very broad, general definition.  What does accessibility mean for you?

For many people who live with disabilities, accessibility can mean the difference between being able to get out of the house to attend to the daily chores/outings/events and things typical for many people, or NOT being able to get out or get to many places to do what many take for granted, go to work, go shopping, visiting, etc…

Accessibility means different things for different people.  We all need to have accessibility to some extent.  You may be thinking, “I don’t have a disability!”.   Disability or not, we all use things everyday that help make things ‘accessible’ to us.  Think about it.  Can you think of 3 things you use every day that help you do things and get places?

How many times have you used the automatic door openers to enter buildings?  That’s accessibility!  How many times have you chosen to take the ramp instead of a few stairs?  That’s accessibility!  Have you ever used a ‘jar gripper’ to help you open jars and other lids difficult to open?  That’s accessibility! Do the taps in your kitchen or washroom have ‘lever-like’ knobs instead of the usual ’round’ ones?  Believe it or not, that’s also accessibility!

More and more I think about how things are looking and how they will be, accessibility-wise, with regards to my son.  Where can I take him that will be accessible?  What if he wants to go places with his friends more as he continues to get older, and it’s not accessible?  My thoughts already go to even just the simplest things like going to family dinners.  Not everyone has an accessible place.  At 14yrs old, he is too big to be carrying on my own.  Even to do a 2 person lift, how many doorways are wide enough to accommodate?

1 in 7 people in ON have a disability and that number will increase as our population ages. The Accessibility for Ontarians with Disabilities Act was passed in 2005.  Its goal is to make Ontario accessible for people with disabilities by 2025.  Through province-wide accessibility standards, they will improve accessibility by identifying, breaking down and preventing barriers to accessibility.

In the near future, I’m going to take a look at accessible housing to begin with.  How many homes are actually accessible?  What does the market consider accessible? (Yes, it will be different for each person’s needs, but in general, their definition)  Are the accessible houses affordable for those who actually need them?

I’m also going to look at transportation.  It’s availability; it’s cost and is what’s in place working? Is it enough?

If you know someone in either of these areas that would be interested in meeting with me, discussing this and even possibly giving me a ‘guided tour’ to see what’s out there, please contact me, I’d be pleased to meet you.

I will be writing about the information I find for articles and for my blog.

Update 6 – one of those appointments

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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

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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 3 – one of those appointments

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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!