Please be Henry's Village.

Henry with his HUGE and Beautiful Bear that Shelly, his Amazing Nanny and our Friend gave him for the drive up. This is no easier for Shelly - we are lucky to have her love our boys as much as she does. Shelly is a very special person.

It is 5:52 and Henry is down and asleep for the night after a very long and brave day.

We want to post an update, but in truth, it is hard to even know where to start.  We want to tell our friends and families how we are doing and we want to tell other families (going through this) the truth about how it feels and the experience... the latter feels very hard to share right now.

First, the update..    It always feels like a bit of victory to get here to Edmonton with everyone healthy.  Any cold or runny nose for Henry means the surgery gets post-poned. This time, because Henry has teeth, he needs a letter from the dentist clearing him for the surgery - basically no infections or cavities... Check ( Thanks Scott Townsend :) )...  Not to mention all the logistics of arranging care for Magnus and Owen so they could stay in Calgary.  We owe a huge debt of gratitude to our wonderful nanny Shelly ( and her great hubby Kent, and beautiful daughters Brittney and Alysha ) and to our good friends Gord and Stacy, who will also be helping back in Calgary (all the help and support we are getting deserves an entire post in itself)  so so many others are providing loads of back up support beyond our expectation.....

So, we made it here and today was all the pre-operative workups, beginning at 7am.... 7 hours worth.

Waiting in Pre-op for sedated Echo

We knew what to expect from the previous times... sort of, except that Henry is much more aware now. Even at 17 months, he is clear something is going on. We didn't expect him to be so afraid.  There were a lot of tears (some his, some ours), but he got through everything well:  nursing checks, blood pressures on all extremities, 02 sats, review with Dr. Ross and his fellow, a visit from social work, from physio, a chest x-ray, bloodwork, ecg, and sedated echo.... and he maintained a fairly good disposition after 16 hours of nothing by mouth (this was the case because of his requirement for sedation for the echo).  He woke up from sedation with a bang - yucking it up, babbling away and wanting to walk all over the place, despite the fact that he was completely intoxicated....  That was quite entertaining.

The business of the day left Henry basically 'punch drunk' for the remainder of the day and ready for early bed..... after 2 baths with the special sterilizing soap (the third will happen tomorrow morning before we leave).  Henry was ready for today to end - not a tear when we put him down. Henry will be first case of the day tomorrow, so we need to be at the hospital for 6am.  He will be given a medicine called Midazolam that will help relax him and also make him amnesic for the period leading up to the surgery.  That is a comfort to us both.  Dr. Ross talked about his surgical plan with us today.  He expects the surgery to take approximately 4 - 5 hours, but most of this is getting in to Henry's chest safely (since they have to carefully navigate scar tissue and adhesions that can be there from the previous 2 surgeries).  The actual resection of the muscle bundle, he told us, will take him approximately 3 minutes..  If all goes well, we should have Henry back out of the OR midday.

It was a hard hard day for us all.... Henry finally gets some food after 16 hours

Now, the hard part...but one that we hope will help others maybe be able to prepare .....


How can we be the rock, when we just want to crawl under one?

This time around, even though we remain positive and optimistic and know in our hearts Henry is going to do great, has been emotionally shattering.  We didn't expect it to be the hardest of his three surgeries ( for us ). Henry looks great and is doing everything his brothers do with no outward sign of any trouble. So, we took a deep breath and know this is the road we are on.... We can do this - we know what to expect and we have already made it through this twice before. What we didn't realize is all the recovering we are still doing from Henry's last surgeries.

http://www.youtube.com/watch?v=3xK7YtUg9As&feature=youtu.be

Driving out of Calgary with him and arriving in Edmonton brought back a flood of emotions and memories. Both of us were flooded with thoughts we hadn't had in almost a year... remember the chest x-ray?  remember when they tried to extubate him and he had trouble breathing and the tricks they had to use? remember when Dr. Ross came out and said Henry had been bleeding out of every stitch hole and they didn't know why, but they had gotten it under control..... We mention these things, because we live day to day with our happy lovely family.  We aren't scared.  We don't live in fear.... but we are  dropped to our knees in an instant.

 A little dinner at 'the House'

and now for some play time!

What does it say that we still know the security codes off by heart at Ronald Mcdonald house. Or that our frequent coffee buyer card is still at the coffee shop? Geez, we just left.... We weren't coming back for 5 years or more....but here we are. Scared, Sad, Tired, Beaten Down, but - BUT still positive about Henry's outcome. We have to be - we can't crawl under that rock.

Helping Daddy at 'The House'

Today, when Henry was sedated, the monitors would alarm "no pulse", or his heart rate would drop quick significantly, and the cardiologist "just needed to get a few more images", then talked in hushed tones about getting better pictures and potential narrowings... They just don't notice you are listening and have a basic understanding. It is a concern, but likely won't change tomorrows surgery. We wait with baited breath for tomorrow. We have had a few too many curve balls to avoid the notion that another is coming our way....

Henry is now sleeping, exhausted from the day. Mommy and Daddy are finalizing everything needed for tomorrows early start. With nearly a foot of new snow, we hope that all needed will arrive as we hope for tomorrows big surgery. The weather reflects the cloud that hangs over us... When the sun comes out, the snow will be beautiful and when Henry rises from this surgery, he too will Spread his beautiful sunshine. We hope that day is soon.

Tomorrow is a very big day. Please collectively send your positive vibe to Henry ( and to us ). We could sure use your help. Will you please be Henry's village?

Tomorrow is a Very big day.....