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The Turners in Hong Kong
Tomorrow , Tuesday, 6am Hong Kong time, will be the fourth time Will’s catheter will be removed. We are praying that the past few days of bladder control training has paid off and Will has a strong, steady, straw-coloured stream! Wanting to be prepared, I asked the nurse what was the next step if he was still ‘dribbling” and she just smiled. Quizzically I asked again and she told me the doctor thinks that this will work and we won’t need to do anything else. Although I am not getting my hopes up it is the first time this doctor hasn’t covered all his bases and kept his cards close to his chest (can I use any more metaphors?). Maybe she wasn’t supposed to let his optimism slip!
I took some lovely photos today. Will’s face is getting chubby, in my opinion, and his ears are also a little fatter. “Fat ears?” I hear you say. Fat in that they are no longer at one with his skull. However, as Harry is not home you will have to wait for the photos and for tomorrow’s good news. I won’t say bad news as even if we don’t get good news tomorrow there will come a day when we will, it just means waiting a little longer.
I’ll phone Harry at midday tomorrow (after I’ve seen Will) and he will update the blog then. If you’re a blog addict, as several people have confessed to being, then log on then to find out the “stream report”. Again, thanks for your prayers, I look forward to the day when we can joke with a teenage Will and tell him half the world was praying for his bladder and his “stream”!
Love Jules.
I guess I should start by apologizing for the lack of updates this week. The reason for our tardiness is good though because with Will in the house I am suddenly a mother of three in action and there is no time to be sitting at the computer, or drinking a cup of tea, or sleeping more than two hours at a time, or watching a movie in its entirety! And I am delighted!!
Today Will has returned to hospital to have his catheter removed, hence I’m back in the saddle and doing my emailing and blog updating. Will and I dropped Harry off to Jack’s school at 8.30am on our way to the hospital and as I collected Harry at 10.30am he asked if Will was in the car (you can’t see in the car seat from the front seat). I said “You must be dreaming!” because of course we need to have him assessed by all and sundry and observed for many hours before that would be possible. It is great that the team are so conscientious, I just need to be more patient! Would you believe I met another Dr Chan this morning – this time a woman. She was very helpful and explained all the procedures Will still had to have and why.
What are they? OK, first he had his temperature taken – not too high, therefore no infection. Second, they collected a urine sample which they will test for bacteria. Third, they will take some blood to check his kidney function. Fourth, he will have an injection of antibiotics (super strength on top of his oral Antibiotics) before fifth, Dr Chan (the pediatric surgeon) will remove the catheter. Then we play the waiting game. Will’s nappies/diapers will be weighed and assessed against his regular urination ability (which is well charted – even on his home leave stints we had to document it every four hours). They are keen to know whether he can wee and whether it is dribbling out (that is, with no bladder control) or whether he can allow the bladder to fill and then use the bladder to contract and pass a wee properly. They will then do the “tap” test (imagine John Cleese in “Fawlty Towers” checking the walls for hollow sounds) to see whether the bladder is empty (sounds hollow) or full (sounds hard). If Will is fine after 1, 2, 3, x, y, z number of days, he can come home. If not, further tests will be done, like another contrast or an ultrasound. Problems could be due to swelling after surgery, dodgy bladder after the blockage in the urethra made it overfill and then leak or burst or something, or debris from the zapping of the valve in the urethra. All of this info was given to me by Dr Chan (the woman) in less than 3 minutes – fantastic. I make no comment on the ability of men vs women to pass on vital information!
So, that’s about it. When Harry gets home tonight we will put some pictures of his home leave on the blog. The kids had a great time with Will, Jack read him books and Cleo sang him songs. Both were very helpful running and getting me things when I had my hands full. AND, Jack managed to get out of being held in at recess time (because I hadn’t signed off his homework) by thinking quick and saying it was because I was so busy now Will was home for a few days that I had no time for such things. His teacher fell for it, and it’s true I did forget but good on Jack for coming up with the excuse!
OK, I’m off to be patient, will know more this afternoon so do check in later! Love Jules.
A bit of a dark one of him sleeping. Not even a black rainstorm was going to keep him from coming home. In the house. Isn't Cleo happy to see him. Jack will be too I'm sure when he gets back from school. A pretty good birthday present 'eh.
In Dr Chan’s absence (he’s been on holidays for the past 10 days or so) I think we have been lulled into a false sense of security. I know I for one was thinking: “Will’s tummy’s going down, he’s breathing on his own, he’s throwing down the milk and putting on the weight so he must be ready to journey back to Shouson Hill with us any day now”. Well, after the nurse organized an “interview” with Dr Chan I have to say that this is not in fact the case.
Apparently the contrast/X-ray on Thursday will have two possible outcomes.
Outcome No. 1: The fluid they inject into the catheter and up through the urethra and bladder will show a leak. If this is the case the catheter will be changed and Will will be placed in the queue for surgery. This will take one to two weeks to come about. He would then have a general anesthetic, Dr Chan would cut through the skin (somewhere on the abdomen I assume) and suture up the leak.
Outcome No. 2: The fluid injection up the catheter would not show any leak. I thought this would be a good thing and they would just say “Well there you go, who knows what happened, go home, live life, come back if you see anything out of the ordinary.” But, apparently an alternate cause of the problem is that the catheter is holding open a valve that has accidentally grown in the urethra, which without the catheter in would stop the urine from flowing out. (Dr Harry suggested this to me a few days ago and I didn’t even acknowledge this as a possibility so I will have to defer to his medical brilliance and suggest that perhaps medical school should have been his destination rather than IT, after all. Although I am still not going to listen to his “hole in a lung theory”!) So, if this is the case they will still do surgery but of a different type where they insert a scope into the catheter and go in and look at the area to see if they can find said valve. If they find it they would then electrify it so there is no longer a valve doing the wrong thing. This procedure would also be under a general anesthetic and would take one to two weeks to happen.
After each of these procedures I imagine there is a recovery time so it looks like Will is in Queen Mary for a good few days yet.
So, although I was a little shocked that Will has to have surgery no matter what (at this stage) I am feeling quite calm and just praying that God will guide the doctors’ hands and take care of Will through any of the procedures. God has held him up so far and I have no reason to doubt His ability, I just need to stay patient and faithful.
I also found out that they ran a culture on the catheter yesterday and discovered bacteria. Because they don’t want to change the catheter before the procedure on Thursday and because it involves squirting something back up the catheter (which could take the bacteria with it) they have started Will on antibiotics today as a preemptive strike. He is fine, no temperature or symptoms but they want him to avoid infection. I’m pleased that after the procedure on Thursday he will get a new catheter so he will have a fresh start. This one has been in since day 1 which is a long time in Dr Julie’s opinion.
Another titbit of information I gleaned today was that Will was moved out of NICU into Special Baby Care on June 1st! This is exciting as it means he’s now considered very stable. The reason we didn’t know of the change in status was they’ve kept him in the NICU room as the level of care is higher – one to one nurse to baby ratio – and I think they like him! Please pray that he can stay here for as long as possible as the care is better – he can stay as long as no other babies need the spot.
Finally, someone has commented on the pink wraps Will is in! Good question Katie and Stephen from Dublin! I think Queen Mary got a bargain basement price on pink flannelette fabric from somewhere in China. All the sheets and wraps in the NICU and Special Care are pink, I think the kids’ ward might be the same and it is the same fabric I got to wear when I was admitted and in the Maternity ward. Will has been wearing blue outfits so I’m confident that he will grow up strong in his masculinity despite such a covering in pink!
As the weeks go on, I am still amazed at everyone’s desire to read and stay informed on Will’s condition, thank you for your continued prayers and love. Every prayer makes a difference and glorifies our wonderful God, thank you, thank you, thank you.
Again, I took more photos but these will have to wait until Harry loads them up tonight. Hope you’re all well, have a great day wherever you are, love Jules.
I guess it is about time that I take a turn updating you all on Will’s progress. Harry has done a marvelous job on the blog, keeping everyone up to date with Will’s latest and greatest achievements. Initially I think it was a distraction for him while Will and I were both still in hospital and Will was still critical. It was a great way for him to contribute something at a time when he could do nothing else but pray and wait. We have both been amazed at the response we’ve had to Will’s condition through this blog and have been blessed by 24 hour coverage of prayer as each part of the world wakes up and then goes to sleep, passing the baton to the next timezone. I received an email today from a friend’s Mum in Texas saying she’d just hung up the phone from two friends in the States (whom we have never met) who were sitting down to pray for Will as she had phoned them. It really is a blessing to be held up to God by so many friends, but even more so by strangers. Thank you so much for glorifying God, having confidence in His ability to heal Will and nurture us, through your prayers!
So, how is Will today? Yet another day on a roll I feel. He is down to 35cm in the tum and his feeding tube is out. He has been able to consistently process the milk from each feed (meaning there was less than 2mm in his stomach every time they went to feed him) so no need to monitor that anymore. I gave him his second breast feed this morning too. Although he was asleep for the entire two hours I was there I managed to get him to take 15 minutes from each side. I feel he latched on better today than last night so I’m confident he’ll be able to breast feed without too much drama. For those who don’t mind praying with the word “breast” in the sentence it would be great if you could ask God to help both Will and I adjust to the mixed bottle/breast and expressing/breast routine we’re now on.
Will had another cute outfit on today, although it was on backwards – I don’t know if this is because it is too big so the nurses, wanting to cover his chest put the high side to the front, or whether it was a mistake. I don’t like to push things on the questioning front and he still looked cute so we’ll have to cope with backwards clothes for today. Harry will load a photo later tonight. I can email but loading a photo is pushing my computer skills way too far!
OK, I have now officially entered the world of the blog, thank you again for reading today’s update, I look forward to having time to respond to everyone’s comments individually but for now, know that I appreciate every single message, thought and prayer for we Turner 5 up here in Hong Kong.
Have a great day! Jules.
It's kind of exciting doing the morning shift as you get to see the ovenight progress (although you do run the risk of being booted by the morning round as is the case right now).
This morning Will's girth is down to 36cm's. After a couple of days stable on 37 its great to see him going down again. He's also down to 2.66kg. Assuming he hasn't lost weight since he was born and that he hasn't out on weight either, that infers there isn't much fluid to go (says doctor Harry).
His feeding has also steadily improved. He took 40mls this morning and i'm about to give him a similar amount shortly. I am now quietly confident that they will take the drip out tomorrow. That is my prayer now.
They daily take out the nasal canular for periods of time to are how he goes. Apparantly when they do this, after a period of time, he starts to struggle with his breathing, so still some work to go there.
Its easy to be impatient, but we are now getting used to working on God's time. Definately a lesson in patience and trust.
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Sent from my BlackBerry Wireless Handheld
I've just come to the hospital, and had to come straight back out to give you all a short update. Will's tummy is no only 38cm's (still sounds big, but compared with 42 on the first day its a huge improvement). He also had completely processed all the food in his stomach when they went to feed him so they are planning to step up his feeding. I'm just so blown away by our God who answers prayer.
Today was a day of ups and downs - fortunately ending on quite an up.
In this mornings note I said that he has fought himself free of the breathing tube (this picture was taken this morning). Shortly after I wrote that I went back in only to find it in again. He was apparantly struggling too much with his breathing.
Subsequently we learnt that he was not really processing his food. Using the aspiration tube they discovered that after 2 feeds (of 5 ml each) he had 10ml unprocessed in his stomach.
This evening while we were there during the doctors round we questioned when they would do further tests. In short they do not want to for at least 2 weeks. We really couldn't get a good reason why. They very much want to see him process the fluid himself. We found this a tad frustrating to be honest. Then to further frustrate, we asked if his urine production was normal, and the doctor said no, it was high because of the problems with his kidneys (what problem with his kidneys?). After persuing this it would appear that his kidney function has been steadily improving since birth and isn't something to be concerned about.
Actually, at this point, Jules and I were feeling a little sad. After the progress of yesterday we began to build great hope of a very speedy recovery.
On a positive note to end the day, when they went to feed him this evening, he only had 2ml of unprocessed milk in his stomach. On top of that Julie got to feed him this evening. The final bit of good news was that his girth had remainded constant throughout the day. No afternoon expansion. I am very hopeful that tomorrow morning we'll have a sub 39 girth.
Please continue to pray for Will and for his speedy recovery. Please also pray for Jules and I that we will remain in good spirits and that we won't let small setbacks dissappoint us.
I've just spent an hour with Will this morning. He pretty much slept the whole time, but it was great to sit and watch him. This morning he is a tad smaller. Down to 39cm. This is consistant with the weird smaller in the morning, bigger in the afternoon theory. Having said that, he did look smaller me today than previously (I think previous morning size was 39.5). He has also managed to win the battle against all breathing assistance. The nose thingy has also been removed (I think largely because he kept pulling it out). They have said that they may put it back if he starts to struggle with his breathing. His feeding continued overnight. He continues to eat well, but is still supplemented by the drip. I asked the doctor when they would take the drip out. He said at this rate it would be in the next few days. That would be great as it would mean it is a lot easier to pick him up etc. As for further tests, nothing as yet. An update on Jules. After having the stitches out she's moving a lot more freely and is down do taking only panadol. I am returning to work today, but will continue to spend my time bouncing back and forward to the hospital. Perhaps not as much time in waiting rooms, so a few less updates to the blog. Thanks so much for your continued thoughts and prayers. Our prayer is now that he starts to process the fluid on his own. This would be the most desirable outcome. We may never have the explanation as to the cause, but I'd be happy to be ignorant if he recovers on his own.