Saturday, March 26, 2011

Sully is

Sully is magnificent, special, beautiful, courageous. And either surviving or dying and I don't know which for sure.

We met with the doctor on Tuesday and he confirmed that Sully's symptoms late last week were a result of him not coping with the weaning of nitric oxide (gas delivered through ventilator). The doctor also told us that the PICU team consulted with colleagues worldwide and everyone is pessimistic about Sullivan's ability to survive his pulmonary hypertension. So, sorry not to update the blog this week, but it has just been very painful.

Neil and I have consented to a 2 month trial of oral medications (vasodilators) to try and get Sully off the nitric (and eventually off the ventilator). We also consented to a tracheotomy to allow more comfortable ventilation. It sounds hideous, but after healing from the trach surgery, it is much more comfortable and the kindest thing we can do for him. If the hypertension actually does start reversing, it will still be 4-6 months on a ventilator, and Sully would have to survive the cold and flu season. The doctor was very clear that Sully would not survive the common cold and unfortunately the PICU is full of kids struggling with colds in the winter.

Sully isn't gaining that much weight (he is still only 3.82kgs) but is managing to tolerate all his feeds of 25ml per hour, so the dieticians suggested adding polyjoule (sugar) to the breastmilk to add calories. We have tried formula twice before and Sully just threw it up, so we are hoping polyjoule is easier for him to digest. And hopefully he grows blood vessels with the extra calories, not just hair and nails!

Sully is a tough nut.


  1. Tara and Neil,
    We have you and your amazing courageous Sully in our thoughts and heart.
    Sending you all lots of love
    Shaz xxx

  2. Sully precious, so determined...

    We will keep hoping and praying for our adorable nephew and send HUGE HUGS to all three of you.

    Jenny, Gerard, Noah, Finn and Evie

  3. Just browsing the internet about other babies with cdh and came across your son was born with cdh in october of last year....he is currently home, but has a trach and is completely vent dependent. My sons name is Noah.....he truly is a warrior and it sounds like your baby is too. If you need anything or have any questions, you are more than welcome to email me at

    Although having a baby with a trach is very difficult, the best feeling I have had is knowing that my baby can breathe easier...