One thing we need to be very vigilant about with Alyssa’s condition is gastro (or any prolonged vomiting or diarrhoea) as she will be unable to maintain adequate blood-glucose levels, so the metabolic team have warned us that should this happen, we’re headed straight for hospital. So the good news is that Alyssa’s first experience with a tummy bug arrived while she’s already in hospital. She’s not a very sicky baby (thankfully, after having two sons with reflux problems) so when she had a big chuck on Saturday morning I was a little anxious about it. We checked her BSL after a couple of hours and it was low, but within acceptable levels. She continued to bring back milk after each feed – not a lot, but enough to be extra cautious, so we’ve been monitoring her blood/sugar levels more regularly. They continue to be lower than they normally have been, but still acceptable, so she’s continued to feed as normal.
She doesn’t look terribly sick though – still as cute as ever.
She had two big vomits through the night last night (two clothes changes over night) and she has been a little more tired than usual today so I did give her a tube feed top up at one point but she does seem to be vomiting less than the last couple of days. The doctors and nurses understand how serious it is for her and have been keeping an extra close eye on her when I’m not around. They were thinking of putting her onto the dextrose drip for a while but with her BSLs being ok they’ve left her for now.
Keeping the fun and games in the family, Alyssa gave her tummy bug to Warren who ‘enjoyed’ some quality time with the toilet bowl over the last couple of days while keeping the theme running and passing it on to young Liam, who hasn’t coped quite so well as Alyssa with his ‘I’m siiiiick!’ The poor young guy has been just miserable company so I’ve been told and last night when I got home from the hospital he sat and cuddled me quietly on the couch for an hour or more, barely moving and barely awake. He looked quite the pro at throwing up over the toilet – must have been the 9 months of watching me bent over a toilet while I was pregnant with Alyssa. He was always so caring and supportive when I was being sick, often standing beside me watching and patting my leg – it was weird being on the other side this time.
So Warren and the boys, sadly, haven’t been able to come and visit Alyssa for the past two days which has left it pretty lonely for me and her but it’s better not to risk her getting any sicker. We’re so close to getting her home with us now that we just don’t want to be told we have to stay while the bug clears up.
We did get a lovely visit from Warren’s parents and his Grandma yesterday though, which was a nice way to break up the day. It was Grandmama’s first visit with Alyssa (we were in the NICU and couldn’t have visitors when she first came up to visit) and she had a lovely first cuddle with Alyssa quite enjoying the comfort, snuggling up and falling sound asleep.
We also had a couple of other friends quickly drop in to say g’day which was nice. It helps to break up the quiet of the long days.
When I arrived for Alyssa’s first feed this morning and had dealt with the vomity blankets at one end and then with the escaped poo down the other, I noticed blood on her blanket, which startled me. Her cannula line had started to bleed back quite heavily and had started to leak out of the connections. The blood had seeped into at least 20cm of her line, where it would normally only be a cm or two of back flow, so we were a little concerned. Sarah, her nurse, gave it a saline flush to push it all back into her vein and the IV was still working really well so we left it alone and just alerted the doctors. It continued to bleed back a bit through the day – never as much as this morning, but enough – so I wouldn’t be surprised if they try to give her a new cannula tomorrow.
Her paediatrician said they’d probably give her a new one and hope it lasts until Saturday but if it packs it in by Thursday or Friday he’d be happy that she’d had enough antibiotics by that stage. Apparently the infectious control specialists in Melbourne had told our doctors that they’d prefer 4 weeks but 3 would be enough if her veins wouldn’t co-operate. I have to admit, as much as I definitely want her all better, if her cannula didn’t last and we took her home a day or two early, I don’t think I’d be too unhappy about that – so long as they’re satisfied she’s over the infection.
An ultrasound is booked in for tomorrow to check the infection in her arm so we’re looking for some really good news. Blood tests have all come back good, so here’s hoping it’s an all clear verdict. The orthopaedic doctors visited again this morning (all 6 of them today) and were really pleased to see her throwing her right arm around all over the place and to feel a big improvement in her hand grip. She’s also been rolling side to side a little, lifting her shoulder clear off the bed, the clever little thing – so it’s looking good that there’s been no long term damage but she’ll still need some physiotherapy to strengthen her muscles again.
And the clever little monkey has also figured out in the last 48 hours how to reach for something and grab hold – it just happens that the best thing she’s found to reach and grab has been her naso-gastric tube or her IV tube, so anytime they’re in her eyesight she takes hold and yanks. All day long I’ve been pulling her NG tube back behind her where she can’t see it, and taking the IV tubing out of her mouth. She’s found a fun game in chewing on the end of the IV cap – cheeky thing!
It has been amusing to watch though – she’s getting stronger and smarter every day. It’s just great to see her happy with everything she’s been through.