Clean and Clothed

We gave B a 'bed bath' this evening. After his poo explosion yesterday and being covered in residual stickiness from all the dots, tape and dressings, he definitely needed it.

Then he got to put on clothes. They've just decided to keep the last peripheral line in his foot for now as a precaution and it doesn't fit in his growsuit so we left that foot out. His swaddle bag went nicely over the top. I put him in it, pulled the bottom zip up a little and threaded all his monitoring wires through before hooking them back up again. Snuggly. :)

Oh and today he had his nasogastric tube out. He also had another echocardiogram and ECG as well as a chest xray. Echo and ECG were fine except the echo did show a tiny leak at the edge of the patch and they found that 2nd VSD again but it is smaller and they are confident that both things will close by themselves in time. The chest xray showed a few dark patches on his lungs. Shouldn't mean any major problems, just something they're keeping an eye on.

Open Heart Surgery - Wound, Drains and Pacing Wires

(Plus a few monitoring wires visible)
Day 4 post-op. He just had the drains and pacing wires pulled out.

Exhausted

Crazy day yesterday. B was really unsettled in the afternoon. Turns out he had a sore tummy and he did an explosive poo everywhere, all over his tubes and wires. The nurse had to get him cleaned up, pulling dirty stickers off and putting new  ones on etc. It took quite a while and he wasn't a happy baby.

He was finally able to have a feed and after was really tired, ready to go to sleep. He was due to have another dose of ABs put through one of his peripheral lines except the pump kept saying there was an occlusion. Turned out the line was leaking and he'd require a new one put in. Everyone was really busy though as there'd been a MET call for another kid on the ward and new patients from ICU coming through. The doctor was available when the nurses weren't and vice versa.

Just before midnight a guy came in to get a new line in. It was a very stressful and unsuccessful 45 mins as he tried to access the tiny veins in B's arms, hands and feet. Poor B was screaming. They gave up and called the doctors who agreed to B finishing the rest of the AB course orally.

This morning the doctors came by on rounds and took his dressing off. His wound doesn't look as bad as I was expecting, it's narrow and clean.

He's just been given a sedative and pain relief in preparation for taking his drains and pacing wires out. Later on today he'll hopefully also have his nasogastric tube out.

Yay! He's officially off fluid restrictions! He had his first really good non-restricted breastfeed since before the op and has fallen asleep happily and peacefully.

Everyone is saying that everything is looking good. Tomorrow is Day 4 so he should get his drains and pacing wires out. I am daring to hope that we be home sooner rather than later.

Yesterday Baby Bear started having episodes of bradycardia. It wasn't too bad, only in the 90s until later in the evening when it dropped to the low 60s. That caused all the alarms to go off and nurses to come running in.

They did an ECG and the results were okay so after the nurses, doctors and cardiologist consulted, it seems it's just one of those things.

The cultures that were done yesterday came back fine. Possible signs of a slight UTI, maybe from the catheter during surgery, or it could have been due to some common post-op lung thing but they gave him antibiotics last night and he hasn't had a high temp since.

The docs just came by on their round and I think they may be taking him off fluid restrictions. I also asked about removing his central line as two of the lines are blocked and as long as the two peripheral lines in his feet are working then they will take the CVC out today.

And another breastfeed! :) He's still not able to have as much as he wants but he's much happier and more settled.

A New Room

 

They moved us to a new room this afternoon. We're still in Koala Ward, just in another 'pod' (the ward is kind of like a starfish shape and each arm is called a 'pod'). 

The room is pretty much the same as the last one except now we're right next to the nurses station for this pod (you can see the green chair and desk of the station through the doorway). 

xx

Mama 

He had a feed! A proper breastfeed! It wasn't very long because of the fluid restriction and it took him a while to latch on and get sucking, but once he got going he had no problems. :)  :)  :)

Poor Baby Bear. The fluid restriction means that overnight he was only allowed to have 30ml of EBM every 3 hours. He woke up every 1-1.5 hours, starving and extremely cranky. I had to try and settle him until until we reached the 3 hour mark. By about 4am I worked out that massaging the small amount of free space on his legs calmed him enough so that he'd sleep for a little longer. He's always loved being massaged and I've done it after every bath since he was born. 

In the early hours of the morning it became apparent that Baby Bear had developed a fever. The doctors did the rounds late in the morning and upped his fluid intake to 45ml every 3 hours, as well as ordering a whole bunch of tests to check for an infection. 

It's been one of those mornings where I get Baby Bear to sleep just in time for someone to come in and start poking him. The ward doctor came in and put another line into his other foot so that they could take blood (so now both feet are bundled up, leaving even less room for his massage); a urine catheter put in to get a sample; a suction catheter used to get samples from up his nose; the mobile xray machine wheeled in to xray his chest. 

He's now due to have more EBM and meds but has fallen asleep, absolutely exhausted. My poor baby boy. And I can't make it better for him . :(

Our Room

Hello my boys, 

Now we're in a part of the hospital called the Koala Ward (we stayed here the first time we came to hospital too but in a different room). This is where they look after kids with heart problems. 

 

This is the view out of our window at sunset.

This is the bed I get to sleep on. The green back of it lifts off and then I can put sheets and blankets on it. There is a drawer underneath where I can put the sheets during the day. 

xx

Mama