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Full Feeds! Aug 14, 2012

August 15, 2012

Oliver had a good day today! He started off with a very thorough bath, and he now smells much less cheesy, which is a pleasant change. He then promptly threw up, luckily all over me and not his sparkly clean self. He went for an ultrasound to check for reherniation (looks good!) and to check on his clots. The subclavian clot is gone and the other two are going away (yay!). Dr Thrombosis (whose name I don’t know but who I love) is very happy. They’ll check again in September.

These tubes are slowing right down. As a matter of fact, the right one has stopped! We’re on full feeds now (so long TPN!), and drained a total of 30mls yesterday. Dr Cox was shocked when he came for a visit today, Oliver was draining 30mls an hour when he was in PICU! So… The right tube is coming out!!!! Tomorrow!!!! One less tube!!!! Soooo exciting!!!! The left one is still draining, so still staying in, but if they can introduce fat in to his diet while still reducing the loss then he could get rid of that too! These tubes are big, heavy, and uncomfortable for poor Ollie who only has 4 days left of morphine, so getting rid of them will make him happy as well as Mommy and Daddy!

Respirology came for a visit today and we chatted about Oliver’s heart and lungs. He’s still got pulmonary hypertension, and will be having another echo, but it’s not terrible so oxygen is enough treatment for it. Oliver is not amazing at clearing co2. A normal co2 is 34-45. CDHers can sit a little above that. This is my understanding of pulmonary hypertension: When co2 is high, the heart can compensate for it to keep the body at a normal ph (7.3 +). But that comes at a cost, pulmonary hypertension. When the heart can’t keep up, the ph becomes acidotic and sends the body in to a pulmonary hypertensive crisis. This is heart failure and ends terribly. Oliver’s co2 is usually in the low 60s but he maintains a normal ph. Hopefully, over time, his lungs will get better at clearing co2 so his heart won’t have to work so hard to compensate for them. Until then, he remains at risk for a crisis. The risk is low, but could be triggered by an “acute event”, such as surgery or an infection. So I want to apologize that we still have to keep visitors to a minimum. He wants to meet you all and will one day, just not yet.

The Child Life Social Worker from PICU, Kim, gave us 3 tickets to the ROM so we could take Poppy to see the dinosaurs. Poppy LOVES dinosaurs. So today my mom came and babysat Oliver while we took Poppy. It was so much fun. And so amazing of Sick Kids to take care of families like that. So amazing, we are so grateful to the most amazing hospital we could ever conceive of. Who would even think to take care of not just the patient, but their Mom, Dad and sister? Poppy loved having both her Mommy and her Daddy at the same time and we loved being together. Our friend Tim, who works in IT here, also told us about their volunteers who will watch your child if you want to go do something (eat lunch, go get a coffee, etc) but don’t want to leave your baby alone. Amazing. Thank God for Sick Kids. Xo

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Cuddles with RT/roomie Ali. In her professional opinion, he is cute.

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12 Comments
  1. Cousin David permalink

    The second last picture looks like he’s faking being asleep and is smiling. See you when you get home.

  2. Joan Tyler. permalink

    Another day to be thankful for…keep it up Ollie!

  3. Reading all of this makes me so happy 🙂 Go Oliver!

  4. He is looking stronger with each post!! Love it!

    As a CDH mama I will tell you don’t EVER feel bad about kindly asking friends and family to stay away..especially while in the NICU.. and even after – and especially during cold and flu season.. I posted a blog post before we came home setting expectations that we would be living in a bubble.. my friends are still SUPER cautious 2 years later and if they even think their kid is getting a cold, they tell me and cancel play dates. What is nothing or mild to other children, can kill our babies when they are so fragile – once people understand the situation- I think 99% of people get it. They soo want to meet your sweet Oliver, but I bet everyone is willing to do this on HIS terms.

    I AM SOOOOO happy he is making these great steps forward. I have been praying for him every day! LOve that you and your hubby got a date with Poppy together -that looks like it was a lot of fun. Praising God for another good day…

    Love,
    Liz

  5. Lyn permalink

    Oliver is starting to look almost chubby!!!! Good job. T&Ps

  6. Susan Wesson permalink

    The beauty of being at Sick Kids is that you are working with very experienced professionals, so the top of the field can give you their expert opinion. Ali is absolutely right – he is cute.

  7. Mom of two permalink

    Yaaay for another good day!! Hoping and praying for many more to come! Ollie is the cutest!!

  8. Lani permalink

    I love reading these happy posts! Yay Ollie! And yay for a day at the ROM with sweet Poppy. 🙂

  9. Looks like he’s smiling there!

  10. I fully agree with Ali’s professional opinion.

  11. I agree with professional opinion that he is too cute. I do miss his bug eye pic in this post:) Glad to know he is off TPN…yayy for steps forward!!!

    http://ourcdhherolittlea.wordpress.com/

  12. Laura permalink

    Oh, he is so stinking sweet! I’m so glad to hear that Poppy got a Mummy and Daddy date too. I bet it was good for three of you to be together in a fun environment. YAY!

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