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Wiggles!

We had a wonderful family day today. William was given three tickets to the Wiggles Show by Adrienne (the manager) at Ronald McDonald House. We managed to get approval for a gate pass from the cardiac team and the rehab team and he had his antibiotics early before his line was locked off and disconnected from the IV pump and drip.

Wil was very excited just to go in a new wheelchair without all the extra bits attached!

We all piled into the car – the first time in over two months as a family – and we drove into Star City at Darling Harbour. The tickets needed to be exchanged for seats with wheelchair access and so Liza and the kids came with us to the box office at the Lyric Theatre. They were very helpful and even though it was sold out, we managed to buy two extra tickets for the show so we could all go! Even a month ago we could have never imagined doing this as a family so soon! It was wonderful!


William was a little frightened of the possibility of talking to the Wiggles up close. Even sitting in the theatre he was getting cold feet. But as soon as the lights went down and the action started he was hooked! He sang along, he did the actions and he yelled 'Wake up Jeff!” possibly louder than anyone else! At one stage in the show, Sam came up the side of the stalls and our shy little William put his hands over his face. But as he got closer Sam got a big smile and Wil happily gave him a high five!

After the Wiggles we went to the Sydney Aquarium and went for a quick walk around the fish and sharks. He had a lovely time there as well and enjoyed looking for any fish he knew from 'Finding Nemo'.  By the end of the day he was tired but very happy. The same went for his parents.

Steps to recovery

Today was another milestone day – William walked today!. Yesterday we was supporting his own weight in the physio gym. Today he was in the playroom on the Edgar Stephen Ward during the fortnightly HeartKids morning tea. He decided he wanted to get out of his chair so he could play. He later spotted a play kitchen and found it difficult to crawl so with mummy supporting him, he took a few steps. He repeated his efforts in the physio department in the afternoon covering several metres with just some support under his arms. He stood playing holding onto a small bench and was on many occasions standing without any of us touching him. It is amazing to see this change from the little boy who even a week ago could not sit up by himself.

Whilst his rehabilitation is intensive and he sees the play therapist and the physiotherapist daily, the occupational therapist and the speech therapist several times a week, he only has access to the music therapist once a week. Last week he was asleep during the half hour window of time she had available. This week he was chomping at the bit. He loved singing along and banging on the drums. Liza even suggested he might become a drummer but I replied that I thought he would make a better recovery than that! (apologies to our drummer friends)

Drains out

Today was one of those great days. William had his chest drains removed this morning!

The drains are very uncomfortable and are the reason William is still on morphine. They restrict him moving in just about every way and they add a huge load to transferring him to a chair. They would need to be secured carefully on each side of his wheelchair and the tubes carefully coiled out of harm's way. They needed to be attached the his bedside and every time we moved him we would have to ensure the drain was not pulling. They were tapped and banged to keep fibrin clots moving along day and night and were constantly being checked. To have the chest drains out is such freedom for Wil. He sat up unsupported this morning after his drains were out for the first time since his operation!

Liza, Tom and Liv went to Toronga Park Zoo today. Wil and I got out and about around the hospital and grounds with just one trip to x-ray and the rest of the time spent looking for pictures of elephants or playing on the pirate ship in the playground.

The prolonged recovery here in hospital is taking its toll on Liza and I. We are more weary than we would like to be and are burning the candle at both ends a bit. Returning home with William will be such sweet joy for our whole family. It is days like today when we feel that it is definitely getting closer.

William has gradually been improving over the week. Today he had quite a good day. He was trying to hurry his dad up and go for a walk outside - apparently dad was taking to long to get ready getting him into his chair!

He has had his oxygen removed and no longer needs continuous monitoring. This means there are two less things attaching him to the wall and it is just that little bit easier to move him now. His vision still appears to fluctuate a bit. His conversational ability is improving a lot. He is relishing the amount of Wiggles toys and music he has been allowed recently. Today he unwrapped a present that Pos gave him several weeks ago. He was so excited to get his hands on a wiggles guitar!

William's pleural drains are producing less fluid now and hopefully we will have less than a week of needing them (we are a bit careful to make more accurate predictions). Getting his pleural drains out will mark a big step towards his recovery and his discharge. He will be able to start rehabilitation in earnest and we will be able to get his muscles working a bit to try to reverse his somewhat de-conditioned state.

Wil's siblings and Ya Ya went back to Nowra today. There has been a serious outbreak of gastroenteritis in Ronald McDonald House and all siblings have been asked to leave, no-one is allowed to eat in the kitchen or dining areas and the communal areas are empty.

Adam had returned to work and will spend Wednesday night through to Sunday night in Sydney and will work Monday to Wednesday and Friday in Nowra. Liza will continue to hold the fort here and will be on duty by his bedside most of the time. Whilst we are stretching things as far as we possibly can, it would be good to be three people instead of one at times. Everything we are doing is worthwhile though - Wil needs us and it is good that we can share the load. Our other kids also need us and although our family life is dramatically different to what we might consider 'normal', it is still gratifying that we can claim to still have a family life. Work is busy but my patients and colleagues and staff are immensely understanding and supportive, and just to ensure that there are no stress free moments, we are renovating at home and are shortly to start at work as well.

I was discussing building with our project manager and were discussing the rewards of seeing day to day progress, seeing your goals realised and being able to see that all the work that is done actually results in a visible tangible difference. Whilst we have had our share of bad weather and variations to the schedule with William, it is also rewarding to see him improving, growing towards health and being built up again.

Happy Birthday

Today William turned four. His nurses decorated his room with balloons and happy birthday posters and they organised a party for him on the ward. He had volunteers visit him, one of whom was a ballon scuptor and gave him a a lovely balloon teddy bear.

He opened some presents on the ward, had a nap and then we took him to Ronald McDonald House for a birthday lunch with Pos, Pa, Uncle Dan, Aunty Emma, Uncle Dominic and the Kipps cousins.

Will is no longer seeing tigers that are not there. He now has his own soft friendly tiger that is definitely not a hallucination.

Pos made a very hungry caterpillar cake for William with four candles!

Easter Show

William has had a couple of days lying around just draining fluid from his chest cavity after having his drains re-sited.

Yesterday Liza & Adam took Olivia & Thomas to the Royal Easter Show (with Pa, Uncle Dan, Aunty Emma and the Kipps cousins) Wil stayed behind with Pos who looked after him all day while we were out. He did  bit of sleeping in between dressing changes, medications, suppositories and feeds but generally was a little grumpy when awake. Today he has been a little better by all accounts and was lucky enough to get a little bit of the Easter Show come to him. Several of the RAS Easter Showgirls came into the hospital with toys for the kids. Wil has always had an eye for he pretty ladies and he seemed pretty happy to have them visit. I am sure that he was less impressed that the Miss Canowindra Showgirl was an ambassador for rural NSW (and could probably even bake a decent scone) than the fact that she gave him a Wiggles bag and some other play sheets and cards.

We are hoping to be able to rationalise William's antibiotics soon. The sensitivities of his blood cultures was finally reported today and we were pleased to see that the staph is sensitive to flucloxacillin and is not the dreaded MRSA (resistant to multiple antibiotics). He is currently on timentin, flucloxacillin and vancomycin four times a day and gentamycin daily. This is combined with his oral medications including MS Contin, Keppra, frusemide, lisinopril and pyridoxine twice daily, warfarin and melatonin daily and oxycodone and paracetamol as required. It is a never-ending time job just getting him dosed up!

More theatre time

William has been out of sorts. He had high fevers last night and this morning both drains were blocked. His chest x-ray showed fluid was compressing both lungs and his oxygen requirements were rising.
The recent blood cultures grew staphylococcus aureus in both samples, one of which is coagulase negative. This means he will be on antibiotics for quite some time and so it was arranged for a long line to be put in while he is in theatre. This is a bit like a central line into his arm which can stay in for a while.

He was fasted overnight and eventually went to theatre at about 5:30pm. At about 7:30pm the cardiothoracic fellow wandered into the ward to tell me he was in recovery.
Will never wakes up happy from anaesthetics but he was not too bad all things considered. We got him back to the ward and the new line kept occluding - probably some kinking of the line which a new dressing may fix but we nursed it through and will address that tomorrow when he wakes.
The new drains have been working well and before he even left recovery he had drained over 200ml from his left side. His right side is draining less as it unblocked itself just before theatre.
Whilst it is not great that Wil had to go to theatre today and it is not great news that he will be on intravenous antibiotics for a complicated infection, he is being treated appropriately and we are all set for further improvement.

Easter Monday

William's left pleural drain is blocked again. There has been little drainage for two days and long periods when nothing comes out. An x-ray done yesterday showed increased fluid building up on the left side again pressing in on his lung again. Greg Rice, the cardiothoracic registrar came in this morning and tried aspirating the fibrin plug out of the drain but it would not budge. Added to this is the fact that the swabs from the left drain site grew bugs called pseudomonas and staphylococcus, and the recent blood cultures also grew staphylococcus.

It all adds up to needing a new chest drain. So tomorrow William goes back to the operating theatre tomorrow.

Easter Sunday

Easter Saturday

William remains somewhat grumpy when his temperature is up but he has his moments when things are looking good. His bowels have still not opened but judging from the amount of aperients we have put in both ends and the sounds gurgling around his tummy, someone might find a lot of something on Easter Sunday that resembles chocolate in colour only.

William's head control has improved significantly and he is now able to sit in the weighing chair by himself. Today  we took the plunge and sat him in a pram, unhooked the suction to his chest drains and hung the collection containers on the back, unplugged his IV pump and got a more user friendly pole, hooked up portable oxygen and right at the end we decided we should pop a sheet over William - It was warm but the bare chested look was not quite what the public needed. We pushed him out of the ward and down to the playground, He had one slow circuit on the roundabout and then we pushed on to Ronald McDonald House where we spent some time looking at the play equipment he had thoroughly tested in the evening when we arrived there four weeks ago. he couldn't get out of his pram but he did enjoy looking at everything. He will love these things so much more once he is not hampered by drips, drains, constipation and fevers and hopefully that time is not too far away!

Good Friday

William had been making slow progress with gradually improving sleep, less hallucinations and confusion and improving sight. Both arms and hands are moving with reasonable strength but his co-ordination and ability to manipulate things is still significantly impaired. The muscle tone in his neck seems to be improved slowly as well. His diazepam has been weaned dramatically, his pain relief is still required but is causing constipation, his drain dressings are causing blisters on his skin but with some dressing changes hopefully that is now under control.

Rehab will commence next week in a bit more earnest but his newest problem seems to be infection again. William has been having fevers for the past 36 hours and his blood count showed a high white cell count and an elevated C-Reactive Protein (which together would suggest something is going on). Swabs from the drains did grow some bugs but it is quite possible  that they are not the source of his main infection.
He had a cannula put back in today (amazingly the anaesthetic registrar found a vein to use!) and he is on intravenous antibiotics again.

Although grumpy and very sad, we are slowly seeing more of our little William as he recovers. He has moments of happiness where his little sense of humour shines through again. Although constipated, he has been passing quite a bit of wind and after one fairly obvious passage of flatus, I turned to him in mock surprise and said "William! What was that?!"
"A frog" he replied, grinning back at me. (Officially, I have no idea where he learnt that, but I will confess to possibly encouraging him by laughing a lot)

Liza drove back home on Wednesday to see Olivia get an award at her school assembly and to see both kids in the school's Easter Hat Parade before bringing them back up to Sydney. It is lovely to be back together as a family again at Easter. It will be hard in the coming weeks as we spend more time with our family separated at times but we do look forward to William's progress and to see how much he will recover as well.