Warren yesterday wrote that Alyssa’s long line cannula had packed it in overnight and they weren’t sure they could get another one in – she’s running out of suitable veins the poor little thing. At about 3pm the doctors took Alyssa for a wander to the treatment room to attempt to insert another long line. She was due for her next breastfeed at 3:30 and they told me she’d be back in time for a comfort feed so I sat around waiting for them to finish (with Natalie’s wonderful company) but things were a little anxious when there’d still been no sign of her at 4:30. Warren had arrived at the hospital ready to take me to my surgeon’s appointment at 5pm and I wasn’t going to have time to feed her. I was starting to worry about her blood sugar levels crashing (not sure why when she was in the care of very capable doctors but that’s the Mum in me I guess) so I had one of the nurses go and do a BSL for me and prepared them to do a bolus feed (down her tube) when she was out. Her BSL was almost 6 which surprised us until the nurse reminded us she’d been sucking on sucrose for pain relief which had been boosting her levels, so she was more than fine – just probably a little hungry. But they fed her in my absence and we came back for a goodnight breastfeed after my appointment.
I was glad for Natalie’s company in the afternoon though – kept my mind focused on other things instead of my little girl being poked with yet another needle. I got upset in Emergency the other night when it took two attempts to get a cannula in me – darling Alyssa has had half a dozen now. Natalie and I hadn’t really seen each other since uni days where we trained to be teachers together so it was great to catch up and hear all about her little boy Benjamin, who is only a couple of months older than Liam. She also made me some yummy biscuits too which was very much appreciated.
Earlier in the day we’d also had a visit from another teacher friend, Monique and her daughter Stephanie who is a couple of months older than Liam as well. Because Alyssa’s drip had been disconnected, we were free to move around beyond the confines of our little room so I spent the morning on the couch with Monique in the kid’s playroom. It was just so nice to take her out of that room and relax with her – even better with such wonderful company. Stephanie thought Alyssa was pretty special and gave her some cuddles and kisses which was just adorable.
Alyssa has been very spoilt by Monique and her amazing artistic talents. Monique has some gorgeous designs that she puts on cards and canvases and she made Alyssa a birth canvas which just blew me away – it’s absolutely gorgeous. I only wish I was half as talented. She makes a great teacher too but I swear she should give up and focus on these creations to make her millions. I’d be one of her most faithful customers. The canvas now decorates Alyssa’ ‘hospital bedroom’ and I can’t wait to take it home with Alyssa and put it up in her real bedroom.
Last night the doctors eventually gave up on securing a long line and just inserted a little cannula in her right leg. They’re hoping it will last until the end of the week and she will probably need another one in her other leg over the weekend. The orthopedic surgeons visited again this morning and are really pleased to see Alyssa is moving her right arm around quite naturally and comfortably. They’re happy for her to go home once she’s finished her course of antibiotics. The doctors have said that they’ll keep her on the iv until Monday and they’ll do a blood test to see if everything has returned to normal (apparently yesterday’s blood test has shown a significant drop in whatever it is they are looking for and she’s only just above the normal range which is good news). Then they’ll be able to send her home with some oral antibiotics (yay for naso-gastric tubes) to make sure they definitely kill off the infection. So we’re stuck here for a few more days but the end is near.
The surgeon I saw yesterday was keen to get me in to surgery as quickly as possible (yay for private health cover) so I’ve been booked in to have my gall bladder out this coming Friday. It is a keyhole surgery procedure so as long as everything goes ok, I should only be away from Alyssa for one night and the nurses will just be able to bottlefeed her EBM in my absence. I just have to express milk every chance I get between no and then to ensure I have enough milk left for her – otherwise we have Soy formula ready and waiting. I’m definitely nervous about the op – it’s my first operation ever – but I’ll suck it up and take my cues from my brave little girl, currently sleeping peacefully in my arms while I type all of this out one handed, and be able to tell her when she’s older that I went through surgery not long after her so I can understand what she’s been through – well a little bit anyway. She’s definitely a hero in my eyes – what a little survivor! I’d say I look up to her but she’s still too short for that 🙂
Evening Update:
One of the doctors seems concerned that perhaps Alyssa isn’t weighing enough – we were told by the metabolic team that she would always be in the lowest percentile for her age – and they want to up her feeds at night from 25mls an hour to 28mls. I know it doesn’t seem like much but when it was suggested the other day I said I’d like them to contact our specialists before making any changes and they didn’t so I told them to leave it at 25mls, which they did. So yet again I told them to discuss the changes with Melbourne and they wouldn’t so I’ll be calling Maureen myself tomorrow to let her know.
We have no problems with doctors making changes to help her but all we ask is that they collaborate with Alyssa’s dietitian because that’s who we’ll be dealing with for her feeding schedule from here on and they need to know of any changes. I really don’t know why they seem to get so uncomfortable about us suggesting they seek advice from specialists – it seems to petty. I was pretty pleased with her weight gain anyway because she didn’t put any weight on when we were in Melbourne and has put on almost half a kilo since we’ve been back (in about two weeks) which I thought was pretty good. Apparently it’s not good enough!
I planned to express lots today to try and get extra milk for when I go for surgery on Friday but Alyssa decided she wanted to feed every 90 minutes or so and I simply had nothing left to express. I reckon she is going through a growth spurt so I’ll be interested to see what Maureen says when I call her tomorrow.
Alyssa's Journey 