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…

 

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