Wednesday, September 29, 2010

The Ups and Downs of this week

Every week these days have these ups and downs, it's pretty crazy... but this week has had some good moments and some not as good moments and I thought I'd share them with you :)

My biggest bummer moment this week is that I found out that my favourite doctor is being transferred to the general pediatric ward so he won't be our NICU go-to guy any more! I loved this doctor because he was a bit more "Western" in his "style of doctoring" (if that makes any sense). He was born and raised in the UK (although he is Chinese), so he seems to understand where I'm coming from better than most of the other doctors because he's practiced in the UK - he actually just moved to Hong Kong a few months ago. Although maybe there are good things about him moving to general ward - I usually talk most to him because he's the easiest to talk to, but he is more junior so he can't make any big decisions. With him gone, I'll probably talk directly to the doctor in charge - and then maybe that will actually yield more results, I don't know. 

One "crazy" thing that's going on right now is that we just decided to enroll Lana into preschool. The first month, she will be attending three mornings a week, and I will accompany her to the school. This will hopefully get her used to going. Then starting in November after she turns two, she will be going five afternoons a week, unaccompanied. I know that she will love it - and this is something that I've been thinking about doing for a while but put it off with all the pregnancy concerns, planning to look more into it when Maddy came home from hospital. But with Lana's 2nd birthday coming up next month, and with Maddy being in NICU indefinitely, I thought we should start actually doing something about it. So we start next Monday - wish me luck! I'm going to be really busy for those four weeks. It will be "easier" for me after November because Lana will be at school the same time that I'm at the hospital, if Maddy's still there. 

There's actually a lot of stuff going on at the moment. We've got two birthday parties over the next two Saturdays, and also one of Bernard's best friends is getting married on the 10th, and Bernard, Lana and I are all in the wedding party. October is going to be a crazy month!! And I've still got to fit in pumping as well as daily trips up to NICU in between everything else.

One thing that is bothering me a bit about Maddy is that her "ear bubbles" are now hardened - I'm a bit frustrated because the hospital did not manage the cysts the way that we were advised, leaving the bandages off them for a lot of the time - and I'm a bit worried about how her ears will heal. Other DD parents - once they start to harden, will the remaining lump decrease in size, or is it like that for life? Can massaging the lumps decrease the size? Is there anything that can be done at this stage? We spoke with the hospital over and over about the issues but they did what they thought was best rather than what we specifically asked them to do. And since we weren't about to remove Maddy from the hospital and we couldn't physically be there to manage her ears the way we thought they should be managed, our hands were tied.

One of the best things of the week happened today - I've been asking the doctors at the hospital a few times to consult with a DD specialist somewhere. I even provided them with a couple of contacts. Yesterday, I asked them whether they had consulted with anyone and the doctor said that they emailed one guy but he never replied. Bernard's been telling me for a while that I should just get in touch with one of them myself - and so today, I did. I decided to find the email for the professor who runs the Skeletal Dysplasia clinic at Westmead Children's Hospital (where we will take Maddy when we move back to Australia). He has a lot of experience in this area and is probably one of the most, if not THE most, respected doctor in this area in Australia. Plus with there being an actual Skeletal Dysplasia clinic, all the doctors there collaborate together regularly on the issues involved in these kinds of conditions (kind of like those rare multidiscipline meetings that the doctors have set up for Maddy).

So anyway - I emailed him an outline about Maddy's situation and asked whether he would be able to consult with the doctors, and whether we would be able to bring Maddy to him when we visit Australia. I told him we planned on bringing Maddy there when we move back, and it may be helpful both for the doctors there and the doctors here to be able to collaborate a little. He replied to me within a few hours - and not only is he willing to help, but he will also be in Hong Kong in the first week of December and would like to see Maddy then!!! I forwarded the emails onto our doctors and they plan to consult with him. I am so glad to be able to start to get a bit of a second opinion - even if at the moment it's from a distance. Maybe this will help to get that ball rolling again a bit...

It's been so frustrating the past few weeks, we're pretty much just waiting for Maddy to get bigger and stronger so that she will get these tests done - and so from day to day, Maddy's condition is exactly the same. It's a bit frustrating that nothing is being done day to day - I want to see results, and this feels like a case of "a watched kettle never boils"! It can be so draining - but every now and then something happens and reminds me that this is not forever :) And we can make it through this time.

Today also, I received one of the sweetest, most thoughtful gifts that I've ever been given. I went to visit one of the girls from my bible study group, and all the girls had put together a "In need of... box" for me! It's a box with seven different bags inside, each with a different label. There's one which is "In need of encouragement from friend", another one which is "In need of a good laugh" and so on. I'm meant to take a bag with me in the cab when I'm going to the hospital on days when I'm feeling down, or when I'm feeling in need of that particular thing. I had to resist the urge to open them all at once, but I think it will be better to savour them one by one. It reminds me a bit of "PS I Love You", where the husband wrote all these letters for his wife to be delivered to lift her up after he passed away. It made me cry!! And now probably seven different cab drivers are all going to experience my tears on the way up to the hospital on different days over the next couple of weeks ;) It was so thoughtful though and I feel so blessed :) :) Thank God for good friends who know the right things to say and do to encourage me and give me that little "pick-me-up" that I need :) :)


  1. What an answer to prayer, I had been praying that a specialist would visit HK, and be able to enlighten the Dr s there on Maddy's care. Praise God for that:)
    God bless you all & know that we are lifting you up in prayer.

  2. You're very blessed to have such great friends, Nicole. That is a perfect gift idea---truly inspired. It's very good that you can get in contact with other professionals in Australia who have experience with conditions like Maddy's. I hope the meeting in December will be fruitful.

  3. How amazing that the doctor you want to eventually be in charge of Maddy's care is coming to HK?! I hope the doctors in HK are able to put aside their "doctor pride" and let him help in her care and take suggestions from him.

    Also, it's hard to believe it's time for Lana to start preschool! Good for her =) I hope she adores it!