The Life and Times of William Hodgkins

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2010-04-30T15:50:00.001+10:00

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Wiggles!

2010-04-24T22:28:00.000+10:00

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

2010-04-22T22:57:00.001+10:00

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

2010-04-17T23:10:00.000+10:00

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.

2010-04-15T21:23:00.001+10:00

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

2010-04-10T21:32:00.000+10:00

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

2010-04-08T21:49:00.000+10:00

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

2010-04-06T23:18:00.001+10:00

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

2010-04-05T17:49:00.000+10:00

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

2010-04-04T17:12:00.003+10:00

Easter Saturday

2010-04-03T22:53:00.001+11:00

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

2010-04-02T23:06:00.000+11:00

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.

Bad night, good day

2010-03-29T22:33:00.000+11:00

William had a bad night, waking at about 1:00am and then not getting back to sleep until 7:30am this morning. During the wee hours he was extremely agitated and for most of the night he appeared delirious. Finally after his third dose of Chloryl Hydrate in a 12 hour period he fell asleep and caught up on five hours sleep. His afternoon was pretty good. He woke up cranky but after pain relief he get much better and was very cheerful this afternoon. We played and he laughed and smiled.
His vision continues to improve... OK, so he did think my hand was a spider at first but when he was given a second go he knew he was seeing Daddy's hand. He was carefully looking at his own left hand today also and remarked as he opened and closed it " 's my fingers!" He has come a long way already from when he could not move that hand at all and could not see it or anything else. He can now clearly make out not only shapes but can even recognise people from their faces at times.

We had visits from a range of medical teams today - The cardiology entourage of over a dozen people stop by every morning on the ward. we were also visited by the rehab team, the pain team, the dietician, the physiotherapist, the social worker, the cardiothoracic registrar, and the neurologist. He had bloods taken (with difficulty) and had all his dressings changed. He sat out of bed for half an hour again as well. Best of all he went to sleep at about 7:30pm - we know how much he needs his sleep at the moment.

Tonight for the first time in three weeks, we pulled out his pyjamas. There are still too many things attached to his upper body but since his chest drains are no longer secured to tapes attached to his nappy, we decided that it was time for his Wiggles pyjama bottoms to make a reappearance. He was pretty happy!

Day 21

2010-03-28T21:26:00.000+11:00

William had a good day today.

He enjoyed brief visits from his siblings, who have been fantastic. They go out to the balcony off Wil's room and do colouring and drawings for him. They will spend time talking to him but really understand when we ask them to leave him alone for a while. They completely understand that William's brain was hurt and he is not like his usual self and have taken it all in their stride. William also enjoyed sitting quietly with Ya Ya again today.

He had his IV line removed today - it was only being kept in case it was needed and given that it had probably blocked and was unlikely to be required, it was removed, giving his left hand back. Both hands are now moving well although the left side is still a bit weak and it seems difficult for him to co-ordinate his upper limbs. His head and trunk are floppy but he still has some tone and movement - this will improve with rehab. He sat out of bed a couple of times today - for weighs, linen changes and for about 40 minutes to help his chest continue to recover. He loved his time sitting on mummy's lap today.

His vision has started to improve. He is definitely fixing and following faces now and he may even be able to recognise people by looking at them. He obviously still has trouble seeing but he is definitely getting better and although it doesn't feel it sometimes, it is still early days yet!

We had plenty of smiles today and even more than a few little laughs. It is amazing what strength we get from each smile.

Settling

2010-03-27T20:21:00.022+11:00

William did have a bit of an unsettled day today. Given that when he woke this morning he was already tired - he had had less than six hours sleep in the preceding 24 hours. We let him sleep as much as possible this morning and tried to keep his stimulation to a minimum. He was reviewed by the pain registrar who increased his MS Contin.

Although he coped fairly well in the morning, he became agitated in the afternoon and was thrashing around a bit. He eventually settled with more pain relief and some sedation and apart from waking in pain at about 10:30pm and then again with agitation and hallucinations at 1:15am, Wil managed to sleep.

We did notice that William responded very well to Liv and Tom being there. He became irritable if he was stimulated too much but he loved hearing them and seeing them over the weekend.
Adam & Liza actually got to both leave the hospital for a short break today while Pos & Ya Ya looked after William and Uncle Dan, Aunty Sarah, Uncle Matt and the Jeffery cousins all played with our other kids.

De-intensified

2010-03-26T15:28:00.004+11:00

Today was an intensive day of de-intensification:
Wil's arterial line was removed after coaxing one last blood test from it.
His venous line was capped - it was left in place just in case he needs access in the next day or two.
We spoke with the rehab team several times.
We spoke with the pain service doctors.
The Fentanyl infusion was ceased and he was started on MS Contin through his PEG Tube.
We spoke with Prof Ouvrier about the MRI scan.
And we moved out of the intensive care unit!

William's rehabilitation will start slowly next week. The rehab team indicated that he will stay in hospital while he is making good progress and he will be discharged when the gains start to slow down. The actual time will really depend on how he goes but will be in the order of 4-6 weeks more. This time frame gave us a bit of a shock as it meant we will have to confront the reality of a prolonged hospital stay, balancing work, family and hospital commitments. It also reminds us that there is still a long journey ahead of us.

Given that we were changing from one medication to another medication, there was always a chance that the new medication would either make him too drowsy or not give him sufficient pain relief. Unfortunately it was the latter and William was awake until 1:30am. The change of environment and several visitors today (siblings, grandparents, aunt & uncle & cousins) may also have unsettled him a little. It was a rough night as now we are on the ward one of us will stay the night next to his bed to help settle him. We are trying very hard not to overstimulate him - he really needs heaps of rest. It has been more of a problem recently and we are trying to work out the right balance.

It was lovely to see so many of the family though and Wil was definitely enjoying the visit. He was smiling and babbling away, his echolalia was certainly making our kids laugh and when they giggled, he would smile with them, very likely feeling that he was part of the joke.

Among the large number of doctors we saw today was Prof Ouvrier. He told us that the MRI results did not reveal anything new. There was nothing that could not be seen on the CT scan. He felt very encouraged by William's progress so far. His movement in his left arm has improved substantially. He still has some weakness but is moving this hand, wrist and elbow which were showing at the most a flicker of movement only two and a half weeks ago. He appears to be regaining his vision and today he was definitely fixing and following at times. This is of course a huge relief. Prof reassured us that he felt very optimistic for William to improve substantially from his present state. It is always a relief to hear such news.

So while everything that happened today culminated in a very irritable and restless evening and night. we feel we are moving in the right direction. Getting out of intensive care was a great step forward despite the wonderful care we received from all the staff there.

Less tubes

2010-03-25T23:58:00.000+11:00

William continues to improve and today he was de-intensified just a little. He had his urinary catheter and one of his venous lines removed. He is still draining a fair bit from his chest drains but his intravenous analgesia will be weaned and he will go onto oral analgesia. He is being weaned from his diazepam as well. His oxygen was almost weaned off but tonight when changing rooms, he desaturated a bit and returned to two litres per minute. Hopefully he will be back to ½ a litre per minute by the morning.
If there is a bed available, we might even make it to the ward tomorrow. The hospital and intensive care seems extremely busy at present so I am not holding my breath but it would be a lovely step in the right direction.
We did not get to see the neurology team today to discuss yesterday's MRI. It was a bit disappointing as we waited around the entire day ensuring one of us was always at the bedside and the other was close enough to be back in under two minutes.
William can have some fairly calm periods but still seems to be having hallucinations at times and at other times is just confused and agitated.
His ability to see seems to fluctuate. This morning he seemed to be able to see my fingers if I wriggled them in front of him but later he showed no signs of being able to see at all. I guess it is still the early stages of his recovery.

Magnetic Resonance Imaging & Magnetic Resonance Angiography

2010-03-25T00:12:00.000+11:00

William dozed most of the day, still intubated and sedated. He did get agitated when he had some secretions in his tube but settled well after suctioning. His new chest drain continued to drain well and his chest x-ray this morning, (according to the ICU fellow during morning rounds) was the best it has looked since he has been here.

The MRI and MRA were booked for 1pm. At 1:30pm were were told it was going to be at 3:00pm. At 4:00pm we were told we were just about ready and at 4:30pm we finally left the unit with the anaesthetist.

William did not misbehave with the anaesthetist (apart from opening his bowels for the first time in five days) and before long he was being wheeled back to PICU.

He was settled and reconnected to the machines back at his bedside and then Emma, his nurse, began the appropriate preparations before extubating him and once more he was with out a ventilator and just on nasal prong oxygen. He settled very well and coped with physio without too much problem tonight before falling asleep at 9pm without needing extra sedation.

Before and after

2010-03-23T23:00:00.001+11:00

William spent all night off CPAP. He coped well and despite being confused and agitated at times he seemed to be having a reasonable day. As you can see he had a smile and giggle again today.

But his drain was blocked again and his left pleural effusion was getting bigger and compromising his left lung. He needed a new drain. We could not get blood from him this morning. One of the fellows who seems to have amazing success found a vein out of nowhere and managed to get one tube off for his INR but there were still several tests that could not be collected after a significant amount of distress.

The doctors had been talking and planning and today they decided to take William back to the operating theatre to remove one of his chest drains and replace it. Whilst he was under anaesthetic they would put in a second venous cannula and an arterial line so that we can collect blood easily. The plan was to bring him back intubated and leave him on the ventilator until the MRI scan. The earliest we could get that is tomorrow so Wil is now sedated and ventilated. The up side is that he can get some rest (although at first the sedation at reasonable levels was still not enough to keep him under and he would wake up very distressed - that was fixed as quickly as they could). The major benefit is he will not need a second intubation and anaesthetic for tomorrow's MRI.

We had an hour to fill while we waited for his to return to the PICU. We mooched around a bit, read and waited - certainly with a lot less stress than last time but it is always good to be told that "You can go in now and see him".

His new chest drain was higher up in the side of his chest - mid axillary line. He had his new arterial line and new venous line - both hands were now back on arm boards.

His postoperative chest x-ray showed the new chest drain in a less than desirable position and the cardiothoracic fellow came in and manipulated it on the unit before securing it again and suctioning out a few fibrin clots that had already formed. His endotracheal tube also required repositioning and re-securing. After that his nurse gave him a good clean and fresh sheets (the others were wet and blood stained from attaching the drains) It is wonderful to see how the excellent nurses here cope with the intensive stuff of adjusting ventilation, clearing secretions which are blocking his bronchi by suctioning him, adjusting his sedation and analgesic infusions as necessary but they also look at the real issues of keeping him comfortable and clean which might seem inconsequential with so many other things going on, but which illustrate the level of care and dedication they have for their patient.

His blood tests were easily collected from the arterial line and he remained well sedated throughout his physio session. Whilst the visual images look like a step backwards, we know that these things will help William to improve to the point of leaving PICU that little bit quicker.

Wondering about paradoxical reactions?

2010-03-22T23:25:00.000+11:00

The MRI scheduled for today was cancelled. Even though William is doing much better, because he was still having CPAP, there was a real risk that once intubated for the MRI, he may have problems coming off ventilation again. That would be a step backwards and the MRI will not change his treatment in the short term. At this stage it has been postponed until Thursday.

The chest drains are still in. The left one blocked again and was again manually unblocked. It only drained for another few hours before blocking off again. They have been in for long enough that the suture holding the left pleural drain in place pulled through his skin today. He had it resutured (with a little bit of fuss and objection from William - apparently he doesn't like local anaesthetic!). He also had his femoral line removed and scored a cannula in his hand.

He spent a long time off CPAP today and this evening he was looking so good respiratory wise that his nurse asked the consultant if he could keep it off while he slept as long as his respiratory effort did not increase.

Again tonight William was extremely agitated from about 7pm until 9:30pm when he finally went to sleep, again after a dose of chloryl hydrate. He had not just had physio (which I guess I was blaming last night). He was also very agitated with lots of disturbing hallucinations from just after 11am today. He could be having a paradoxical reaction to the diazepam which in each of these three cases was given just before he got significantly worse. We will discuss it further tomorrow but it would be heartening if we can find a easily reversible contributing factor.

Daddy's underpants

2010-03-21T23:07:00.001+11:00

William is quite the chatterbox. He talks almost constantly when he is awake. He seems to love being a little parrot and repeating what he hears said in his presence. It is significantly out of character for William and will probably settle down as his cerebral situation improves. He is still having hallucinations, mainly when he is tired and tonight they kept him awake until 9:45pm. He seems a bit more settled at times when he is not to tired. He had a little smile today and I asked him “What is funny William?”
“Your underpants!' he replied with a giggle. It was a joke that was destined to be repeated several times today but we love to see him smile and have not at all been sick of that little quip.

He sat out of bed twice today: Once in my arms as he was weighed and Liza sat with him on her lap for almost 20 minutes in one of his unsettled moments. He did not love sitting up, possibly because he still has two chest drains, a urinary catheter and three IV lines connected to his groin. His head control is not great and that may also give him some discomfort when sitting upright. He is loving cuddles though and he actually asked for one unprompted today. (We have been doing plenty of prompting up until now)

He continues to tolerate reasonably long periods off CPAP (2½ hours today) and we are hopeful that he will not need it for much longer. His liver function abnormalities are improving and his neutrophil count is dropping back towards normal.

Tomorrow he will get his femoral line out if someone can get another cannula in somewhere and he will probably have the MRI. All in all, William has had a much more settled time when compared to a week ago. He still has his hours of agitation but he has been blessed with a few hours of calm as well.

Another day in ICU

2010-03-20T23:26:00.001+11:00

William has had a few hours of significant agitation and hallucinations today. There are small signs to hold onto though. He is grumpy and upset but he can recall information in his better times and he does recognise people.

Olivia, Thomas and Ya Ya arrived last night. He was tired when they arrived but knew they were here. He also was interacting with Aunty Sue and Uncle Marco when they were here today as well. Unfortunately Olivia woke this morning feeling unwell. Because we are staying in Ronald McDonald House, we must be very careful of any risk of passing on infection so 'Liv had to go straight home. We did not even let her have breakfast here but took her straight out the side door to the car. Ya Ya (Liza's mum, Marea) took the kids back home. Poor Olivia & Tom were really upset. Olivia was fine again tonight but we would never take the risk. We are all missing each other and I know that William is certainly missing their love and attention.

Wil had some more fluid drained out of his left pleural space today as his drain was again manually unblocked. The fluid is still coming away and will need to be less before the drains can come out. He has had his midazolam infusion ceased and he has been put of diazepam to replace that for sedation. He can have the diazepam orally (or at least via his gastrostomy) He has also had his captopril increased. His blood pressure did dip for a while today but he recovered with a bit of chest physio (nothing like stimulating Wil's lungs to get his blood pressure up!). It is looking like a long road still but we are looking forward to it leading out of the woods soon.

Wires out

2010-03-19T23:11:00.002+11:00

William has been making slow steps in the right direction.

His chest x-ray looked a lot clearer today and given the left chest drain seemed to yield another 15ml over the course of the day. He was finally fed at 4pm and theatre was cancelled. No new chest drains today!

William also had his pacing wires removed today. The wires which are inserted into the heart muscle during the operation usually do not bleed but sometimes can. If they do not come out early (before the mediastinal drain), then they are left in until they form tracts that any bleeding will follow back to the skin. Even though William is mostly not in sinus rhythm, he is coping well and has not needed pacing for a while. The INR was low enough today to take the wires out and he is now minus three more things protruding from his chest.

He spent an hour and a half off CPAP this afternoon! He was tolerating it very well! There was some early hallucinations but they settled and then we listened to some Wiggles, made some animal noises ("cock a doodle doo!") and even had a few giggles and smiles. He has been referring to anyone who comes to touch him for a clinical reason as a doctor. ("No more doctor" he will insist) Today he learnt a new word - "Physio". His parents' favourite words from Wil are "I love you" and "mmmwah!" which is how he gives us a kiss from behind the CPAP mask.

Whilst Will is still having hallucinations, he has not been quite as bothered by them today as yesterday. He seemed to have a longer time awake with less hallucinations. He certainly seems to be more susceptible when he is tired. This can be a problem because they keep him awake. He would like to go to sleep but cannot with spiders or tigers bothering him. Prof Ouvrier gave these visions a name today - Charles Bonnet syndrome. Hopefully we are close to seeing them settle substantially.

We are feeling very supported here and wish to thank all of you who have sent us things (we certainly loved all the pictures from William's preschool friends and Tom and 'Liv's classmates as well that we received today). Thank you for the messages, the offers to help out and the prayers. We especially appreciate the time you take to read about his progress, to learn of his steps forward and those inevitable setbacks he has had to overcome as well. Thank you for sharing in this stage of William's journey.

Effusions and Delusions

2010-03-18T22:49:00.000+11:00

Wil has had a tough day. He has been very unsettled today with more hallucinations and generalised delirium than yesterday. His chest infection (sputum cultures grew haemophilus) seems to be improving with gradually decreasing white cell counts, no fevers and decreased work of breathing. Then there was this morning's chest x-ray...
His x-ray this morning was terrible. The left side of his chest was very cloudy and there was a huge effusion. The drain on the left had been blocked for some days now but previous x-rays were only showing minimal collections of fluid. He had an ultrasound to estimate how much fluid he had in his lungs. It is hard to be accurate about volumes but there was definitely enough to drain. We were consented to go to theatre for a new drain and were told it would happen at about 8pm. At about 7:30pm the cardiothoracic registrar came in to let us know there would not be theatre time until about midnight and he would try to unblock this drain first. He gave a few very big pulls with a large syringe and managed to pull through a bit of fibrin clot followed by about 100ml of fluid. We were thrilled - maybe this would work! Over the next hour about another 10ml drained and then we had an x-ray performed. Much better but still some fluid left. The next question to answer was whether he needed a new drain (probably still does) and if so do we go to theatre at midnight or tomorrow during the day. Eventually it was conceded that William was not going to suffer by waiting until daylight for the procedure and that we will see how things are in the morning.
Maybe it was because of the increased fluid but Wil was certainly having a few more hallucinations today. He was seen by Robert Ouvrier (Wil's neurologist) again today who reinforced his opinion that these would settle. He also felt that William was blind at present but that he thought there was a good chance of recovery. The pathways to the appropriate part of the brain are all intact, it is just that the visual part of the brain which was damaged is not recovered sufficiently yet.
William had an EEG again today. This time he was hallucinating some of the time, generally unsettled for some of the time, co-operative for a tiny bit and asleep at the end of it. This was great! We had good EEG readings during all of these times and we could confidently see no epileptic activity associated with the hallucinations. That seems to rule out visual seizures. We are still playing the waiting game though and Wil will improve as quickly as he improves. Time frames are still impossible to pin down.

Counting

2010-03-17T23:42:00.000+11:00

William is gradually improving.

His sedation has been weaned a little and so he is a bit more agitated and he does take a lot longer to settle. He did have some more hallucinations about tigers and spiders today when he was given some time off CPAP.
But he is also showing some promising signs. He was a bit distressed during his echocardiogram today. When it was nearly over we started counting with him. He started saying a few numbers along with us. We got to seven and paused. William didn't - we clearly heard "eight.., nine..." come through his CPAP mask. We were very happy to hear that our little boy was still counting.
He has also opened his eyes a couple of times briefly today. Not long enough for us to tell if he is looking at us but nonetheless he is getting there!

Unfortunately his femoral line is not bleeding back and he will need more jabs to collect blood.

His CPAP is being weaned back and he will have short periods of time without it in the coming days. He tolerated 30 minutes this morning and was really good for over an hour this evening. The physio also seems to be helping. He is getting his chest physio four times a day, the last one at around 11pm at night. It is a big day for all and especially for William as he puts in this huge effort to get better.