Sunday, May 13, 2012

Day three post op - home :)

Today, Maddy was discharged from the hospital. She is doing absolutely fantastic - way better than I even imagined she would. She's eating like a champion (albeit a restricted diet) and is happy and cheeky. She doesn't seem to be in any pain at all and is even tolerating her elbow splints. I have to say, she looks kind of funny with splints on her elbows and ankles - and they really make her very hot as well!! 

Bernard stayed overnight at the hospital the night before last and I'd asked him to try and ask (emphatically) the doctors to be able to get Maddy off the IV drip (she was drinking plenty and didn't need it any more) and for her to be able to eat something other than just fluids. I know that the recommendations from other hospitals generally allowed kids to eat soft foods within 24-48 hrs after cleft surgery and I knew that Maddy would be much happier with food in her tummy. The doctors initially didn't want to allow either but thankfully, Bernard was able to convince them otherwise!! It made a huge difference to Maddy's mood. She still needed the IV cannula in her foot as she was having intravenous antibiotics, but at least she was far more "free". 

Yesterday, we thought that maybe we should take a short break from the hospital and spend some time with Lana. Our helper (who is fantastic with Maddy) stayed at the hospital yesterday for a few hours and we took Lana to Disneyland, then I came back to the hospital to do the night shift last night.

I knew that the criteria for being discharged after the cleft surgery included finishing the antibiotics and eating/drinking well and I knew that Maddy was on track (she's always been such a good eater and drinker so there wasn't much of a challenge there!) so I suspected she may be out POSSIBLY today but I thought it was more likely to be tomorrow - but when the doctor came around, he confirmed that Maddy could come home today. It was the perfect mothers day gift after a long night sleeping on a blanket on the cold, hard hospital floor ;) 

I am so amazed at how well Maddy has recovered from this surgery. In addition, we already think we can see an improvement in her speech!! After only three days!! She's been making sounds she never said before, saying new words, and saying old words clearer than she used to. At first I thought it was just me being overly optimistic, but Bernard commented on it as well.

I have so much more that I could say about different aspects of the past few days... but for now, I'm just thankful that our girl is home, she is healing and she is growing :)

Friday, May 11, 2012

Day One post-op

Day one post-op is often the most difficult. Today for us was medically filled with more good news - but held a lot of frustration for both Maddy and myself.

Last night, Maddy spent the night in PICU while I got a much-needed good sleep at home. I had a call from the hospital around 10am saying that Maddy would be transferred to the surgical ward which was fantastic news. The transfer would take place around noon and so I would be able to see Maddy then (I was still not allowed in the PICU before that time). 

I had a fantastic morning with Lana and headed up to the hospital after dropping Lana off at the bus stop at 12. When I got there, Maddy had just transferred to the surgical ward and was sleeping. I half wanted to wake her to see how she was, but I knew she needed to sleep. I noticed immediately though that the stitch that held her tongue forward had been removed, there was less blood around the mouth and nose, and her stridor was significantly less than yesterday.

Maddy slept for ages and ages - finally waking when the nurse put ear drops in at 3pm. She instantly was NOT HAPPY! It turns out that she doesn't like ear drops. In addition, she doesn't like (still) not being allowed to eat, she doesn't like her IV (it's in her foot and it hurts when she bears weight on it), she misses her dummy and she doesn't like her elbow splints. The elbow splints are pretty useless, her arms are too short and fat and they fall off every 10 minutes, but I was told emphatically by a nurse that "if she touches her mouth, the whole surgery could be a failure!!!" (I don't even think she can reach far enough into her mouth to touch the stitches - and besides, she almost never puts her hands in her mouth anyway.)

I find myself continually getting annoyed at various things at the hospital - maybe because it is such a culture difference for me. The nurses are not (all) kind and caring, they are bossy and condescending. There are some nice ones, but as a whole, they are overworked and have little sympathy for parents. I was less than gracious with a few of the nurses today over various things. 

Maddy is able to drink now and when she is drinking sufficient, she can have her IV removed. Since tomorrow is Saturday, there will only be one doctors round in the morning rather than two (morning and evening on weekdays) so please pray that tomorrow morning, the doctor will approve a) for her to be able to eat soft solid foods, and b) for her IV to be removed. Maddy would be SO much happier... Once she is ok to eat, and she has proven that she can eat well (I'm sure that will be no challenge for Maddy - she LOVES her food and was asking for it immediately after surgery!), then we can start to think about bringing her home.

Bernard is at the hospital doing the night shift and "sleeping" on an uncomfortable plastic chair in the tiny gap next to Maddy's cot. Tomorrow night, it's my turn!

And to sign off - here's a pic of her FINALLY sleeping tonight - it took her ages to go to sleep with all the lights and noise, and lack of dummy... ;) It's also the first time she's fallen asleep in my arms for months and months and months...

Thursday, May 10, 2012

Surgery Success

Today, Maddy had her first surgery. Overall, it was a success. She went in at 8:30am, the first surgery of the day, and they wrapped it up after five hours around 1:30pm.

Before surgery - all dressed in a gown made for someone twice Maddy's size!

One last ever suck of the dummy - she took it into the operating theatre with her and fell asleep with it still in her mouth ;)
To begin with, her airway was examined for the first time. It is something that "should" have happened when she was born but due to fears about cervical spine issues, the doctors did not want to take the risk then. Her airway is small, but otherwise healthy. Her trachea is about the same size as a newborn, and the walls are still slightly "floppy" - although nothing to worry about. 

For the rest of the surgery, Maddy needed to be intubated (ie, a breathing tube needed to be placed in her trachea to make sure she could breath throughout surgery). This was perhaps the most risky part of surgery, intubation can be tricky for many people with dwarfism due to small airways and differences in neck structure - but today, it went without a problem. 

The hearing tubes were also placed with no problem and the hearing test was run. At first glance, the hearing test showed no obvious problems, however we are still waiting for the detailed report. Her hearing would have been impaired by all the gunk built up inside, so hopefully just placing the tubes will address those issues. I will be thankful if she doesn't need hearing aids, but even if she does, I will just be happy for her hearing issues to be addressed. 

The cleft, too, was repaired with no issues. Overall, a "boring" surgery report - but "boring" is good!! 

When Maddy woke up, she was very dopey and still very tired and disoriented from the anesthesia. She was also pretty irritated at the amount of blood in her mouth, at the IV in her foot, and at the stitch holding her tongue forward (to make sure that the swelling does not block the airway). She is now in PICU and has spent most of the afternoon sleeping, but is doing well. Her oxygen levels are good, but she does have a low-grade fever (which is normal after surgery) and as her airway is a little swollen, she has a bit of stridor as well. She was asking for food and water, but the surgeon will not allow her either until tomorrow.

After surgery in PICU
Maddy will be in PICU probably for at least a day, maybe two. I'm hoping and praying it's only one though. I reached an "agreement" with the nurses there (who decide when to bend the visiting rules). I will abide by visiting hours IF Maddy is content and does not need me. If Maddy is distressed or upset and needs me, they will call me and I will come regardless of the time or the policies. I will also be calling them in the morning to see how she does overnight. Frankly, I need a good night's sleep and I have barely seen Lana in two days. As much as I don't like being separated from Maddy, I think maybe it will be good for me to look after myself and my other little girl tonight and tomorrow morning. Hopefully Maddy will still be sleepy and a bit dopey and might not even notice...

Wednesday, May 9, 2012

Ready, set...

This morning, we arrived bright and early at the hospital for Maddy's pre-op assessments. She had to meet with the cleft surgeon, the ENT surgeon and audiologist, the anesthetist, and she had to have a blood test to confirm she was infection-free.

The morning got off to a slow start and we didn't see our first doctor until around 12:30 - it was the cleft surgeon. I had written out a long list of questions and got the answers to all of them. In short:
  • Surgery is scheduled to begin at 8:30am
  • It will take between 4-6 hours
  • The schedule will look like this:
    • First, Maddy will be anesthetised but not intubated. 
    • Next, she will have a full airway assessment (endoscopy). 
    • If all is well, the breathing tube will be placed ready for surgery. 
    • After this, the grommits (hearing tubes) will be placed in both ears, and the gunk cleaned out.
    • Then, the brainstem response hearing assessment will be conducted
    • Lastly, the cleft will be repaired.
  • I will be able to take Maddy into the operating theatre and be with her as she falls asleep
  • When Maddy is waking up, if she is content, they don't allow parents in - but if she is distressed they ask the parents to come in to be with the child
  • Maddy will go to PICU immediately after recovery and will be there until they are positive that her airway is stable and not obstructed by swelling etc
  • After surgery, Maddy cannot eat or drink anything for the first 24 hrs, after that, she can take clear liquids only 
  • After surgery, Maddy cannot use her pacifier (dummy) any more, and she'll need to use elbow-splints until her stitches have healed
After seeing the cleft doctor, we went to see the ENT. We have a new ENT since our regular doctor is on leave until August (originally, our surgeon wanted us to wait for her to come back but we said no way!) - I have to say, I might like him even better than our regular ENT! He was very gentle and approachable, two qualities that are lacking in many doctors in Hong Kong. He confirmed that Maddy would need to have the hearing tubes placed. Much of what we talked about, I'd already heard from the cleft doctor. 

Next came the anesthetist - nothing new there either. From a physical check, Maddy seems good to go - that leaves one last thing: blood tests.

To begin, getting blood from Maddy is like drawing blood from a stone. It took thirty minutes for a team of doctors and nurses to get enough blood for the tests. Fortunately (or unfortunately? I'm not sure) they kicked Bernard and I out for the procedure but I think the whole ward could hear her screams. She had multiple pokes and each of them is a sizable bruise. When we got her back, she was so sweaty from crying so hard. She wasn't crying when I walked in but the moment she saw me she let out a pitiful sob and spent the next 30 minutes whimpering.

For some reason, the blood work was the last thing of the day - it was 6:30 by the time it was over - and the nurses wanted us to wait 2-3 hours for the results. Since we wanted to see Lana before she went to bed, we asked if we could go home first and they could call us if they needed to. There are three possible results for the blood work: pass, fail, or inconclusive. If it's a pass, we won't hear from the hospital at all and we will be at the hospital at 7:30am to proceed with surgery. If it's a fail, (if Maddy had an underlying infection), the hospital will cancel surgery completely. If it's inconclusive, we'll have to wake Maddy to take her in to get more blood taken. 

So if we don't hear from the hospital within the next hour, we can assume we're good to go for tomorrow morning. I will be so glad to have this over with...

Tuesday, May 8, 2012

Almost there... (plus Phuket pics!!)

This time tomorrow, we will be in the hospital. Probably not doing a whole lot - but we will be there, waiting, doing any last minute tests before surgery. Maddy doesn't have surgery until Thursday so I am not sure whether we will need to stay overnight tomorrow or not. I think that depends on what time her surgery is. If it's in the morning, they usually like the kids to stay overnight so that they are ready to go bright and early. 

I think since the last post I wrote, we must have had lots of people praying for us because I'm feeling a lot better. As much as PICU scares me, I realise that it will just be temporary and there's not that much I can do to change things. I have written a list of issues I want to talk with the doctor/hospital about, why I don't think it's healthy for Maddy to be separated from us and I plan on discussing the issues with the relevant people - but I also know that ultimately I can't change the system and may have to just deal with it. 

Maddy has been pretty healthy, although she has had a runny nose which spread to the rest of us. As always, Maddy has the most mild case and Bernard has been sickest out of us all. She is virtually 100% recovered and I'm hoping that surgery will proceed as planned. 

I'm been getting a bit of uni work done the last few days after a hugely non-profitable week last week. Still have heaps to do but I know at the hospital, there'll be lots of dead time where I'm stuck hanging out while Maddy's napping. Hopefully I'll be able to work then. 

Just before I sign off, here's a bunch of Maddy-pics from Phuket.


Enjoying the pool

Looking pretty

This is all the kids who we went with. Maddy is older than the two boys closest to her.


Feeding an elephant
Jumping into the water - Maddy LOVED doing this by the end of her trip, and now wants to jump of the sofa the same way!!

Where's Maddy?

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...