Tuesday, April 17, 2012

May 10

Today, Bernard got a call from Maddy's surgeon. He was calling to say that the only date possible for Maddy's surgery would be April 30. While it was wonderful to have a date, that was a date we specifically told them was not acceptable since we would be out of Hong Kong at the time. 

When Bernard told him that it wouldn't work, the surgeon replied "Well that is the only date available because such and such a doctor will be going on leave for three months. Would it be acceptable for you to wait for the surgery until August?"

Bernard told him, apparently in no uncertain terms, that it was most definitely NOT acceptable for us - that we have been waiting for months already and would not accept an additional three month wait just to facilitate them. The surgeon offered that another alternative might be to split the surgery up, instead of doing the cleft repair AND the grommets AND the hearing test, they could do multiple procedures. Bernard was unsure of what I would think of that idea so he asked the doctor to call me to ask me instead. Bernard then called me and relayed the entire conversation to me so that I would be prepared for the call.

I'm so grateful that the surgeon called Bernard instead of me - I would almost definitely have gotten emotional (either teary, or angry) and possibly irrational and may have felt pressured that waiting until August was our only option. Bernard, on the other hand, is far more level-headed in those situations and calmly but firmly told the doctor that what he was proposing was unacceptable and that we have been flexible for months already, and now we expect them to work around our schedule. 

I waited an hour to hear back from the surgeon, but when he called me, he had booked Maddy in for surgery on May 10. They will be able to do all three procedures in the one surgery (the cleft repair, ear tubes and hearing test) and I am so thankful for that. That all said, I know that anything could come up - Maddy could be sick at the last minute, the PICU could be unexpectedly full and unable to accommodate Maddy post-surgery, an irreplaceable doctor could be sick...

Am I happy? Well I'm relieved that we are moving forward, that there are definite plans. I'm also glad that I know about them this far in advance. We were expecting to not find out until a week, or even three days, in advance. I'm glad that we can move past this - this has been our next "hurdle" for so long, just looming there, seemingly so close - but always just out of reach. I will be glad when it is behind us. 

But all that said my daughter is having surgery, and that's never anything to rejoice about...

Monday, April 16, 2012

Video overload!!

After the past few posts of depressing doctor stuff, I figured it was time for a fun video post!! So here are some of Maddy's video highlights from the past month or so :) I think she has a bruise on her forehead in all of them - she's been doing a lot of falling lately and is still mastering the art of not landing on her forehead ;)

1. Going for a little walk. Maddy LOVES getting out of the house these days, she will push all her little strollers to the front door and bang on the door until someone takes her out. She loves going to the park but is just as happy strolling around our neighbourhood. In this video, we were just picking Lana up from her school bus.

2. Climbing the playground steps, part 2!! I posted a similar video a couple of weeks ago - same steps, but a new method of climbing them! Also this video has the very sophisticated way that Maddy descends the steps. We're working on that at physio at the moment ;)

3. At occupational therapy, they have a new slide, which Maddy LOVED - she couldn't get up by herself, but she had a great time going down over and over. Lana is practicing her wall-climbing skills in the background ;)

4. Maddy loves music and does this funny dance every time she hears it :) Super cute!!

Friday, April 13, 2012

Cleft update

First of all, thanks to all my friends who offered their support and comments in relation to my last post. It was really helpful for me to vocalise in advance what I needed to say at this appointment, and I went away thinking that it went about as well as it could have, given all the circumstances. Thanks also to those who offered suggestions - in particular, a friend suggested that I bring Bernard along with me. For some reason, I hadn't even thought of that but he came along and I was especially thankful for his support.

Today, our regular cleft doctor was on vacation (!!!) and our appointment was with one of his colleagues. That meant that he could not comment on some of the specifics - for example, he did not know whether our doctor had attempted to schedule surgery yet or not. He also could not comment on why Maddy's doctor would tell me 1-2 months and write 3 months in her file (although he failed to see why I would be bothered by that, "Two or three months is practically the same", he said).

He did seem to listen to our situation and he said they would attempt to schedule the surgery in early May. Usually with cleft repairs, the children are in hospital for 4 days. Maddy's cleft is wide and she does have a theoretically "weaker" airway so we should expect that she may be in hospital for longer than that. I'm really hoping she doesn't have more than 24 hours in PICU because I really don't want to be up there on the same floor where she spent her first 4 months (with the same ridiculous visiting hours - 3pm-8pm only)...

My main frustration today was that the doctor was extremely hesitant to give us ANY contact details, insisting that if we wanted to contact Maddy's doctor, we should do so through the hotline. After telling him "that is not good enough" over and over (I've tried that MANY times before and a) people don't answer the phone, or b) if they do, they don't speak English, or c) if they do, they are pretty useless at answering any of my questions), he did give us another number to call where we could specifically pass a message on to Maddy's doctor and ask for HIM to contact US. I could see that was the best we were getting for now so we'll see how that goes. I may have more success if I ask Maddy's doctor himself next time - I know that doctors are reluctant to pass out details for other doctors...

Maddy's doctor should be getting back from his vacation next week and the doctor we saw today said he would pass on the details of our discussion and he may get back to us - but I will not be holding my breath for that either. I might wait a week or two and try calling and leaving him a message. If all else fails, I do have the email address for Maddy's hospital pediatrician and in the past, he has forwarded emails on to other doctors for me. It's not something I want to abuse, but if I really do not hear anything from Maddy's doctor within the next couple of weeks, I may need to do that.

So for now, I'm hoping that surgery actually WILL be in early May - as to whether that happens or not, we'll just have to wait and see...

Tuesday, April 10, 2012

Asking the hard questions

Even though on here, I have no problems expressing my opinions of the doctors and medical care that Maddy has had, when it comes to expressing those same questions TO the doctors, I find it much more difficult. I can tend to avoid confrontation with them and just go with the flow rather than being assertive. I think that if I were somewhere where it seemed like doctors actually valued the opinions of the parents of their patients, I might be more open with them (and indeed, with the few doctors who I feel DO value my opinion, I express them more openly) but here, most doctors seem to view parents and their opinions as more of an annoyance rather than a valuable input into the decision making process.

On Friday, we have our next cleft appointment and I've been going over and over it, the questions I want to ask, the things I want to say... people tell me to write that stuff down so I figured I'd write it here - and then maybe after Friday I'll update with how much I actually DID ask/say and what the doctor's response was.

Just a foreword: Maddy's cleft doctors has to be probably the one I am least satisfied with. He is rough with Maddy, forcibly opening her mouth to examine her cleft where other doctors try a much gentler approach (the kindest are the dentists, they actually play with Maddy, tickling her to make her laugh, and when her mouth is open, they sneak a look then). He is at times rude and condescending towards me (although at other times, he has seemed to be trying to be sensitive). And he has told me one thing while writing something completely different on Maddy's file. Unfortunately, I have absolutely no say in which doctors we see. He is one of the most superior in his department, from what I understand. I cannot go to another hospital, unless I wanted to take Maddy out of Hong Kong. So despite my annoyances, I just have to deal with it. 

The Questions:

Why did you tell me in February that Maddy's surgery would be in 1-2 months when you wrote on her file that it would be 3 months? Did you have any intention of planning the surgery before now? 

When you were given the recommendation by our private ENT last November that Maddy's surgery should be performed as soon as possible, why did it take you three months to confirm that surgery was indeed safe? I realise that we had travel plans in late December, but why couldn't the anesthetist check her before we went? After that recommendation, why are we more than five months down the road and the surgery has not yet been performed?

After the surgery, how long do you expect that Maddy will be in PICU? How long do you expect that she will be in the surgical ward? And how long will her recovery be? How soon after surgery is it safe for her to fly? (I realise that it is impossible to predict exactly how she will tolerate surgery, but in children with similar clefts/similar airways, what range should we expect?) 

Since last November, we have put all of our plans on hold. Apart from Christmas, we have not left Hong Kong. I withdrew from my university classes so that I could support Maddy through surgery. We were given the impression that surgery would have been significantly earlier than it has been (on a side note, not only have my plans been on hold - my Mum has agreed to come to Hong Kong to help us with Maddy's recovery period. Her plans have also been on hold now for the past four months). We cannot continue to be so flexible and we now have travel plans at the end of April. If you cannot guarantee that Maddy will be safe to fly before we travel, we will not be able to do surgery within the next few weeks. 

Starting from the end of May, I will be working full time for five weeks. I cannot miss any days and cannot change the dates for whatever reason. As a result, we need to have the surgery completed and Maddy out of hospital by May 21. I don't need much notice for surgery - you can call me at 7am and tell me to have her in at 8am - we just need the surgery done within the first half of May. Please do everything within your power to make that happen.

In addition to these questions, I need to also remember to a) provide him with Bernard's blackberry number so that he has a way of contacting us while we are overseas (my phone does not have roaming), and b) ask him for his contact information if I need to contact him directly. 

I would love to hear anyone's thoughts and comments on my questions - I'm continually second guessing myself. Is it actually beneficial to be so upfront with the doctors, or could I make things worse for ourselves by doing so? Should I say more? or less? I feel like I'm going through some kind of "special needs mum initiation" here...

Andrew and Will

I want to "introduce" you guys to two very special little boys.

Meet Andrew - Andrew is one month old and has diastrophic dysplasia, like Maddy. When I saw his photos, I could see it right away - he reminds me so much of Maddy as a newborn. He just came home from hospital last week, but is still on the feeding tube.

Meet Will - well technically, you can't "meet" him yet as he is not yet born. He has some form of skeletal dysplasia (the broad category given to all kinds of skeletal issues) - possibly Osteogenesis Imperfecta (brittle bone disease). The doctors are expecting that his condition may be lethal - but there is still hope that it may not be so. He will be delivered by C-section (to reduce damage to his delicate skeleton) in about three weeks.

Both Andrew and Will's families are Christian. If you have a spare minute, please head over to their blogs, read their stories and offer a bit of support - or better yet, please pray for these two sweet little boys and their families.

Thursday, April 5, 2012

Still waiting for surgery...

Hey all, I know I haven't updated this blog for a couple of weeks. Nothing much is happening here at the moment. Maddy is growing and learning new skills. Little things mostly... like we sing songs and she does the actions, she's learning her body parts, etc... her speaking skills are still the same as they have always been but she seems to be booming in how much she understands. 

We're still waiting for the surgery to fix Maddy's cleft. It's a bit crazy... In November, I thought that the surgery would be in January, so I withdrew from my classes for that semester and planned to stay around Hong Kong. Then in January, after three frustrating days in the hospital, we learned that we may have to wait a couple more months. In mid February, we got the green light to proceed with the surgery and I was told that the surgery would be done within 1-2 months, and the two month mark is next week. I still haven't heard anything about the surgery. At a later appointment at the same hospital, the pediatrician asked me about the timing for surgery and I repeated that it would be in 1-2 months. He told me that the cleft doctor had actually written in our file THREE months - so I'm not holding my breath for surgery.

The complicated part is that, due to my understanding that surgery would be much earlier than this, we have made plans to go on a vacation with friends at the end of the month. Since we are going with friends, we can't reschedule - the hotel and flights have been booked for months anyway and are non refundable. If we wanted to change the dates this late, it would cost us 50% to do so. I'm afraid that if the hospital called us in for surgery now, we would have to choose between going ahead with the surgery, or turning them down to go on our holiday. We leave in three weeks, and I'm sure Maddy would need more recovery time than that before we put her on a plane and take her overseas...

In addition, after withdrawing from my class somewhat unnecessarily over Christmas (Australian summer session), I decided then to enroll in my February-May semester as planned. Part of my course for this semester is a five week full time student teacher placement. I am planning to do that from late May and all through June. The dates are pretty inflexible, due to the timing of my coursework and the timing of the school term. I am not able to take time off from it without withdrawing from that subject (with financial penalty, and possibly a big F on my transcript). 

SO I'm hoping and praying that Maddy's surgery will be scheduled for early May. That way, we will be back from our vacation, and I will be able to be with her at the hospital (although due to the ridiculous policies at the hospitals here in Hong Kong, I will only be "allowed" to visit her from 3-8pm while she is in PICU). Even with that, it will be difficult for me as I have final assignments that are due before my placement begins, BUT it is the only way that I see it working - unless they delay the surgery until late June or even later...

Please keep us in your thoughts/prayers about this surgery - particularly that it will be scheduled at a time that works for everyone involved... that we can still go on our vacation (actually, I think we're going regardless) and that my placement will be unaffected. Also that Maddy's health will be good and she will be physically ready for the surgery, and that the doctors will do a fantastic job (our hope is that she only needs ONE surgery to repair... some kids need multiple surgeries). 
Thanks guys :)