So today was a long one for Ted. 



After a very difficult night we managed to make a little bit of progress on Ted’s anxiety about dressing changes. His play therapist worked so hard to prepare him. 



However the procedure itself was quite traumatic for Teddy and not long afterwards I managed to get him to bed for a long overdue sleep. 



The cardiac team have now sent an urgent referral to the psych team so that someone else can come on board and help Ted work through his phobias. Unfortunately for him, he faces a lot of medical procedures so having a terrible phobia of them is he last thing he needs. It has now escalated to the point where he is crying as soon as a nurse enters the room. So sad! 

Tomorrow he has another blood test and again on Monday. Horrible. 

In good news we were so touched that our friend Debb arranged for the turtles to send Ted a get well message. He loved the photo!



We also had a wonderful visit from our friends the Campbells who came with amazing food, gifts and laughs and most importantly they brought back Ted’s huge grin for a while. 



After Papa went home Ted asked to visit the Starlight room again. This time he was very quiet but he did like playing on the iPad for a few minutes. 



Ted’s play therapist spoke with the cardiac nurse consultant and they out this sign up in his room. 



Poor little fellow has been very out of sorts tonight and I have had to resettle him to sleep now 11 times in two hours. What a long day! 

While he has been very unsettled all day we have had glimpses of our happy boy. Tonight he took this selfie of us :



Hard to believe that yesterday was one week after surgery. Ted has come so far. 

After a tricky start to the day he enjoyed some time with special visitors and loved playing with all of his new toys. Thank you so much Bec and Jenny. 







In the afternoon Ted was so excited to receive this giant delivery of balloons. So much love and thanks to his amazing teachers at Redlands for these awesome balloons and the cuddly polar bear! 



We also had a wonderful visit from the Clown Doctors





We snuck in a visit to the sensory play room with Karen Ted’s beloved play therapist





Before dinner as promised we visited the Starlight Express Room with Papa





In the evening Grandma and Grandad visited and brought some delicious cakes. Also they delivered some music CDs from Ted’s lovely music teacher  and they told us all about the giant eggs Mrs Anderson brought around from her hens. 

Unfortunately bed time wasn’t much fun and Ted was up all night again. Screaming and crying and having some night terrors. He also started spitting out his meds and hitting me so it was a long night again. 

Today we don’t have any needles on the cards thank God but he does need a dressing change. His left pleural drain continues to flow at about 150ml per day. To remove it they need to see it reduce down to about 20ml. So we have a while to go. 



Richie thought I was too ranty but clearly my email worked. We have been moved to an isolation room and as long as an infectious cardiac kid doesn’t arrive then we can stay. 

What a difference it will make. We have a single room yay!!



Ted was distraught over his blood tests and refused to even look at the doctors in the cardiac round but look here… We have a smile now:



My friend Leva sent this bounty of talking teenage mutant ninja turtle goodness. Ted is thrilled! Thank you so much. 

We have managed to delay the dressing change for a day so hopefully we won’t have to torture him any more today. 

So so happy to have our own space. 

Unfortunately we have had another bad night with noisy neighbours and nurses. 

I’ve made a complaint and it seems I’m now the most despised parent on the ward. Lots of nurse glares for me and my care factor is sitting at about minus fifty thousand. 



Ted is so tired and cranky that he has spent most of his awake time this morning crying and begging not to have a special heart anymore. 

I’ve punched out some narky emails to the heads of the department which I’m sure will serve no purpose but to make me feel slightly productive. 

The morning cardiology rounds will happen soon so we should have a plan for the day soon. Apparently an invasive blood test and dressing is on the cards. Just to add to Ted’s low mood. 

Last night was a tough one as the Midazolam wore off Ted was incredibly agitated and instead of just sleeping after a very big day he became a little monster. He woke me up every twenty or so minutes to adjust his blanket, his socks, his pillow his toys… It went on all night long.

So it makes sense that this is how he is spending his lunch hour:



Our roommate has moved on so we stole her spot so we now have the window. 



This morning we were excited to receive a liovely package from Ted’s cousins in Melbourne. Here is Ted with some of the cool gadgets:





The nano robot bug is incredibly cool we have had fun watching it exploring the loop Ted calls a bug roller coaster. 

Ted’s blood work showed he is a little low in sodium due to the heavy diuretic load so he was thrilled I let him feast on super salty snacks before  his nap! 

We are hoping for a calm afternoon after yesterday’s rather agitated one! 

I really feel like Ted turned a corner today. The nurses managed to have him weaned off oxygen by lunchtime. He now has oxygen saturations of about 90 – 94% in room air. Excellent result. 



Unfortunately he did have to have an invasive blood test which distressed him a lot but the good news is that the doctors were pleased with the result. 

After three failed attempts to mobilise Ted we were stunned when he suddenly stood up off the little craft chair and took a step. There was no stopping Ted as he walked with the remote control car whizzing alongside. Chest drains and all!



After lunch Ted had some sedation for a very painful removal of his left pleural drain. While it was distressing for us to watch him, he has no memory of it. Phew!

Later he did some more physiotherapy to help re inflate his lungs. He actually likes blowing “milkshake bubbles”.



This evening Ted had a chest X-ray to make sure everything was ok after the drain removal. He really thought the skeleton sign was hilarious. 



So far this was Ted’s best day. 

Said Ted this afternoon. 

He had a rough time with pain today and then was very disappointed that he wasn’t allowed down to visit the Starlight play room on account of his Morphine infusion. 

Despite his low mood he has on balance had a good day. He had a canula removed and was able to sit up in bed for a minute and then he sat in a chair for a few minutes. This is progress!



Ted was very lucky to have a visit with The Barretts today. We are both looking forward to watching all the shows they brought in the USB. Clever idea! 

When Tabitha came to visit she sat with Ted in the bed until we got in trouble for violating the rule against non patients sitting on patient beds. 



The same rule  Richard  got in trouble for violating today. So I will make sure I am sitting on that bastard bed tomorrow for the cardiology round. On principle. 



To cheer Ted up after his disappointment over not visiting the Starlight room, we had Captain Starlight come to visit Ted. He loved the balloon characters she made for him. 





Lots of the nurses call him Super Ted now. Such a little hero:



We were thrilled to have a special visitor tonight. Andrea arrived with dinner, snacks, goody bags of treats and best of all a remote control car for Ted to zoom around from his bed. The first real smile we have seen since his surgery. Gold star Andrea!! Thank you so much. 



We are hoping for a quiet night from Ted tonight without his saturation monitor alarming all night. We have taped his oxygen prints to his face. Hopefully this will stop him ripping them off all the time. 

To give you an idea of space here is a photo showing how awkward the shared room is. I was told today we have too much luggage. There is no storage dammit. I have one small bag for me. The rest is basic items for Ted. This is madness for weeks. Madness! 



Tomorrow will see Ted having more blood testing and probably the removal of the left pleural drain. 

Til then … Good night from the sardine tin at Westmead xx 





 



Here is a shot of Ted with an amazing gift bag from the beautiful people from Precious Hearts. We love you guys! 

Turned out Ted was also a bit of a grumpy cat today. We have had issues with his oxygen saturations today. 

Four nurses and I pinned him down for the removal of two of the four drains and he underwent a blood test. He was given Midazolam so while he did suffer he won’t have any memory of it. If only they had a dose for mums too!



Unfortunately the silly blood test came back with an INR of 6.8. Hideous drug Warfarin requires constant monitoring of INR. We were then told he would need a repeat blood test or risk him haemorrhaging if the Warfarin is given again when the INR is too high. 

I refused on the basis that it seems unlikely for his INR to jump from 1.8 to 6.8 in a day and I felt it was more likely to have been an abnormal test. Anyway it was a punt that I had to take for Ted. His little spirit is also important. We cannot torture the child. 

A decision will be made in the morning cardiology round tomorrow. Til then we are on high alert for bleeding. 

Ted tried so hard today with the Physio team encouraging him to blow bubbles through a special tube. It is normal for the lungs to collapse somewhat after this type of surgery. 



He had a lot of pain when we mobilised him to have him sitting on the chair on my lap. So I stole a cuddle from him for a while. 



Ted also had a consult with the pain management team and they decided to keep him on the NCA morphine until Monday. Cardiology team have said Ted can now be in free fluids we just have to record everything to remain in a negative balance with the aid of Lasix. 

Ted was chuffed to see Auntie  Kahlee and Uncle Nick today. They spoilt him with Star Wars gifts and cool books and brought me some delicious treats and a coffee that doesn’t taste like envelope glue. What a gift! Here is Ted with some of his toys:



 

Ted was distressed after the first attempt to sit up but he kept trying and eventually Ted was able to visit the cardiac ward playroom in a wheelchair when Papa and his brother Monte and sister Tabitha came to visit. 





Tonight I am home with my baby Houdini Monte and my  big girl Tabitha. Richard is staying bedside tonight. We had a tricky drive home as Monte chose the freeway to begin his car seat escape routine. It took a long time to get home as I had to keep pulling over to get him back in again. Look at him! Crazy. 



He also chose tonight to smash my new glass teacup into a million pieces. Butter wouldn’t melt in his mouth if you go by this face: 



So tonight I can shower and enjoy home comforts while Rich is on Daddy-duty with Ted. My heart is torn having to leave him for the night my poor brave boy after such a rough day but it has been five days since my two gorgeous red heads had their mama so it was time to be here. I will be back at the hospital early tomorrow to swap over. 



I am the grumpy cat. 

I do not have an adequate vocabulary to describe my sentiment for the indignity of a shared ward. 

As if witnessing your child’s suffering wasn’t bad enough, sleeping or attempting to sleep a metre away from a stranger and their shrieking child… Takes it to another level. 

Ted had a restful night. He slept well and woke a few times for water and quickly settled. Today they will get him more mobile. We should know more once the cardiology round is done at 9am. 

In the meantime I will try to bite my tongue. A little more. 

Today Ted has moved to the cardiac ward. 



It has been a difficult day for him with a lot of poking and prodding and he is becoming increasingly distressed by it all. A visit from the clown doctors did cheer him up. We almost got a smile. 



Today he had his urinary catheter out, as well as his arterial line and his central line. And then we had a ride down the hall to the heart ward. Joe the porter is the same porter who moved Ted after all his other operations. I will have to track down some photos from those days as well. 



He is in a two patient room now.



Here is a shot of Ted’s beautiful fruit basket modelling the chair-bed that I have the pleasure of sleeping in tonight in very close quarters with the parent of the child in the bed next to Ted. Privacy? Who needs privacy?



Could be worse. We could be in the room next door with six patients. 

My parents came to visit today and brought me some of the lovely food made by Elizabeth one of the gorgeous mums from Ted’s class. So nice to avoid hospital food now. 

As for me well I am ok. I’m increasingly grumpy about the unhygienic bathroom facilities for parents. I will show you below the mouldy shower and bathroom. 





So gross. 

We are lucky in Australia that healthcare is free for everyone and while I am glad that all children here have access to the best cardiac surgeons and cardiologists I do wish I could use our top level private health insurance… 

There is no private paediatric option. We could do with a wing annexed to the hospital. The fees it would generate could fund the rest of the hospital. Oh well what do I know? Im not into politics. At least we know Ted is getting the very best care. It just isn’t comfortable for us!

I was hoping my cough might score us a single room since infectious people are usually isolated. No such luck. I just have to wear this mask. D’oh! Serves me right for exaggerating my cough.