I wasn't prepared for moving up to Bear Ward. A Registrar walked in to Martha's bedspace to retrieve her folder at 4pm on Saturday afternoon, Mark heard our nurse ask her to be discreet because she hasn't told us yet. She walked over to us, stroked my hair and broke the news that Martha would be moving up before the end of her shift.
Although I know Martha is no longer an ITU patient anymore, it's leaving the security of 1:1 that's daunting.Martha hasn't come to the ward yet, she's in High Dependency.
To "celebrate" the fact Martha came out of Intensive Care, Mark took me out to dinner at Burger & Shake, which is a lovely little eatery near the Brunswick Centre. We weren't away long and when we got back Martha was wide awake. I could tell just by looking at her that she wasn't well.
She looked as though she had a mouthful of saliva that she couldn't swallow and she was panicking. I saw her wretch, then there was Vomit. It's a good job Mark had stayed because all I could do was run out of the bay.
When I walked back in there was a Doctor with her, he listened to her chest and confirmed that she hadn't aspirated. But even so, I wasn't happy that she had vomited in the first place. Me and Mark were convinced that she had lost the ability swallow. But then the more we thought about it we realised that she could suck her dummy no problem and could swallow any saliva she created then - so she can't have lost the ability to swallow.
Sunday passed by rather uneventfully. Mark caught the 19:08 train home and I was back at the Hospital before half seven. Martha was asleep so I retreated to the parents room to eat some dinner and make the nightly update calls. She was awake when I went back in to see her. I played with her teddies with her, spoke in a silly voice to make her smile, changed a few nappies and got her to sleep again.
I was nervous coming back on to the ward on Monday morning, if she'd had a bad night I would have to deal with it myself - something I am not emotionally ready for. But she was having her bedding changed when I got it, wide awake with a beaming smile.
Once she fell asleep I left to get myself some breakfast. She was awake staring at her TV when I got back, but after a while she became bored and didn't know what to do with herself. I asked the nurse to help me get her out so I could cuddle her, just to see if that would help settle her.
It worked, after a while she fell asleep in my arms for almost an hour - something she hasn't done in almost 8 weeks. But as I waited for the nurse to come and help me put Martha back in her cot - she started to wretch. She was going to be sick in my arms. I panicked - I could feel my heart rate rise - this was really happening and I was on my own.
We paused her feed and put her back on her bed, even aspirated 20ml of air from her tummy. But no less than 10 minutes later she did it again, so they removed the entire contents of her stomach. I was almost a wreck, but she fell asleep quite quickly afterwards so I relaxed seeing how quickly she recovered.
The Consultant came to check her over and it was decided to take Martha right down to 50% feeds and 50% IV fluids. She was given an ECHO. The Consultant informed us there were no new issues found; she still has a residual VSD with 2ml per second of blood shunting through, her Left Ventricle is still dilated but he only wants to monitor this for now. The Aortic Arch Repairs both look great. He also mentioned that her Liver was distended because Martha wasn't peeing much so it was retaining a lot of fluid, they'd put her back on IV Furosemide to try to combat this - but the size of her Liver wouldn't make her feel great either. But they were putting the vomiting down to Reflux and optimising the Domperidone and adding Gaviscon to the Monogen.
Martha Grace was on her best behaviour for the rest of the day. When we left at Midnight on Monday she was fast asleep and was due her Morphine and Chlonodine. But I was still nervous coming back in this morning and as we approached her cot I could see the Nurse sitting her up - I felt my legs almost give way beneath me, was she vomiting again. But she wasn't - the nurse was just trying to move her about a bit.
Martha had a good night and had longer blocks of sleep, so she was obviously happy. The plan for today is to have Martha out for cuddles so that she is mobile, the last thing we want is for her to get Pneumonia. They are going to titrate her feeds and IV fluids slowly. The Speech and Language Therapist is meant to pay her a visit to check out her swallowing and the Morphine is being reduced again.
I've just had a nervous 5 minutes while the nurse gave Martha a new NG tube because no one was sure how long she'd had hers in for. But Pie has just popped her head around the door to the parents room to tell us it was all done and that Martha was fine.
In the grand scheme of things - this "Reflux" is relatively small in comparison to what she has come through so far.