Short Update

Well, I didn't get to snap the picture without the tube. Jules will get that pleasure this afternoon. They are definately removing the breathing support (and have effectively done so already by the changes they have made to the ventilator). Instead of the ventilator all the way into his lungs, they will be adding a tube that pushes air into his nose. Hard for me to describe, but better than having the tube down into his lungs. They are also deinfately starting feeding him milk today. So good all round. No progress on the cause, or on whether its actually now repaired itself. More of an update tonight. Jules is well, and happy to have no stitches in and is recovering well.

Another good night

Will has continued to improve overnight. He has gone down slightly, however, while his girth hasn't changed, he looks physically smaller. His skin is not stretched so badly and has lost its reddish colour. Interestingly, his is now showing a trend of being smaller in the morning, and bigger in the afternoon. He has lost a little weight, but is still heavier than his birth weight. He's currently at around 3.15 kg. The doctors think he should be around 2.6, so the volume of fluid is around 600ml. He was very active this morning, and created a but of a stir when he tried to pull out his ventilator tube. I don't blame him. It looks very uncomfortable. (sorry took the photo with the flash on, but I think its quite funny). The glucose has seemingly been fine. When I came in they were just finishing changing his nappy, and its fair to say everythings working fine. Impeccable timing on my part I think. They are still talking of both taking out the ventilator and giving him milk today. I've been kicked out while the senior Doctors round is happening. Presumably when I get back in I'll know the answers to those questions. If so, I'll have a photo Will with no ventilator when I get back home. Julie is currently at her Doctors clinic getting the stitches out. She is a little nervous about this so please pray for her. I cannot reiterate enough our great appreciation for everyone's support. We are convinced that God answers prayer, and so we feel so blessed to have so much prayer being offered for Will and for us. Another update shortly hopefully with results from the current Doctors visit.

How are the other kids coping?

Many people have asked how the kids are coping, so just a short one on them. Both Jack (6) and Cleo (4) have a desparate desire to meet Will (which unfortunately impossible while he's in the NICU). They understand the Will is sick and they pray for him often. Jules was very moved this morning when, without any prompting, Jack came over to her and asked if they could pray for Will together. It was very touching to see him exhibit such concern for the brother he has never met. As another example, last night I was apologising to the kids that I wouldn't be around to put them to bed again. Jack asked me why. When I explained I was again going to the hospital to see Will, he didn't complain at all. Rather, he just wanted to know when he would get the chance to come with me to see Will. So in summary, to date the kids have handled the situation very well. They've both been very patient with us, not complaining at all about the lack of time we've given them in the last week. We continue to thank God for the great blessing Jack and Cleo have been in our lives.

An afternoon visit

Both Julie and I have spent time at the hospital separately this afternoon / evening. We are trying to spend time with Jack and Cleo to make sure they don't feel completely ignored by their parents. Will is continuing to look better. Still of course the issue with the bloated tummy, but they have removed one of the IV tubes in his hand so he now has a free hand. Removing this has given him a new level of freedom. I managed to snap a one handed photo of him holding my hand. All things going well, tomorrow may be a big day for Will. They're considering taking out the ventilator completely. Of course this will depend on how he goes tonight on the reduced support level, but its great that its even a consideration. They're also talking about giving him milk for the first time tomorrow, which is a bit faster than we expected. Not sure how they determined he was ready for this, but again I'll take it as a good sign. I've had a few independant questions on Will's condition, so I figure I'll just answer them here. Firstly, it would appear that this is a very very unusual case. While Ascetes is not that uncommon, the type Will has seems to be a one of a kind. None of the Doctors have seen this before, and I've been asked if I can provide all my video and photo evidence for training purposes. Likewise there is very little reference to this in any other case history the Doctors have been able to find. Secondly, the small black marks on his tummy, are just texta marks. They are the guides for measuring his girth. He's had a small needle in his tummy to remove some fluid for the initial test and that's it. Finally, how do they expect the fluid to dissipate? Good question. They've indicated that the body will "process" it over time. How, why, ???? Don't know. Today's video shows Will moving around a bit more, and shows how much more freedom he gets with the hand freed up. 24th May Will with a free hand

A special note of thanks

I just want to make a short special note of thanks. This is of course very hard to do when so vast a number of people are supporting us. I recently read the comment on our blog from Sonia and Jong in Tokyo. I have followed their struggle for some time through our care group here in Hong Kong. Even the idea of putting together this blog was based on their experience. The other day they put this comment on our blog. "Dorothy told us about baby Will and we are praying for you guys and Will from Tokyo. Our baby Isaac was born at 23 weeks and is still in NICU as well so we fully understand how difficult it is. I will ask others to pray as well.God bless,Sonia and Jong" www.soniaandjong.blogspot.com Can I encourage you all, if you're currently spending time praying for young Will, to offer a prayer for Sonia, Jong and Isaac. Their continued strength and faith through their ordeal has been a great source of support and inspiration to us. Thanks Sonia, Jong and Isaac, you're a great blessing to us all. You continue to be in our prayers.

A big change in the level of support.

While we were sitting in the waiting room typing the last update, the senior doctors were doing their checkup on Will. When we returned to his crib we discovered that they had completely cut out the morphine and the had changed his breathing support completely. Now he breathes on his own and the machine supplements him if required (synchronised mode). This is a wonderful step forward. We are now praying that little Will fights on and takes over his own breathing completely. Praise God. In addition, we spoke to the doctor again who had spoken further to the senior radiologist. It would appear that the cyst is definately the result of the problem not the cause. It is therefore nothing to be worried about. The news therefore continues to be positive. As a small piece of trivia. The doctors have now assessed that excluding the rogue fluid, Will would have been born at 2.6kg's. In the old scale that's

No change overnight.

The good news this morning is that Will is still doing fine on the reduced levels of support. Still on 10mg of morphine with no other sedative. They have also further reduced his breathing support, however even at this lower level it is still considered full support. We are now waiting to speak to the senior Dr. Apparently the ultrasound done yesterday picked up some form of cyst inside his abdomin (not in any of the organs). Not sure whether this is the cause of the problem or caused by the problem. They also had to add some fluid containing something called albumen as he has passed huge amounts of urine and has lost a lot of this (which is apparantly necessary). Today they will also try feeding him through a straw into his stomach. They will start with gluccose water and see how he takes it. Finally we had a bit of eye opening action this morning. Just the tiniest peaks, but quite exciting for us. That's about it at the minute.

End of the day - Will keeps on fighting

Jules and I went to see Will this evening, and were very pleased to see his continued improvement. The first surprise to us was that they had moved him into a different crib. No more gladwrap (cling film for the English). They had previously had him under gladwrap as they needed to have very easy access to him. So this is a good sign. Other positive steps tonight include: 1) they have completely taken him off the sedative, 2) they have reduced his morphine by 50% ; 3) they've further reduced his the ventilator. In fact at one point while we were there they took him off the ventilator together to clear out a tube. He continued to breath with no issues. They do not want to do this altogether at this stage as they believe his breathing may be too eratic / unstable without ventilation. However, very positive that he is able to breath on his own. His girth had not gone down as yet, but it had also not gone up. I wonder to myself how long it takes to actually go down after being that stretched so much. He is still producing large volumes of urine. He was up to about 650mls at around 2pm. Some time after that they changed the bag, then we we returned he was already up to 250mls. Big effort. A final video for the day, which shows the change of scenery. 23rd May Will at the end of the day

Definately moving in the right direction

We have just come back from the hospital after something of a frustrating morning waiting to see Doctors. In the end we met with the senior surgeon and the Doctor on the ward. Both were very positive. In fact, The surgeon (Dr Chan) was genuinely excited when he pushed down on Will's stomach to see it so soft. He spoke in a very animated way to all the staff around (in Chinese), then told us that this was very good progress. He was processing the fluid by himself. The likely synopsis is that he has a small hole somewhere in the bladder or related system. The fluid (now confirmed - pretty much - as urine) has been leaking out into the abdomin. The cathetor is now functioning correctly (Will's now passed 600+ mls of urine in less than 12 hours), and it is possible that either this is reducing the impact of the hole, or that the hole is healing naturally. Will is to have an ultrasound this afternoon (around 3pm) of the bladder and associated system to see if they can find the hole. If not, the only way of finding it will be to have a more extensive x-ray style test that relies on more injections of tracing fluid, and moving him to another building. They will not do this until he is further stabilised (i.e. breathing by himself) unless things get dramatically worse. They also noted that the blood tests (done 4 times per day) were showing strong improvement in the work of his Kidneys. While the blood tests had initially been ok, they were getting better and better. This is likely to be as a result of the reduced pressure on the Kidneys. After this update, as we were leaving the hospital, we ran into the Surgeon again, who was retelling Will's case to another Doctor in an equally animated way. Clearly strong improvement. Jules and I are now feeling very comfortable with the situation, feeling that God is definately with us, with Will and with the Doctors who care for him. The current timeframe (optimistic best case) is that over the next 2 days Will gets progressively better such that they can ween him off the ventilator, and the sedatives. This has begun, so we'll pray that this happens. At this point they will start to feed him. Jules is now off using the pump thingy in preparation. I've copied another photo or two, and will subsequently attach another couple of short videos. Short Video's 23rd May video of Will - 1 23rd May video of Will - 2

Some time with Will

We still haven't managed to speak with the doctors as they are still doing rounds. We look forward to talking with them as the nurse tells us that they have a lot more test results. It was very nice just spending some time with Will. His hair is so soft and so long. They have started to reduce the amount of sedative which means we will hopefully see a bit more movement, and he may actually get some awake time. This is another positive sign in his recovery. About half an hour or so to get the results. I will keep you all informed.

A very short visit

We turned up to the hospital just a few minutes ago.  The staff were not quite ready for us to visit, but let us in for a short visit.  We are now sitting outside waiting for the doctors to finish their rounds.

So no update from the doctors, but we can let you know a few small things that have given is great hope.   Firstly, he has gone down to 39 cm.  This is the smallest he has been since he was born.  Also, it is very clear that his abdomin is not as tight.  Even more movement than I  noted last night.   Finally, the breathing support has been reduced again and is now at its lowest level since birth.

So from our two minute visit, all looks to be improving well.

As for Jules,  she spent quite a comfortable night at home.  While the care in the hospital was fine,  there's no place like home.

We were also blessed by one of our friends (Dorothy) who went to 'bumps to babes' and got Julie a pump thingy.  She's not used one of those before as both the kids refused to take a bottle (good little kids aren't they).  She gave it a go this morning which seemed to work ok.   I can understand why this is needed now, but in future when he's home, i'm not a fan (wouldn't like to take away my excuse not to get up in the night now would I).

Will is not yet ready for food, but all things going well he will need it soon.

Thanks for your continuing support and prayers.  Jules and I are both feeling quite calm and peaceful about the situation, which is a great blessing in these circumstances.

Ps.  Dave,  thanks for keeping a little humour in our lives.  Your "rude" comments are of course welcome.  For all the non Australian people reading, please don't be offended by Dave, he really is a nice bloke despite what everyone says. 

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Video as promised

As mentioned earlier I took a short video this morning. Now I've worked out how to do this, I might take a few more. We took this while he was moving around a bit. I didn't get the best bits as I was more interested in watching than videoing. Will video

Now a small step forward

Just a tad of good news to close the day. They have not finished all the tests, but at this stage it looks like quite likely that the fluid is urine. (Not sure why it is so hard to tell, but it seems it is). They tell us that tomorrow they will know for certain, and they are starting to work through ways of identifying the cause of the urine in the abdomin. Tomorrow afternoon a specialist with a fancy ultrasound will come up and scan him. Now for the slightly better news. On looking at his abdomin, it appears physically to be less tight. While earlier today and yesterday there was a shiny sheen on it and very little movement, there are now slightly more dull patches that seem to move when he breathes. I noticed this, then the Doctor mentioned that he and the specialist had noticed this also. The actual diameter is not changing much, but the tension looks different. I think this is quite positive. He is still passing large quantities of urine since the new cathetor has been inserted. The Doctors views this as either a) very positive as he may be processing the liquid; or b) kind of concerning as it may mean he is becoming dehydrated. By my read, 400ml's in the 4 or so hours between my visits. Finally, in the ever chaning pressure being being applied by the breathing machine, he's back down to the lower setting. That's kind of good, but they are now saying its not really indicative of anything. We are praying that the extra urine, and the slightly lower tension are connected and that he is starting to process it away. We will find out tomorrow morning. Next update tomorrow after we visit him. Unless there is another change of plan this will be around 10am HK time.

Small backward step

We have just been up to see Will again. Unfortunately they have had to increase the breathing assistance again as he has again started to expand. No conclusion on the fluid at this stage. Still seems to be a choice of 2, urine or chile. The latter is produced by the lymph system. Possible that either of these systems is obstructed and therefore leaking. A number of the tests are back, but nothing conclusive. The most positive result today is that one test concluded that there was not a bacterial infection. We will be back later today to check on Will and get more of the test results. At this stage I am waiting in line to pay the bill as Julie is checking out. She is still in a bit of pain but we feel she will be more comfortable at home. It is only 10 minutes door to door from our house to the hospital, so no real issue there. For those thinking of visiting Jules, please note this change of her location. Will is still fighting and is a lot more active today than yesterday. Thank you so much for your continuing prayers, they are a great support for us as we continue to await diagnosis.

Small advance on the theory

We spoke briefly with the senior surgeon again this morning while up visiting Will. They are still waiting for the tests to be conducted, but they gave us a few minor updates. They have re-done the catheter. This is apparantly very hard as he as a) small, and b) swollen. The good news is that he has now started passing urine again. The theory is still that the fluid is urine, and that it was caused by some blockage. To be determined of course on the test results. If it is urine, and he is passing urine, then no invasive surgery will be required. They will simply let him continue to process the waste himself. They don't want to remove any more of the fluid to reduce the risk of infection. So kind of good so far. A brief update on Jules while I'm typing. There now seems to be some question as to whether or not she'll come home today. They have now suggested it is our choice. We tried to determine what factors we would take into account, but it was just a little tough. Really the first language barrier we've had the whole time we've been in Queen Mary. In the end we elected to have Julie come home today, only to find out that this was actually based on the Doctors discretion anyway. We'll see. Today's picture of Will attached. I have a brief video for you, but cannot work out how to post that here, so will have to update it on a homepage of some sort, then attach a link. Later

Current theory

Test results are not back yet, however we have just spoken to one of the senior Obstetricians (Prof Lau). He says that the current thinking is that the fluid is actually urine. As a result it is possible that the problem stems from some form of perforation in the bladder or the urinary tract. If this is the problem, then Will may need surgery to repair the issue. They will drain the fluid when they have confirmed this. They also need to determine if there has been any issue with the kidneys as a result of the pressure. At this stage they still look good, but it needs to be checked. If there is some issue this is a more serious concern. They will know some time this afternoon whether or not this diagnosis is correct. They hope it is because at this stage they have no other theories as to the cause. It is also not the worst case scenario which is good news.

Tap in

The tap has been completed.  They did not leave a catheter in to avoid risk of infection. 

The fluid was a straw colour similar to urnine.  Still no confirmation on what it is.  They removed 250cc (I think this is the same as ml's).  This released the pressure somewhat, however Julie tells me that he is still quite bloated.  Unfortunalety I didn't get to the hospital in time to see him.

Will's vital signs were all good during the procedure, so no immediate problems.

They decided to do the procedure first thing as they were concerned about the pressure on the kidneys, bladder etc. as he had stopped passing urine during the night.  They do not think that the fluid is urine, rather, they think the pressure stopped blood flow to the kidneys and therefore Will wasn't able to process as norminal.
Doing the procedure early also avoided conflict with their daily operating schedule.

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Not so good overnight - urgent procedure

Very quick one as I'm heading to the hospital immediately. Will's abdomin has grown overnight, and they are going to do the tap immediately. They are prepping him for bedside surgery. Julie is already in the waiting room on level 10. I'm on my way. Please pray for Will and for the surgeon that God will guide his hand.

Afternoon update

Afternoon update Will's status is still relatively stable. He has remained at the same size (abdomin around 40.5cm). This morning they reduced the pressure on the breathing and they removed the anti convulsant drugs. Will coped fine with both of these changes. The next step is to tap the fluid tomorrow. They will then send this off for testing which will take between a few hours and a few days depending on the test. They will put some form of catheter in to control the flow of the fluid. They will not release all the pressure at this stage. Again this procedure is not without risk, but really its the only way to determine what the problem is. So please continue to pray for Will through tomorrow as this procedure happens. Sorry that I can't tell you the time, but at this stage I don't know. As an update on Jules, she's feeling quite a bit better. She surprised herself by enjoying a bowl of conjee and is chewing down on a plate of sweet and sour pork with some un-named vegetable as I type. Amazingly they are suggesting that she will check out tomorrow. We were a bit surprised by that this morning but are now feeling good about the idea. At this stage, my next update will be tomorrow unless there is a change in Will's status. Just a side bar note. We heard today that many thousands of people prayed for Will this morning in many churches in Hong Kong, the US and Australia (probably 1000 in our home church, ECC, alone). Thank you so much for this. We feel that there is no doubt that God is listening and is working through this situation.

Mum gets some time with Will

We managed to get Jules up to see Will. This was the first time to since the birth that Jules had seen him, and its fair to say it was a bit difficult for her. It was also the first time she had moved off her back. Initial thoughts about having a C section is that, if you have a choice, take the regular vaginal birth. She's in quite a bit of pain and can't understand why in the world anyone would by choice do it. Will is still in stable condition. No change from the earlier notes on his condition. More photo's comming this arvo.