A child’s recovery from heart surgery can be extremely rapid or excruciatingly slow. Hannah’s first open heart surgery in 2000 resulted in her spending 2 weeks in intensive care, struggling to breathe, being extubated and re-intubated more times than I dare to remember and contracting all manner of nasty infections. This was follwed by 2 weeks on the cardiac ward. Charlie’s recovery from her big open heart surgery in 2001 was so fast we’d have missed it if we’d blinked: 1 week from start to finish…but then she was rushed back in with complications and took another 4 weeks in hospital to recover.
We therefore have no expectations one way or the other with Hannah. ‘Typical’ is 7-10 days post-surgery, with just 12-24 hours in intensive care.
3.30am
Just got back to intensive care to take over from Simon. His turn to get a bit of sleep.
Hannah has warmed up nicely…too much. She’s now got a fever! 38.8°C 🙁
Everything else is moving in the right direction but not quite ready to have the ventilator tube out. She’s on slightly reduced ventilator support but only breathes over it when awake. Oxygen down from 30% to 25%. Some of the drugs have been reduced / taken off.
Drainage tubes have been checked and they’re happy with them; she has a slight pneumothorax (air between lung and chest wall) on one side and one of the chest drain tubes is doing its job in clearing that.
She has been getting quite agitated when awake and tried to signal she wanted the ventilator tube out, but seemed to understand explanations as to why it needs to stay in. Luckily she’s managing to stay mostly asleep.
At one point she was trying to communicate (can’t speak with breathing tube in). They tried with a permanent marker and paper but that didn’t work. Then they got it: She was telling Simon “I love you”. Awwwwwwww
5am
The last half hour or so has been really difficult. Hannah keeps waking up and crying, getting agitated and upset.
With the paracetamol, cooling bags and fan on her, her temperature had dropped a little, to 38.3°C, but with all the agitation it’s gone back up to 38.6°C
She started using sign language (she know a bit from when we had deaf neighbours and also learnt a bit at school) but the nurse said it was different from when she said ‘I love you’ to Simon earlier and can’t work out what it is. Hannah tried to write instead but can’t hold the pen well enough yet.
At one point she was indicating she wanted to cough. We told her she could…even though it’s strange because she can’t hear it, she’s still coughing. Gave her some suction with it. Nothing there. Probably just the tube irritating her.
I think she was saying Charlie at one point. Probably to say Charlie could interpret her sign language .
I feel so helpless for her 🙁
She managed to indicate she wanted to sit up so the nurse raised her bed a bit.
She also said she’s thirsty but can’t gave water while she’s intubated. She can just wet her lips with a wet dressing pad and such on it a little. That seemed to help a bit.
She pointed to her naso-gastric tube (NG tube) and her breathing tube and I explained what they were.
She said she wanted her tube out but had to explain she’s not ready yet and if we took it out too early and had to put it back in, that would be worse.
At one point during a coughing fit and while the nurse was suctioning secretions out of the tube/her chest, she got extremely agitated, mouthing that she couldn’t breathe. Her O2 Saturations were good, her colour good. We calmed her down and said although it feels like she can’t breathe, she is getting oxygen and is breathing. ..The machine is helping her with it and she’s fine.
The nurse has taken her blood gases and the lactate is down again so it’s definitely going in the right direction.
Over the past 15 mins Hannah has settled down to sleep again. Hope she sleeps for a while. It’s awful to see her in such distress (she’s not in pain, as such, as she keeps saying ‘no’ when we ask).
5.45am
Just seen Dave, the Nurse Practitioner. He’s very happy with how Hannah’s doing. Has turned down the sedation and the ventilator support so she can start doing more of her own breathing. He’s hoping they can start progressing to getting her off the ventilator quite rapidly now!
Fingers crossed.
Temp back down to 38.4°C
6.20am
Ventilator breathing support is minimal now. It’s giving her the pressure support but she’s pretty much initiating all her breaths. O2 Sats kept dropping really low so they’ve increased oxygen back to 35%. Blood pressure better.
Hannah was in a bit of pain so Dave’s adjusted the pain medication. She mouthed that she felt sick and they got bright green bile out of her NG tube (normal to have that in the stomach after surgery like this one as the prolonged anaesthesia makes the stomach slow to start working/digesting again.
Dave just ordered a chest x-ray to make sure the pneumothorax is clearing.
7.15am
Hannah is doing all her own breathing with just pressure support (CPAP) from the ventilator at the moment, though they have had to put her oxygen up to 40% .
It’s all moving in the right direction anyway. Keeping everything crossed.
Fever still high so she has new ice bags under her armpits and over her liver to try and cool her down.
The ICU department is well and truly awake now. Noisy. All blinds open. Lights on full. Sunlight streaming in, blue sky outside.
Dave just came along as I was writing this and turned down CPAP support and oxygen back to 35% . It’s all about tweaking all the settings along with how Hannah tolerates things and sometimes we move forward, sometimes we move back, but eventually we hopefully get there.
Hannah is luckily sleeping well on her painkillers since Dave tweaked them up again. She even slept through her x-ray, including when they had to get the plate underneath her.
9am
Simon’s back and she’s now got Hannah’s iPod, which will help distract her from all the beeping noises etc.
Just had ward round. Plan is still to extubate today, but not yet. Because they had to give her so many fluids, her lungs are very wet so they have to give it a few more hours on the diuretic first to get rid of the excess fluid.
Because she’s been getting quite distraught without the sedative…trying to pull the tube out, repeatedly asking when it’s coming out, crying and coughing….they’re giving her a bit of Midazolam to settle her down and make her comfortable again.
A couple of cute (she’ll throttle me when she reads the dreaded “c” word. We’re banned from using it..along with ‘sweet’ and ‘adorable’ lol) moments:
1. Earlier on, she tried -and partially succeeded to – twist around and give me a big hug and even managed to pucker up and smack her lips into a kiss.
2. She told me she was feeling sick. They got a load of green stuff out of her naso-gastric tube. She then tried to ask a question and luckily managed to write it down as I’d have never got it from her gesticulations. “Is the green bad?” Once we explained it’s normal as her stomach hasn’t quite woken up yet, she was fine.
3. She asked, by gesticulating, for me to take a photo…and even managed a smile.
4. And this one broke my heart a little bit: Through lots of gestures and trial and error, I managed to understand the question “How long was my operation?” When I told her 9 hours, her eyes shot open, wide as saucers, and she mouthed “SORRY” 🙁
11.45am
What an emotional and draining morning! Can’t believe it’s not even midday yet!
2 steps forward 1 step back.
She’s still doing really well, but her lungs are too wet to extubate her yet (due to length of surgery and all the fluids they’ve had to give her, as well as the desired effect of the surgery itself…All the sudden extra blood flow to her lungs).
She was getting quite distressed…trying to say things and struggling to be understood, being uncomfortable, thirsty etc. As they have to give the diuretics a few more hours to work in getting rid of the extra fluid, they’ve given her a really strong sedative more akin to anaesthetic – Propofol (also known as ‘milk of amnesia’)
It means she’s zonked and not struggling and crying any more …but also means that she’s too zonked to breathe properly so they’ve had to put her back on full ventilator support for now.
Unlike Midazolam, the sedative she was on before, this one stops working the minute they turn it off, so once they do that they should still be able to wean her off the ventilator fairly quickly and extubate later this afternoon or this evening.
Meanwhile, the tube was a bit too high up so they’re now putting a new one in, moving her into a better position on the bed and getting underwear and PJ top on her so that she’ll be more comfortable when they wake her.
She definitely knows how to tug at the heart strings though….
Earlier she did another “I love you” pointing at both Simon and me…and then she mouthed “I miss you” and that she wanted a big cuddle with both of us. We gave her as much of a group hug as we could and lots of kisses….poor babychick.
1.30pm
They sorted Hannah out but then didn’t want to put bra and PJ top on her as she’s still hovering around 39°C with her temp.
She was well and truly zonked throughout but then when they wanted to do physio, she was suddenly very awake and determined to yank her ventilator tube out (and crying and upset) because the Doctor had turned down sedation just a little.
To be fair, the last thing the team leader nurse said to her earlier was that they’d help her sleep so she wouldn’t be bothered by the tube and that when she woke up, they’d take the tube out. So as she woke up, that’s what she expected. But I think hers was more of an instinctive reaction and also a bit of aggression / combativeness coming out as a side-effect of the sedative.
Turned sedation back up and she was zonked again. Managed to do physio and establish that there are no secretions low in the lungs that they need to deal with in order to optimise her lungs for extubation. Good! Her lungs are clear.
Unfortunately the high sedation is lowering her blood pressure again. They then give adrenaline to raise it, but too much and she wakes up all agitated. Her temp is still around 39°C as well. More paracetamol.
They want her around 1litre negative on fluid balance before they extubate. She’d got to 500ml negative but then they had to give her fluids to raise her blood pressure plus also paracetamol (which was an additional fluid) so she was then slightly positive again.
It’s all a fine balancing act!
They promised us they wouldn’t let her get distressed and would top up her sedation if she became agitated. They’re trying to achieve this balance with slightly lower sedation so she can be chilled out and nor get distressed but also be alert enough for them to start weaning her off the ventilator again.
With this in mind and as no thing’s likely to happen for a couple of hours, we’ve gone back k to our accommodation to have lunch and a bit of rest. They’ve promised they’ll call if she becomes more alert, even if nor distressed as we don’t want her to be alone if she’s awake.
It could be a long might and we’re already exhausted so we need some rest to make sure we can get through it.
Amongst all the above, there was a bit of a comedy moment:
They’d raised her bed really high to get her cleaned up and tidy up her bed etc but then it wouldn’t go back down. None of them could work our why. They called in another nurse who must have a reputation for sorting out uncooperative beds. She couldn’t work it out either until eventually by some fluke she and another nurse pressed same button on both sides of the bed simultaneously.
Lots of giggles all round 🙂
……
Hannah was eventually extubated around 4.30 or 5pm.
She was very agitated and kept trying to pull out her NG tube. She also had an itchy nose because of the morphine and was given piriteze to help.
She eventually yanked out the NG tube with a flourish and a very self-satisfied look on her face!
She also kept pulling off the oxygen mask so eventually we gave up and just had the big humidified oxygen tube by itself and wafted it in her direction. We put her cuddly dog, Flipper, to good use by attaching the tube to his collar and positioning him strategically near Hannah’s face.
Hannah was very sleepy and tearful in the evening.
She apologised again (how many times does she intend on breaking my heart this week?) for keeping me and Simon up and told me I could go to bed if I wanted to (when she was drowsy earlier she said I couldn’t leave her bedside even when Simon comes back lol). As if we’d leave her! 🙁
Other things she came out with in floods of tears:
•”I feel like a big wuss”
•”I’ve been in intensive care 2 weeks” ( when told her she’d done really well). She must have remembered that we’d told her in the past that that’s how long she was in intensive care for after her first operation
• I’d dropped to sleep in recliner chair next to me. She called me, then asked me what time it was. I told her ten to midnight.
She burst into tears “you’ve been awake all day”
12.30pm
Big move from ICU bed to ward bed, ready for morning move to ward. She helped move across by pushing off with feet and lifting bum.
Was expecting all her figures to go wild as a result but stayed nice and stable.
Decided she wanted to sleep rest of night and combine all her water allowance for big drink in the morning.
2.30am
I woke up when Simon came to do the 2nd half of the night on the ICU. I’d gone to sleep in the recliner chair next to Hannah’s bed and she was sleeping soundly. Hoping the 2nd half of her might is restful and uneventful.
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