Chilliwack Child Photographer │ Surgery Day at Children’s Hospital

Those of you that know our family know that we’ve spent a few days at Children’s over the last 4 years 🙂 But for those of you that don’t know us, I’ll share a little background. Blake was born in the middle of the night in November of 2008 after a routine pregnancy. We got to hang out with him for the rest of the night, and then that morning, when the GP came in to see him, we found out that he had Down syndrome. They also found that he had a bit of a heart murmur so he was sent to the nursery for monitoring. After spending a few hours in the nursery, Chilliwack felt that they didn’t have the proper resources to care for his heart defect, and he was flown to Children’s that evening. Talk about a whirlwind. We had to drive to Children’s in Vancouver after a crazy, emotional day, and after having had no sleep the night before. We still had really no idea what was wrong with his heart, and were tired and scared. When we got to Children’s, we got directed to the NICU, and found our little man in an isolette, covered in wires and surrounded by about 6 doctors. The doctors still weren’t able to tell us exactly what was going on, and what was going to happen. That night again we got very little sleep and we did a lot of praying and crying.
The next morning we finally got told that he had a hole in his heart that would require surgery in a few months time. He was also displaying symptoms of something called Pulmonary Hypertension, 2 words that have changed our lives forever. This condition either exists due to other factors (like having a heart condition) or can exist independently of other factors (really bad). So the doctors were hoping that these symptons would disappear following the heart surgery.
So when Blake was 4 months old we packed up the car, and drove the hour and a half back to Children’s to have his heart repaired. The surgery took about 4.5 hours, but it felt like a whole day. We’re so thankful that my mom and my oldest brother could hang out with us and distract us while we waited! He came through surgery like a champ (thank you LORD!!!), but it was still a long ways to full recovery. We ended up spending 4 days at Children’s and then were transferred to Abbotsford for another 8. Which was awesome, because it’s only 25 minutes to Abbotsford 🙂 He ended up coming home with a feeding tube, so we are now official experts in that department as well 🙂
But the bad news is that the elevated blood pressure in the arteries that bring blood from the heart to the lungs did not come down after the surgery. So he was officially diagnosed with Idiopathic Pulmonary Hypertension. PH has no cure. In laymens terms, basically those arteries will begin to calcify over time, so will become narrower and narrower. The heart will have to work a lot harder to pump blood through those arteries, and may result in heart failure. Blake has been on meds since he was 4 months old to treat these symptoms, and to slow down the process of calcification in those arteries. We have had many return trips to Children’s for follow-up appointments, Echocardiograms, ECG’s, and heart catheterizations (which are consider surgeries as well) etc to see if the meds were helping at all. Everything had seemed about as good as it could be in the situation and we had been left to carry on with life for the last year and a half. We just recently had another catheterization, after which they decided to start him on a new medication in addition to the one he was already taking.
Which brings us to last week. Blake always has fluid behind his eardrums – Kids with Ds are notorious for their tiny ear canals and can be more prone to ear infections. He had tubes placed when he was a year, and we recently decided to do them again. He has never passed a hearing test due to the fluid, and we want to give him the best chance we can when it comes to speech. His speech is already delayed, and we didn’t want it to be worse because he couldn’t hear properly. So last week Wednesday my mom, Blake and I took another trip down to Children’s for ear tube surgery! I’ve never taken photos of what it’s like to spend a whole day at Children’s, so this time I decided to do just that!
A gorgeous day!
The first step is to go hang out at Surgical Daycare. Even with having nothing in his tummy (you have to fast before being sedated) he was in a great mood
The nurses take all his stats: blood pressure, oxygen saturation, temperature, height, weight etc and ask all sorts of questions.
Then the surgeons come in, analyze all the data, make sure he’s healthy enough to go through with the sedation, and ask their own questions.
Then I get decked out in my gown and hat, and we follow a nurse to the OR. Here is most definitely one of my favorite images I’ve ever taken. Blake looks so small and so sad in that huge OR surrounded by all those adults!! After this photo was taken, I lifted him on the table, and hugged him while a nurse blew bubbles at him to distract him, and the doc inserted his IV and got the “magic sleep potion” going. His eyelids started to flutter and then just sagged into my arms, fast asleep. I laid him down, and quickly got shooed out. It’s hard to leave our little munchkins behind like that. So small and vulnerable.
Then we just hung out in the waiting room until a doctor came and told us how everything went. We always have to wait for a bit until we can see him, because they have to wait until he wakes up a bit. So about 15 mins later they told us we could go see him. He wakes up in the PACU (Post Anasthetic Care Unit) and he wakes up MISERABLE. Thanks goodness for computers!! We hung out in there, feeding him popsicles and monitoring his heart rate, oxygen saturation etc.
Unfortunately, his sats (oxygen saturation) didn’t come up like they were supposed to and they decided to admit us overnight. NOOOOO!! Worst news ever!! I wasn’t expecting it be an overnighter, so had NOTHING with me, and my mom and I had driven together! It took a bit of logistical juggling to figure all that out!! So here’s Blake in our new room up on 3R.
My riDICulously amazing husband drove out after work with bags full of stuff that I had requested by email, and he even brought stuff that I forgot to ask for. ANNNNND, he got a room at Easter Seal house which is just down the road from Children’s and sent me there to sleep all. night. through. I can’t even tell you how amazing that felt. Cuz spending the night with a beeping machine and another family with a hurting 8 year old is not fun. At all. I came back at 6am to take over, and then Erik went back to Easter Seal house to grab a nap. We finally got released at about 10:30am. Blake’s cardiologist assumed that Blake’s lungs just needed a couple of days to recover from the sedation. We are in touch with his respirologist and he’ll decide in a day or two whether or not he wants to see him soon.
So that’s how our crazy week went and we are both just super thankful for everyone’s support and prayers!
XOX Jete, Erik, Blake & Parker

  • Beautiful images. What a upbeat little boy!ReplyCancel

  • Kristie o'Hara

    Hey I am pretty sure we had the same nurse when we were there with Luke! Funny it’s just the back of her head but I remember her she was so great. Praying the tubes help!!!!!ReplyCancel

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