Re-entry

Seems to me that re-entry is not my strong suit. I always used to find that when I returned to HK after time away. And now I am finding it here.

The landing was superb. We checked in for our flight to find that we were seated in Premium Economy and had access to the Lounge before boarding! I was so glad we arrived early so we could make the most of it. We celebrated our journey home with a glass of bubbles - mine being champagne and Shae's sparkling water. We did it with style!

Monday night was brilliant. Family dinner (a very big pizza!), bath time, bed time, wine time....

Tuesday morning was also great - showing off our new little pink girl to our school family. All great.

But Tuesday afternoon's checkup wasn't quite as good as I'd hoped. Don't get me wrong, in general Shae is still exceptionally good, but her x-ray and echo showed a new (small - relatively) collection of fluid in her right chest cavity. And her oxygen saturations had started to drop again. She is already on the highest fluid restrictions and doses of diuretics that they will allow, so basically all we can do is watch her and see how this progresses. As my mum pointed out, it is a real reminder of what a significant procedure Shae has undergone. That she is still healing from that, even though the wounds are already knitting themselves together into beauty spots.

I guess that the most frustrating thing about it is this - there is nothing I can or can't DO to help this situation. And that is where I must continue to lean on Christ and trust.

The good news is that even if a new drain needs to be put in, they can do it here at the WCH.

She's Got a Ticket to Ride

We have had a surprisingly great weekend.

Saturday morning's x-ray was clear and we enjoyed the afternoon at the Melbourne Museum. Quite fascinating and better than being out in the cold 15 degree day.

Yesterday we went to church with Eleanor's family and then Shae was invited to attend her birthday party at Dizzy's Castle - an indoor play centre. It was a fun and exhausting day which took us pleasantly by surprise. And to top it all off, we snuggled up and watched the dancing finale. A fantastic day. But not as good as today.....


We've been given the green light to come home!!!! This time it's for real. Our flight has just been booked and we will be back by dinner time tonight!

I could just scream for joy!!!!!

Can't wait to see all our Adelaide friends and family soon....



Some of my very good, trusted friends (and my chiropractor) have warned me that once I get back and the adrenalin stops is the time that I may "hit the wall" somewhat. I have been contemplating this and trying to prepare myself. But how do you prepare for that???? Can't really.

So, I am running headlong and joyfully toward my nervous breakdown. As prepared as is possible, and extremely excited that while I may be a basket case, at least it will be with Matt, all my kids, my own bed and my coffee machine!

I have run out of face cleansing wipes.

Normally I am a plain old sorbolene and water girl (low maintenance in all it's finest), but for this trip I thought I would keep things simple and buy some Nivea facial cleansing wipes. Not knowing when I would have ready access to face washers etc. There were 25 wipes in the pack, which I thought would be plenty. Two nights ago I used the last one, which means we have now had 26 nights away from home.

And I am back to sorbolene and water, because hopefully now we will be spending our last nights here in the same place.

Shae enjoyed a long warm shower last night. Her second one in over three weeks (adding it all up, she still hasn't used her 4 minutes per shower quota of water - just in case you were wondering exactly how long this shower was...!).

We have taken this morning slowly, after a wonderful and undisturbed sleep.

It will be a cold, rainy and blustery weekend here in Melbourne. Perfect for playing board games, reading books, resting, maybe even getting on with some sight words.

I feel so tired. And so peaceful.

Take 2

Shae's fluid drainage has been zero for about 36 hours now. She had a chest x-ray this morning and the drain was removed a few hours ago! Subsequent x-ray looked good so we're going back to accommodation now and in for another x-ray and review on Saturday.

Rejoice!

We'll try to get it right this time.....

Dancing Distraction

So You Think You Can Dance seems to have been a theme for this part of our lives and last night the theme continued.

Some of the dancers from judge Jason Coleman's Ministry of Dance school came to Ronald McDonald House to perform and I was given permission to whisk Shae out of hospital for an hour to go and watch. Unbeknown to us, Jason Coleman also came along and met with kids and families using the house. Though I am not usually one to get particularly excited about "celebrities", it was a really fun distraction and gave us a thrill. Shae was probably most excited about the tattoos the dancers gave out after the performance and discussing "hip hop" with one of the female dancers.

Eleanor

Yesterday afternoon Shae's newfound friend, Eleanor, came to visit her. Shae and Eleanor met in a playground near the hospital 2 days before her surgery and since then they have had a lovely time getting to know each other.

Eleanor and her family live nearby, and the night before we thought we were heading back to Adelaide we went to Eleanor's house for a play and dinner. It was lovely. And very normal feeling. And the roasted pumpkin risotto with a glass of white wine were obviously just what I needed in preparation for the weekend we just went through!

They are a blessing to us in a city where we don't have family or friends. And ironically, we have been a blessing to them too as they just moved here from London three months ago. And Eleanor's Grandma lives near us in Adelaide, so we will be able to see them again when they visit in the future!




Though it looked like Shae's fluid drainage was decreasing, the lower fluid levels were due to a kink in her drain causing it to block. Fortunately it is now "unkinked", but the fluid keeps draining out.

We are pressing on, but it is difficult now that the finish line seems to have disappeared. Neither of us are sleeping very well. Today we were able to speak with Shae's care manager and rearrange her overnight care schedule which may hopefully mean fewer disturbances through the night. Strangely, the best place for her to heal is home, but the safest place for her to be is here. Wish there was a middle ground.



PS Wanted to add another point of praise - two of the patients who have been in hospital for a LONG time now have been given the green light to go into accommodation before heading home. I rejoice for them!!

Fluid Update

I met Shae in recovery not long after she went under her anaesthetic. They had inserted a "pigtail drain" in her right side and when I got there the fluid was quite literally gushing out. After about 30 minutes the reservoir had collected 800mls!

All I keep thinking is "Thank goodness we didn't get on the plane with all that inside her!". Imagine what the pressures in the aircraft could have done with that!

Shae is looking much better today. What I thought was just lethargy because of an oncoming cold and post-surgery recovery, was actually half her right lung squashed because of fluid buildup. Her oxygen saturations had dropped into the low 80's, but are now back up in the mid 90's.

Exquisite flowers arrived from Mia and Grandad this morning and now her room smells like a garden! It's not home, but it's safe and we are thankful.

I also managed to arrange a bigger room at Ronald McDonald House for the next time I can take Shae out into accommodation. It overlooks the park.

I keep mulling over Psalm 103 and thank God for all His concessions. God is good. All the time.

And all of a sudden...

Today! We're going home today!!!

We came in to 7west this morning to pick up our flight details and get the all clear to fly back to Adelaide. Drain sites looked good. Went to have a standard echo.

Next thing I knew I was taking Shae down for a chest x-ray, the surgeons were consulted, she was readmitted and I have just left her in theatre to have a new chest drain insterted. There was an effusion (build up of fluid) on her right side.

So, we are back in hospital for a while yet. Shae has been distraught since the news that we weren't going home. She is angry and extremely disappointed. And why wouldn't she be?

I am disappointed too.


PS But praise the Lord that we didn't go back on Wednesday and end up having an emergency transfer back! I can still find the silver linings.

Who Moved the Finish Line?

Just had a checkup with the doctors on 7west. Drain sites are looking a bit better, but not good enough for them to give us the all clear to fly back. So we'll try again on Friday.

Back to Ronald McDonald House.

Just have to say how amazing the Ronald McDonald House is. We are comfortable there and the facilities include a big fully equipped kitchen, lots of bathrooms, unlimited clean linen, tea & coffee and all in a lovely location just next to a park. There are also various companies and clubs who come in and provide families with dinners on occasion. The next dinner will be on Thursday night provided by AXA. I was hoping to miss that one.... but anyway! We have been so well taken care of and I am extremely grateful.

The first night that Asha and Ethan were visiting Shae informed them that they would be eating dinner at McDonalds. She had deduced that if they were staying at Ronald McDonald's house then, of course, that is where they would be eating! Since that was the easiest option that night (there is a McDonalds within the hospital building - go figure!) and Shae had already declared it to be so, it is what we did. Asha has now declared that cheeseburgers are her favourite food. Oh dear.

Easter

It has been quite some Easter for our little family!

As Matt posted, he and the kids came over on Thursday to surprise Shae with a visit. I'm not sure what we expected, but when Asha and Ethan walked into Shae's hospital room she just looked up and said "Hi" as if it was perfectly normal that her sister and brother would be there. Classic!

The weekend was busy in the hospital. On Good Friday they have their annual fundraising appeal which is televised on Channel 7. There were celebrities from Channel 7 TV shows and footballers visiting patients throughout the hospital. The only visitors Shae was interested in (or who we really recognised) were Mr. Happy, Ronald McDonald and the Cadbury Easter Bunny!

When the Drs did their rounds on Friday the fluid output in Shae's drains had decreased a lot. She had three drains coming from her chest - one collecting fluid in a single reservoir and the other two channelled into a shared reservoir. They asked for the two to be seperated into individual reservoirs so they could be sure where the fluid was coming from.

On Saturday two of the drains had stopped collecting fluid and they decided to take them out. Yay! The third one was to stay for another 24-48 hours. Even though they gave Shae medication to help with the discomfort and to relax her, it was still very stressful for her having the drains removed. I did all I could to distract and calm her (reading "Amber the Orange Fairy", singing, holding her hands...). She yelled a lot (nothing wrong with her lungs!). And finally it was over. Wish they'd offered me some of that special medication!

Saturday afternoon I had a lovely time with Ethan and Asha at Southbank, on the trams, visiting Victoria Market, Federation Square etc. It was a breath of fresh air and nice for all of us to be away from the hospital environment for a while.

On Sunday morning the kids on the ward awoke to bunny footprints stuck to the floor throughout the ward and presents and chocolate left by their beds. Shae took great delight at the footprints left in the toilet (obviously a rest stop was required!). It was sweet. After the ward rounds (at which the go ahead was given for drain #3 to be removed) our family headed down to the hospital chapel for the Easter service. We only managed to catch the last 5 mins (!!), but that was probably as long as Ethan could sit still and quietly for anyway. We managed to sing "Christ the Lord is Risen Today", and it was nice to have that focus back in the day. Then we headed out to the hospital garden for our family easter egg hunt. It was such a delight to have all the kids together - they thoroughly enjoyed it. All of us have eaten more than enough chocolate to last until next year!

Drain 3 was removed before Matt and kids departed for home. Rejoice!

Yesterday I was allowed to take Shae over to my accommodation to stay with me until our next checkup (which will be tomorrow). She is doing remarkably well, and I am managing to juggle the fluid monitoring and dosing all the medications. When I went to the hospital pharmacy to collect them yesterday I felt a bit teary seeing all the bottles. Overwhelming. She is on an antibiotic 4x/day, anti-hypertensive 3x/day, diuretic 2x/day, another diuretic once/day and anticoagulation medication once/day! I have her medication and drinks lists written up on pretty posters with butterflies on them. I haven't mucked it up yet....

So much more to write and gaps to fill in. More soon.

Finish line in sight!!

Dear friends, Denby hasn't had access to a computer over the Easter long weekend so I am standing in for a brief update.

Asha, Ethan and I have just returned from a visit to Melbourne. It was wonderful to be together as a family again.

I am thrilled to report that Shae's final chest drain was removed yesterday. Today, post surgery day eleven, she will be discharged from hospital and join Denby in nearby accommodation.

Shae has a mild infection at the drain wound site, for which she is being treated with antibiotics. Apart from this, she seems to be in perfect health.

I will write more later but would like to thank each of you for your support and especially for your prayers. We have been humbled (astonished really) at the mercy and grace which God has poured out on our family on this leg of our journey. It has been a remarkable testament to the effectiveness of prayer.

In the hospital ward this trip I met the families of 3 other children who have undergone the same surgery as Shae. One was discharged from hospital a couple of days ago after a 3 month stay. To date the other two kids have been in hospital for six and eight weeks respectively.

I'm lost for words.

With much love and thanks,
Matt

To grump or not to grump

We had a midnight room change.

This unsettled Shae and meant that neither of us had a particularly good sleep. She was definitely a grump when she woke up this morning.

The day, however, seems to be improving as we go. Fluid output has been the same for the past 3 days now (which is somewhat discouraging for me), but one of the drains has no output so that one may come out tomorrow. We walked off the ward and down to the Starlight Room where Shae beautifully coloured in an easter egg picture which was shown on the hospital television station.

The room Shae is now in has children who are more her age. And the nurses seem even better equipped to cheer up, care for and entertain the kids, which is fantastic. When I left her this morning to have a shower and breakfast she was cross at me for leaving. By the time I returned she was smiling and happy. Hooray!

She is feeling pretty good within herself generally, though there are certainly moments when she's just had enough. She has no qualms about letting the nursing staff know how she feels about being prodded and poked and fed yucky medicine. It is at those moments I find myself in a mummy dilemma - do I push for best manners at all times or do I just let her get it out of her system (afterall, I can understand why she is feeling like she is!!). I'm trying to strike an appropriate balance. I think that after Shae has had a chance to wake up each morning, realise where she is and deal with that concept, she is also getting better at accepting it and getting on with it.

Walking the Ward

Shae has been walking quite a bit the past 2 days. When I say "quite a bit", I mean walking from her room along a corridor to the playroom, to the bathroom etc. Yesterday and today have seen us move away from the blue spectrum and much closer to yellow.

Last night at about 8:30pm, after having made a playroom run and 3 toilet trips during the day, Shae asked if she could once more get out of bed - so that she could walk across the room and look at baby Ellie who is her "across the room" neighbour.

Let me put into perspective what a big deal it is for Shae to take these little trips. In order to walk it takes two adult to help carry all the "accoutrements" - her fluid receptacles, drainage tubes and IV pole. Before even getting out of bed we need to unplug her heart rate, respiration and oxygen saturation monitors, clamp the drainage tubes and disconnect from the suction. And when she gets back into bed we have to untangle all the bits and hook it all back up again! It is a production - believe me - so for her to want to do this just to see a little baby across the room really moved me (exhausted me a bit as well!).

Today our friends Steph and Dale and their boys came to visit us. It was a real highlight and Shae definitely rose to the occassion! She walked down to the playroom with them (going at record pace), played with the doll house, posed for the cameras. I praise God that both times we have been here for Shae's surgery He has arranged a visit from someone in our Hong Kong family. Medicine for our souls!

Fluid drainage is constant and steady. Please pray that it starts to decrease soon!!!!

The Blues in Pink

Today Shae has a slight case of the blues. This is typical.

Her fluid drainage is steady. She has had her central line and pacing wires removed. Very good.

We will attempt to go for a walk with Shae and the physio down the passage of 7 west. After that it will be time for Matt to head to the airport.

And all of a sudden, just typing this I feel a bit homesick and sad. Don't get me wrong, I feel well supported and energised and equipped through prayers and a couple of good nights sleep (Matt has spent the last two nights by Shae's bed so that I can be rested before he heads off. Thank you my man, you are amazing!).

Perhaps I will allow myself to have a little of the "Day 3 Blues" as well. I miss my Asha-bug and my little man Ethan. And I don't really know when I will see them again. They have had a wonderful week with Mia and Grandad. They are safe and loved and being ever so well cared for. This gives me great peace. But when I hear their little voices each night, I know they are starting to miss us too. It will be good for them to have their Daddy back.

Thank goodness it's Sunday! Tonight Shae and I can cosy up on her bed and watch the dancing and have a bit of chocolate. That ought to ease the blues a bit.....

Day 2

I forgot yesterday was Saturday. The days all blend into one here. So when I came down to post in the Family Resource Centre it had just closed for the day!

Shae had a good day and was actively involved in her physio session which involved standing and walking on the spot beside her bed, coughing, blowing bubbles and sitting up (our favourite part, because we each had a turn at cuddling her on our laps!). The physio sessions are important as her lungs have partially collapsed which limits the amount of oxygen uptake in her blood. This is quite common after a Fontan operation and will improve as she exercises her lungs more and more.

Her fluid drainage from her chest has picked up since she has started moving - this is good because it is better out than in. Fluid drainage is also the thing that will determine when she can be discharged from hospital. Once the fluid stops draining we are one step closer to coming home. There is no way of knowing how long the fluid will drain for. In some children it may be 5 days, in others it can be anywhere up to 6 weeks. So, how long is a piece of string?

While her progress is good, it is hard work for Shae. She continues to be cooperative which is fantastic, but with lower medication doses she is much more conscious now of what is happening than she was on day 1.

Shae loved being able to talk to Asha and Ethan on the phone tonight, and also to her friends Annie and Chloe in India.

We are nearing the end of day one. Shae had her first physio session and not only sat up, but also stood at the side of her bed! They normally don't even attempt standing up on day one.

She's a strong little one....

7 West

What a night!

More things to give our great God great praise for....

We left Shae at about 8:30pm to head back and get some sleep (phones on should she wake and need us). We phoned the ICU at about midnight to find out how she was going and learned that she had been extubated at about 10pm and breathing strongly on her own.

The nurse said she was comfortable and not distressed so we caught another few hours of sleep.

I woke again at 4am and wanted to get back to Shae's side, so I started getting organised to go. Matt (my knight in shining armor!) didn't want me walking to the hospital on my own in the dark, so he got up too and we were back at Shae's side by 5am.

By 11:30am she was being transferred out of ICU and back up to the cardiac ward, 7 West. She is in the original room she was transferred to when she was born and has a berth by the window.

Back in her very first bedroom!

And once again in record time.

She is now down to 3 drug infusions, 3 chest drains, pace wires and a couple of IV lines. She is still drifting in and out of sleep. Her biggest discomfort is her thirst. She can only have about 15ml of fluid per hour at this stage and that is tough to explain to a thirsty little girl.

I have managed to get a room at Ronald McDonald House for the remainder of my stay (and there is also a foldout bed by Shae), which is fantastic! We will move all our bags from current accommodation just as soon as the rain and thunderstorms outside subside!

Best in over a year....

We have been sitting with Shae for most of the afternoon. She is still asleep and will slowly wake up over the next hour or two, but they need her to start breathing on her own a little stronger before they allow her to gain consciousness.

She looks beautiful. Even with all the tubes and drains and drips (I counted and photographed 8 different drug infusions, a saline drip, a blood infusion, 3 chest drains, some pace wires, the ventilator in one nostril, an internal thermometer line in the other and a urine catheter). Her lips and fingernails and feet are pink!

We just saw the surgeon and the anaesthetist who were both thrilled with how well the procedure went. The anaesthetist said it was the best and most straight forward procedure with the best team he's had in over a year!!! I took great delight in telling him that there were hundreds of people praying for them and for Shae all over the world.

The power of prayer.

Thank you.

Day Zero

This is a very quick post before I run up to the ICU to see Shae post-surgery!

We were expecting a phone call at about 2 - 3pm, but the surgeon called at 12:30pm to say that he had finished, all had gone very well and Shae would be in ICU in about an hour. That's in about 10 minutes, so I'm racing!!

Praise the Lord that all went so well and so quickly! Typical of Him and Shae, really. Like I said, they have a pretty brilliant track record.

I will post in more detail later tonight, but I'm keen to get up and see my baby. I expect to see a beautiful angel hidden beneath a swollen and blue face with lots of tubes, ventilator, fresh incision...etc. Desperate to be by her side!

Let everything that is in me praise the Lord. PRAISE THE LORD!!!!

Go

I have just left Shae after watching her go under anaesthetic. She was a bit teary last night before bed and quite teary before going under. But she skipped to the hospital - that image is burned in my brain. A number of times she said to me "I don't want to do this". I know, and if there was any way I could do it for her.....

We anticipate a 6 hour wait (approximately). I know she is in the very best hands who are being guided by the Master Surgeon Himself - but still my heart is aching.

It's harder this time.

Will endeavour to post tonight with an update...