Recovery from heart surgery | Day 6

A really good day – lots of smiles, laughter and general joviality

You could almost forget we’re here because Hannah has just had major heart surgery (less than a week ago!)

9am
Came in at 8 to find Hannah up & dressed and having breakfast. She’d managed her half shower etc by herself!

She’s had a good night and is almost back to her usual self. Still hurts to breathe but has managed to reach yesterday’s highest volume again in her breathing exercises (just under 2 litres).

X-ray today again to see how the pneumothorax is doing.

Now she’s back to making loom-bands,  so she must be better! 🙂

First comedy moment of the day:
Maggie, Hannah’s overnight nurse, nodding her head towards Simon and saying “I don’t know how she slept with his snoring!”

11.30am
Ryan, the self-professed “physio-terrorist” has been.  He’s very happy with Hannah! He’s had her walking up and down the stairs and doing some harder (long&slow) breathing exercises. No need for her to see physios again unless anything deteriorates. Carry on with hourly breathing exercises and long walk including up and down stairs, 3-4 times per day.

Ward rounds have taken place. Consultant (Dr Paul Miller, an excellent Consultant…he was an excellent Registrar on Dr Wright’s team when Hannah first started being seen here.  It was great to see him again) is very happy with her progress and how well she’s looking despite the pneumothorax.

He said it’s not a tiny one they’d just leave alone and not a massive one they’d automatically drain. They’ll take another x-ray today and have a look. If it’s shrinking they’ll just give it time. If it doesn’t look like it’s reducing, they may have to drain it. Of course if it’s bigger they’ll have to drain it.

We’ve also established, thank goodness, that as we don’t live around the corner, they’ll be in no rush to kick her out until they’re sure she’s absolutely fine.

He also said the heart and new conduit sound great.

Emotional moment of the day

I told Kate, Hannah’s nurse, about the letter Hannah had written to Mr Brawn before coming in so she could let him know Hannah’s well enough to chat to him. Kate said she’d seen the letter and had got a bit emotional…which of course got me welling up…and Hannah rolling her eyes at me!

Round-up at the end of the day, before I go to bed:

• X-ray much better…Pneumothorax going down. Will see if can get her home for the weekend. Keep up with walking and breathing exercises.

• One of the three chest drain wounds is a bit puckered and ‘icky’ / slightly oozing. A bit sore. Swab taken (results 48 hrs) and cleaned up by nurse. Stitches should come out of those tomorrow.

• Charlie brought in bacon brownies that she finished baking late last night and they were delicious!  Perfectly moist.  Yum!!

• Hannah ate a full portion of horrible over-cooked hospital spaghetti bolognese! It’s the first full portion meal she’s eaten since her surgery…her appetite must be increasing!

• Yesterday, I installed the Sky Go app on my phone…today I was able to watch the first episode of the new series of ‘Scandal‘ with Charlie, on catch-up.  Yay!!! We’d waited for that for months and it started while we were on holiday.  I couldn’t watch it without Charlie when we got back and then of course we’ve been in hospital.  We can catch up on episode 2 tomorrow and episode 3 on Wednesday! 🙂

• Some thoughts on emotions while in hospital:

  • When you’re in hospital with your child, all emotions become amplified; the good and the bad.  You’re suffering from sleep deprivation (even on really good nights when nothing dramatic happens, you hear alarms/beeps all over the place, nurses come in to do observations on your child, other children cry on the ward etc) and you’re worried.  When things go well, you’re jubilant.  When things take a turn for the worst, you can be devastated even when it’s not major setbacks.  And it’s awful to watch your child in pain.  So after the really difficult night, I felt really tearful yesterday.  I was so exhausted I felt myself swaying when bending to help her get washed & dressed and when I walked to parents’ accommodation, I could barely push doors open because I was so tired.  I wondered what else the days ahead had in store for us and had spent half the night listening to my extremely brave little girl suffering and refusing morphine when she couldn’t have another dose of paracetamol.  Then, the day took a turn for the better and she had a fantastic day.  We went for that lovely walk in the gardens and took those fab ‘selfies’.  And then the Pneumothorax reared its ugly head again and we worried that she’d end up back in surgery to have a drain fitted.  So many ups & downs, so many emotions! I went to bed with trepidation last night, not knowing what I’d find this morning, but today has been a wonderful day.  Over the years, we’ve learnt to take the highs and lows and not to have too many expectations one way or another.  To some extent it does get easier, but in some ways it’s harder because we know that there are always setbacks, so when things are going great, we’re expecting the setbacks to come, eventually.  My over-arching emotion, though, is relief and gratitude.  I feel so, so lucky!  Not just with how things are going this time, but in general with both our daughters.  We’ve been to hell and back but we have the most amazing daughters and they’ve done so much better, so far, than anyone expected.

• Small downer on the day today: Hannah’s phone and iPod have gone missing!  We were moved into a different room mid-morning as they needed the single en-suite room for infection control (we’re now in the back part of the 2-rooms-in-one we were in the other day).  We grabbed everything and didn’t realise until afterwards that Hannah’s phone and iPod weren’t here.  We emptied every bag and every drawer, we looked everywhere, including under her mattress and inside pillow-cases.  There is a small possibility they may have been stolen (awful to think, but just because people are in hospital with their children, it doesn’t make them all lovely and decent, so it’s not impossible…and in fact theft does happen and I saw notices in Intensive Care, of all places, about looking out for valuables as there had been a few thefts recently!!), but what looks most likely is that, when Hannah went into the bathroom first thing this morning to get washed and dressed, she left her iPod and phone on the bed (she’d been listening to the iPod and using the phone to go on Facebook beforehand).  Her bedding was changed while she was in the bathroom and when they do that, they just grab all the bedding in one go, so wouldn’t have noticed if there was stuff in it!  Nurses did go back to the isolation room that had been Hannah’s, to check if she’d left them on window-sills etc, but no sign of them.  A nurse even went into the sluice to see if the bedding was still there, but it had already gone down to the laundry room.  As it was then mixed in with all the laundry for the entire hospital and  they don’t go through the piles to check for objects before putting them in the wash, it’s now lost.  Damn! 🙁  Hannah was devastated, and I did tell her that it’s good she’s upset about it as she needs to look after her stuff (even though my heart was aching for her at the time and all I wanted to do was give her a hug, which I did anyway), but we also told her that in the grand scheme of things and in light of what we’re here for, she’s lost stuff that can be replaced.  It’s not the end of the world.

• Still more improvement on Hannah’s breathing exercises.  She has 2 different ones to do now:
  • Do big breaths to get the base as high up the column as possible (she’s beaten another personal best today!)
  • Do long, slow breaths, getting the base as high up in the big column as possible while getting the ball in the small column to float in the middle of the column rather than going all the way up the way it does with the big massive breaths.  This one is really, really hard! She keeps getting better and better at it though 🙂

Proud moment, just before bed:

The night-shift nurse came in to do observations and said “You must be so proud of her.  She’s lovely!”  Yes, I am.  Very, very, proud of her! 🙂