Scoliosis and other stuff

Wow, it's been a full month since my last post! It's been a great and busy month. We had two weeks in Australia which was fantastic, then since we've been back I've been trying to catch up on uni work (I'm still behind!), we've had a bunch of appointments for Maddy, and we've been trying to enjoy summer as well. Also, we have a very special 2nd birthday coming up in two days! 

We've had a bit of a hard time finding shoes to work with Maddy's new insole orthotic - her feet are so small and wide. We have a pair that are ok but are really a size too big for her. We tried to find a smaller size, but they don't sell them in a solid rubber sole here in HK - so the pair that did fit her well didn't support her feet as well as they needed to. I've ordered some from the US that should work, fingers crossed! It's always a risk when you can't try them on before buying them.

In other news, Maddy had her orthopedic appointment yesterday. She sees two teams of orthopedic doctors - the spinal team and the pediatric team. The spinal team follows up on her spine issues (obviously) and the pediatric team follows up on everything else. The appointment yesterday didn't go as well as I'd hoped. 

First of all, Maddy's scoliosis is progressing. I'd suspected as much since I'd noticed a bit of a hump in her upper back. It is currently at a 32 degree angle. It's too early for surgery now, but we will keep an eye on it and within a few years, it's likely that she will need a spinal fusion.That's one surgery I was hoping to avoid, but I know it's fairly common for people with diastrophic dysplasia.

Secondly, the pediatric team are still quite concerned about Maddy's hips. The joint is still very shallow and they are concerned about possible dislocations. If the joint really is at risk of dislocations, she may need a "hip containment surgery" to protect the joint.

For both of these issues, we will need an MRI in order to get more information. This should be scheduled for the next month or two - and I'm not looking forward to that! For MRI's, they need to place the IV cannula, which is always quite tricky and traumatic for Maddy (and me!!). You can read about our last cannula/blood test experiences here and here. The MRI in itself is fine, and Maddy tolerates the sedation well too - it's just the IV which is rough.

I was going to add some pics but blogger is taking forever so will add them next time. Hopefully I'll update sooner than next month!

Cross Face

Yet again, it has been way too long since I last updated. I have lots to share - in brief, Maddy has new shoes! Her AFO's have been retired and replaced with an orthotic insole that are placed inside regular shoes. Also, her speech is starting to develop - although she still has a long way to go there. We will be heading back to Australia tomorrow for a brief visit, just me and the girls. 

I mainly wanted to share this cute video - Maddy is turning into a little actress, making faces at will. Here she is, showing off her "cross face".

Enjoy!

Speech

It has been so long since I updated this blog! Maddy's surgery went fantastically well. I had heard and read that the first two weeks would be hard, but Maddy seemed as though she was back to "normal" within a couple of days. She would still get frustrated by the arm splints, and by her inability to eat regular food - also once she came home, she asked for her dummy more, probably because it was part of the whole bedtime routine. In the past month since surgery though, she's adjusted well. She no longer needs the splints and can eat almost anything (although we have to keep really hard, "pointy" things out of her mouth still). She has also stopped asking for her dummy.

I do think that in the last month, there has been some improvements in Maddy's speech. She seems to be saying a lot more now - however it's still not very clear and few people besides those of us who know her best can understand her. Some words, she can say perfectly (eg, Daddy, Yeah, No, Hi, Bye...) but most are a bit of a stretch (eg bubble is "guggle", yoghurt is "ger", bath is "ba" or "ga", and so on...)

Since Maddy is now getting close to two, I think it is time to put her into speech therapy. This will be her first private therapy - everything else so far, we have had through the public system. I would have done speech through the public system as well, except since we are on the waiting list for therapy at the early intervention centre place, we are apparently ineligible to do anything more than to just wait (I don't understand why we are eligible for public physio and OT in that time but not speech, but ah well). 

I've been looking around a bit and some places are really expensive. One place wanted to come to my house and they would charge me $500HKD (around $65USD/AUD) for 30 minutes travel round trip, another place will do an assessment for $5000 (around $650). These places are "expat places" where the therapists are all Westerners, as are many of the clients. I decided to look around for something that was a bit more in our budget. I finally found this one place and the therapist spent 20 minutes talking to me on the phone yesterday (and didn't charge me ridiculously for that!) so we're going to try there. She will have her assessment on Saturday.

Maddy's speech is something that I have been concerned about for a long time and hopefully we will see even greater improvements soon :)

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 :)

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...

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...

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...