Wednesday, May 2, 2012


We arrived home from Phuket yesterday. We had a fantastic trip. Swam every day. Ate way too much food. Played with friends (we had a group of 18 - five families, Lana's best buddies and two of their little brothers). Rode on an elephant, saw an elephant show and a monkey show... 

And now we are home, and there is a week until Maddy is admitted for her surgery. Eight days until the surgery itself. I set myself a target of doing all the reading for this semester of uni before Maddy went in for surgery, and after working really hard for the past couple of months, that goal is reachable. I still have two assignments to do before the 21st (technically before the 28th, but I want them done before I start my teaching prac) and I want to make headway on them in the next week as well - but today I've tried and tried to work but I am so preoccupied.

I'm not worried about the surgery itself - it's been a long time coming, I'm sure that Maddy will do fine. The doctors are prepared - more than prepared - for her unique airways. Medically I know she's in great hands. Of course things could theoretically go wrong - I'm especially aware of that after reading Grant's experience 18 months ago. I would post a link but Grant's blog has a virus at the moment. In short, Grant, who has the same form of dwarfism as Maddy, went in for his cleft repair and after the doctors attempted to intubate him three times, his airway started swelling causing them to need to cancel the surgery midway through, sewing his cleft back up the way it was rather than closing it. He was in PICU on a ventilator for nearly a week recovering from the experience, and still needed the surgery at a later date. If you have good antivirus software and want to have a read, check it out at

Even though I know that things CAN go wrong (they can go wrong in any surgery), the surgery itself is the least of my worries (is that irrational? Perhaps...) What worries me more is what happens after the surgery.

For the first few days (hopefully it is as short as possible), Maddy will be in the PICU. She will be on the same floor where she spent her first four months. The same double doors designed to lock parents out and patients in, except for 3pm-8pm. The other 19 hours a day, we will once again be "not allowed" to be with our daughter. She is extremely attached to me at the moment and I'm worried that she will be scared and lonely. She is extremely communicative - but very difficult to understand. She "speaks" mainly with signs and gestures, and some words which are not very clear to someone who doesn't understand her. She will be in a Chinese speaking environment when she only understands English. And for 19 hours of her day, she will be alone in that environment.

From past experience, I know that as much as I protest, they do not usually make exceptions on these rules. I plan to protest again - I really don't think that the isolation is healthy for a toddler. Particularly one who will be hurt and scared, but fully aware of what is going on around her and unable to communicate with the people around her. It is this that is really getting me down.

When Maddy is transferred from PICU to the regular surgical ward, we will be able to be with her 24 hours a day. At the moment, I'm just hoping that she won't need to spend too long in PICU - and that if we do, she will be too sleepy or drugged up for it to be traumatic for her (possibly the experience may be more traumatic for us...)

Please keep us all in your prayers and thoughts over the next couple of weeks. I can't afford to spend too much time thinking about all this as I have too much other stuff to do (although on the other hand, I think I do need to formally write out what I want from PICU to try and negotiate with the hospital so that we can be with Maddy more than just a few short hours a day). 

If anyone has any advice/encouragement/thoughts/words of experience - please comment or email me at nicolejoy81(at)

And as one last request (that makes my entire post seem so pointless), please pray for little Will over the next 24 hours - he will be born within the next day, and it will finally be clear as to whether or not his form of dwarfism is lethal or not. Either way, I'm sure it will be a long journey for his family and they need as much prayer and support as possible...


  1. My goodness, as a mother I can share your worry on this. Indeed not easy for a toddler to understand this.

    I would push as far as possible to stay with Maddy. I know of a case in HK where a parent was admitted as a patient so that they could stay with their child. I don't see how keeping you out will help the hospital to care for Maddy.

    Then, once you have done all you can, you can only try to let go, as hard as that may seem, knowing that Maddy needs to go through this.

    Thinking of you and wishing that this goes as smoothly as can be.

  2. Hi Nicole, been reading on and off and had to comment to say good luck with the surgery. Really really hope Maddy doesn't have to be in the PICU for more than a day!

  3. I will pray for Maddy and that her surgery is successful! I will also pray for her speedy recovery! Keep us posted! Hugs from Long Island! Xoxo