Tomorrow's the day

I will update either Monday evening meaning no shunt or Wednesday which means he was shunt'd - please keep us in your thoughts and prayers!

Thank you

to all my friends that have offered their support and concern for Benjamin - it means a lot to me and I truly do appreciate it. To my friends in Washington, the offers for taking Logan have been great and I do truly feel grateful for you all!

~Jenn~

Medic Alert Bracelets

I have been looking into these for Benjamin as he will be required to wear one that says Hydrocephalus even if he doesn't get the shunt in so if he is ever without mommy or daddy and something happens - they know right away about the Hydrocephalus since it is a life long condition.

I told Ben I am going to get him a bracelet that he has to wear all the time and he is okay with it - They even have sport band ones that I can get but my fear is him taking it off and losing it - I think I may just get him one with the clasp that he can not undo.

It is around $80 for the starter kit through medic alert Canada - will have to look into this more after his surgery if he requires the shunt - that has to be on there.

Friday's Appointments

We met with Pre-op on Friday in Seattle - where they did a physical and a complete history on Benjamin. Going down we told Benjamin there would be no needles just talking and he was happy with that - however they wanted to do a blood count.

Benjamin & I went to the lab - Logan & Ryan went for a walk around the hospital -- Benjamin kept saying to the man as we were walking to the blood lab room, "please man don't make it hurt okay please man" - Benjamin was such a brave boy- he sat on mommy's lap and got his blood drawn - didn't even say ow or anything - he watched the whole time - mommy was very proud of him.

So the plan now is

Benjamin, Logan, Ryan & I are heading to Seattle Sunday afternoon - we have a hotel booked about 20 minutes from the hospital - we are going to meet my parents in Seattle - they are staying at the same hotel.

Ryan & I are going out for supper Sunday night just the two of us - first time in a long long time that we have had time just for us - the boys are going to play with Nanny & Grampy.

We have to leave the hotel by 615am (hopefully having breakfast at 6am!) and head to Seattle children's hospital for 645am - Benjamin is going into the Operating Room at 8am. They are going to do the lumbar puncture and if the pressure is high then they will operate on his brain and insert the shunt.

If he does have the operation then he will be in the hospital for 1-2 days - I am so happy my parents are going to be here with us!

I will update Sunday before we leave
and then No update on Monday means we are in the hospital and he had the shunt put in - so cross your fingers he doesn't need a shunt and you can get an update on Monday evening - if not I will be by a computer probably Wednesday to update......

Heading to Seattle

for two appointments this afternoon...preop and anthelogist

Will update when I am home

Update

Benjamin has a pre-op appointment at 130pm in Seattle and then an appointment with the Anthelogist (yes I know I spelled that wrong LOL) at 330pm.

The Plan now is to go for the lumbar puncture on Monday and test the pressure right away and if it is high then they are shunting him right away. So it can all come at once and I am freaking out.

I am very lucky that my parents are staying another week to be with Ben (and me) - our hotel is booked for the 14th to the 18th

Waiting for the phone to ring

Seattle is wanting to do the lumbar puncture and possible surgery all at once now -- just waiting on the dates - could be as early as monday - they are stating lumpar puncture if pressure is high they will call out of the Operating room and tell us they are shunting.

Is it safe to say I am freaking out?

No Holter Monitor

I forgot to write yesterday that with Benjamin's EKG showing no problems, all normal readings that there would be no need for a Holter Monitor.

(A holter monitor would of been leads on Ben's chest and a machine on his belt for 30 days - can you imagine 30 days on a 4 year old, my mom said that they don't even normally put those on Adults that long)

I am very much relieved that there would be no Holter monitor - with everything that is going on - I am trying to keep things as normal as I can for Benjamin - he is in summer camps all summer and preschool in July - I want him to be able to participate in these things as much as possible.

EKG results

Benjamin's EKG was this afternoon and they were well within the normal range
and the bloodwork so far came back normal as well.

Ryan spoke to Children's hospital and they do want a consult before the lumbar puncture so this means that we will be travelling to Seattle on the 29th of June overnight for a 845am appointment with Neurology.

Next App't

June 30th at 845am with Dr.Browd in Neurosurgery

waiting to hear if we can get a lumbar puncture done on the 29th or early morning on the 30th to have the results ready to read with Dr.Browd on June 30th

Hopefully will hear back on that in the next day or two

Keep your fingers crossed it can happen the 29th so we don't have to make more trips to Seattle

Update on 2005 Health Records

The lady from the IWK children's hospital in Halifax called me back this morning (thank goodness it wasn't at 4am when they opened LOL (we are 4 hours behind Nova Scotia) -- they can get all of Benjamin's records and send them to Seattle Children's for me however they need an orginal signature of me releasing the information. The US postal service and Canada Post can be so slow and I want these records now not in 6 weeks time because that will be too late. Ideally I want the records before our appointment with Dr.Browd in Seattle in 2 weeks time.

Anyways - with my parents being here I am going to write up a letter and sign it - my mom will hand deliver the letter to the Peds Health Records department and they will fax the information required to Seattle Children's for me - thankfully my parents are here that is saving me 3-4 weeks of waiting!

Early to Rise

Benjamin fell asleep with grampy last night watching tv in Logan's room (where they are staying well they are here) and then was up this morning at 6am -- logan was up at 10pm through to 1pm and then again at 530am - so it has been a long night.

Benjamin's EKG & Bloodwork is today at 2pm

Wondering....

My mom has mentioned it now a few times that what if we would of left Benjamin in utero longer would he of had these issues. Benjamin was induced at 36 weeks 5 days - nothing was wrong, his lungs were mature - it was just me wanting him here safe with me after losing Rebecca 18 months previously - The doctor did an amnio - his lungs were good and we took him out.

But we spend 6 weeks in the NICU. he has speech problems and now he has Chronic Hydrocephalus - I can't help but also wonder if we had left him alone would he have any of these problems...hmmmm

I contacted the IWK today to get his records from April 2005 and left a message - no one got back to me - will have to call them again in the morning

Ben after his MRI (still sedated)

Small video of Benjamin still asleep after his MRI

listen closely you can hear him snoring

EKG Update

Just spoke with the Naval Hospital in Oak Harbor and his EKG will be at 2pm tomorrow afternoon - they are just walking us in because of the urgency to get the EKG performed - The doctor also put through bloodwork for us to get done tomorrow.

My mom (nanny) will be coming with us to the hospital for his EKG, my dad (grampy) will stay home with Logan.

Benjamin has been such a strong big boy through all the testing - hopefully we will have all the answers soon

Our Update

Benjamin has been officially diagnosed with Chronic Hydrocephalus (basically the fluid on his brain isn’t being absorbed like it should be and his 3rd and 4th Ventricles are rather large) This is something that has been going on undiagnosed for a number of years they figure – at least 3 years – earlier tests were performed at birth and there was no notice of large ventricles at that time. The reason this was found is because of the CT Scan that was performed on May 15th after Benjamin fainted at a friend's 2nd birthday party.

The Current Plan of attack is:

1 – Sedated Mri
This was performed on June 8th which showed Chronic Hydrocephalus

2 – Othmapology Appointment (checking pressure of his eyes)
This was performed on June 8th which showed normal pressure in his eyes

3 – EKG
Contacting Dr.Dorey (NHOH) asap for this to be done

4 – Possible Holter Monitor
Contacting Dr.Dorey in regards to this possibility

5 – Meeting with Dr.Browd in Seattle in 2 weeks time
3rd week of june – after EKG has been performed

6 – Television Test
Leads put onto Benjamin’s head and television will be watched for 40 minutes to watch brain activity (will attempt to schedule for 2 weeks, same day as app’t with Dr. Browd)

7 – Lumbar Puncture
Within the week of the appointment/meeting with Dr.Browd
This will require another sedation of Benjamin

8 – Possible Shunt Surgery
This will be done if the pressure from the lumbar puncture is high – this will be done in approximately 4-5 weeks from today – resulting in 2-3 days in Seattle Children’s Hospital as a patient recovering from Brain Surgery.