While Elin Was In Hospital, We Had An Alice Day

本站添加: 2026-05-22

[00:00:00]How's it going there, my love?

[00:00:02]>> Really well.

[00:00:03]>> Excellent. So, you're making us lunch today? Yeah.

[00:00:06]>> Yep. You can help get it.

[00:00:08]>> Yeah. I just figured I'd start tidying up here a bit and make it easier to wash off cuz we don't have any wash up before I go back to your sister in hospital.

[00:00:18]>> Oh, it's filming.

[00:00:19]>> Yeah.

[00:00:21]>> Nice. Uh I've just washed my hair.

[00:00:23]That's why we're plopping it.

[00:00:24]>> Oh, the luxury of having a hospital bed in the house.

[00:00:28]I'm so comfy. Right. Sorry, Ellen. I've stolen your bed.

[00:00:33]In the vlog, it's the end of April and Elen has now spent three nights in hospital. In the real world, we're approaching the end of May and Elen has been home for 3 weeks. She's doing really well. And to pick up on that word I said a million times in the last vlog, which in the vloggy verse happened two days before this one. Do you follow me?

[00:00:57]Anyway, I believe I said the word clonedine about five million times in that vlog. As this vlog is happening, she she started cloned yesterday and I'm not mentioning it anymore in this vlog because this vlog is completely about Alice. That's the tricky thing. If you have more than one child, but one of them has really complex needs, right?

[00:01:19]You have one child in hospital, you have one child at home. the child at home.

[00:01:24]She also has heightened needs at a time like this. Alice is an extremely intelligent and extremely caring sister and she worries. She feels like something's off. Something that I think she might say in the future. She doesn't say it yet, but I'm pretty sure that as an adult, she will turn to me one day and say, "I always felt like if I couldn't see Ellen, I couldn't make sure she was safe." because Alice does get very very stressed out whenever Ellen's in hospital. So as a as her mom, I go out of my way to make sure that she feels a bit special when I have her and Elen's in hospital. So at this particular time, Elen was in our local hospital. Here it is practic Well, it is walking distance from mine and it's not quite walking distance from dad. And when she's in this hospital, we swap over roughly every 24 hours. We do one night on, one night off. When we swapped the day before, Alice had stayed with one of her best friends who also happens to live next doors to her dad, which is brilliant. So, I drove down there to pick her up, stayed and chatted for a bit, and then went home, had dinner, and we basically crashed out. Both Alice and I. Alice was tired and I was exhausted because it is very tiring having a child in hospital. And then we woke up the next morning, and yeah, as I say, it really was an Alice day. It was making sure that she felt cared for and looked after and special all day. We'd started the day with giving her hair a little bit of a trim and just shaping her fringe a little bit more. And she decided she wanted to vlog.

[00:02:52]>> I'm grating carrots and cucumber.

[00:02:55]>> Mhm. And what is it you want me to do this week?

[00:02:57]>> Boil some hot dogs.

[00:02:59]>> Yeah.

[00:02:59]>> Can I do them in the microwave?

[00:03:01]>> All I want is some yummy yummy uh hot dogs. So, just do it.

[00:03:05]>> Just do it. Or I can fry them.

[00:03:07]>> Fry them.

[00:03:10]I thought it's much. Are we having anything else than vegetables and hot dogs? I don't have any hot dog bread, but I do have fluffy bread.

[00:03:19]>> Oh, I thought you had hot dog bread.

[00:03:21]Fluffy bread then?

[00:03:22]>> Yeah. Should we give the fluffy bread a light toasting?

[00:03:26]>> Yeah.

[00:03:26]>> This is fluffy bread. Basically sliced brios. We were in the shop and Alice went, "Oh, do you know what I want? I want that fluffy bread." And I went, "The what?" She meant this.

[00:03:35]>> Okay, that's all I can lay off. Yeah, that's You've done great.

[00:03:40]>> What did you say?

[00:03:41]>> I said you've done great.

[00:03:43]>> Should I do another carrot >> if you want?

[00:03:45]>> See how much cucumber I >> Okay.

[00:03:48]>> Wait, am I going to grate the cucumber or am I going to do it here?

[00:03:52]>> It's up to you. I mean, what does the rat inside your chest hat tell you?

[00:03:58]>> Uh, apparently it's telling me that this doesn't work cuz I just tried it and it didn't work.

[00:04:02]>> Oh, >> I guess I'm going to bl it.

[00:04:04]>> Okay. Spray cucumber juice everywhere.

[00:04:07]>> Mhm. That's what happens.

[00:04:09]>> It's nice and cooling though.

[00:04:10]>> Yeah.

[00:04:11]>> Mommy, I like this. Like it's kind of like a fresh water. It >> It is. Smells really nice. Do you want anything more than ketchup and mayo?

[00:04:19]>> Crispy onions if you have it.

[00:04:21]>> I think I do.

[00:04:23]>> I like it.

[00:04:24]>> So, >> it looks like ginger pickles.

[00:04:27]>> Yes. Right. So, we're going to eat lunch and then we're going into town.

[00:04:30]>> Yeah.

[00:04:31]>> Oh, no. Before we go into town, I am washing up. So, this is what looks like ginger and pickles, but it's actually grated cucumber and carrots. And it's less vibrant and disgusting than it looks on camera. At least I think it it does. But anyways, yeah, I grated it.

[00:04:51]The grater that has a lot of different type of grating stuff in it. and got the hot dogs, the fluffy bread, which we're going to use for our hot dogs instead of normal hot dog bread because we don't have that. And yeah, going to eat lunch and then we're going to go to Dan. Not sure if you can see her, but Luca is out here. Yes, I am walking outside barefoot, but anyways, there she is.

[00:05:21]Luka, are you outside?

[00:05:23]You outside?

[00:05:26]Come in now.

[00:05:28]No. It's nice and toasty outside. Yeah.

[00:05:33]It's nice and warm out here.

[00:05:37]>> So, yeah. Say hello, Mommy.

[00:05:40]>> Hi.

[00:05:41]>> Oh, yeah.

[00:05:43]Oh, yeah. Boy.

[00:05:45]>> All right. Are you going to put some of that on each plate?

[00:05:47]>> Yes.

[00:05:48]>> Mhm.

[00:05:51]>> Beautiful. All right. So, we shall enjoy our lunch and then we're coming back.

[00:05:55]While all of this was going on here, Dad was sitting in hospital next to a sleeping alien. We had managed to get the seizures under control and she was catching up on all the sleep that she'd missed. She she'd been awake for well over two days and only really started sleeping again on the night that came after the last vlog.

[00:06:14]I don't know how I'm keeping all of this in my head. I don't actually. I have a notepad. As Elin got ill, she didn't sleep very well. I mean, she doesn't sleep very well when she's healthy.

[00:06:26]So, when she's heading down into a really poorly period, she really, really, really doesn't sleep, right?

[00:06:31]Yeah. She was tired and then she just started clonine. And Clonodine is very calming. It It does have a drowsy effect. And I also think it really did have a massive effect on getting that clonus under control so her little body could finally relax. Yeah. So she was chilling out in hospital and uh I suppose dad was rather bored and as I had now finally caught up with sleep myself. It wasn't excuse you it wasn't just the question of doing things with Alis at home but we decided to head into town because we needed to we we had some granny money burning a hole in our pocket. The idea was to try and find Alice a pair of trainers. I wanted to show her something that I had seen the day before that I thought might make her squeal a bit. And um did she squeal?

[00:07:18]You're going to have to see for yourself.

[00:07:21]>> Oh my god, that one is nearly the size of her. We're actually supposed to go into town and try and find some trainers for Alice. I'm taking her on a little bit of an extra walk because I saw ducklings down here yesterday. And I don't know if I'll see them again, but if I do, she'll really like it. But getting that child to move along the river is impossible because she's like, "Oh, look, a bird. Oh, another bird. Oh, another bird. Oh, something shiny."

[00:07:46]Fishes.

[00:07:48]See? Told you. They're right there. I know you can't see them cuz they're so small. But I'm going to see if we can get to a spot where she can see them.

[00:07:57]>> Honey, when we when we reach the rope, can I swing on it?

[00:08:01]>> We're not going to go that far, honey.

[00:08:02]Oh, >> I have actually spotted the thing I wanted to see you. You just need to get to a spot where you can see it. Spotted the thing I wanted to see you. Spotted the thing I wanted to show you. What's that?

[00:08:20]>> What have you seen?

[00:08:22]>> A duckling.

[00:08:26]>> That's what I wanted you to see.

[00:08:28]>> Oh, I just want to go down the ducklings.

[00:08:32]Basically, the other day, I think it was yesterday even, when I had the carer coming into Alen Hospital for a few hours, I decided to walk home rather than take the car home. And as I was walking down the river, I saw the ducklings. I'm like, "O, they're too cute." So, I had exactly the same reaction that Alice just did.

[00:08:59]>> They're grippy. They're easy to run in and they pass the jumping test.

[00:09:04]>> Okay. So, we could not find any good trainers in here, could we?

[00:09:08]>> No.

[00:09:08]>> But if we can't find trainers, we can find a pair of sandals instead. I like those.

[00:09:14]>> Me, too.

[00:09:15]>> Uh, you do need sandals for the summer, too. Are we getting them? I think the problem is that there's so many glittery things here as well. And obviously, I'm not going to let her buy high heels. We really wanted a pair of black trainers or mostly black trainers, but none of the ones we've seen are all that nice.

[00:09:31]What she really needs is school shoes, but she doesn't wear school shoes. They become uncomfortable too fast. And so I thought we'd compromise and go with black trainers cuz she can get away with that in school. But then they're just really dull black trainers.

[00:09:43]>> So I really like the I like the sturdy and they pass the jump test and they're easy to run in and they don't make my feet too hot. And she's immediately made a friend in the queue.

[00:09:55]She goes up to pay for shoes and what happens? She finds a dog.

[00:09:59]>> Yes, I'm bringing you present just in case.

[00:10:01]>> Yes, you are. Right. And suddenly we are packing both of us. So we got our lo a pair of sandals. Half success. It was meant to be trainers. You can't win them all. H. And then we've been mooching around charity shops and I found a little scar for three quid. So I'm quite happy with that. And now Alice, well when we were in the charity shop, my friend rang and what did she say, Alice?

[00:10:22]She said, "I like to come b paddle boarding with Ida, which is one of my friends."

[00:10:28]>> And Alice went, "No, don't make me ow.

[00:10:31]Oh, okay. Okay. Stop twisting my arm."

[00:10:34]So, she's going paddle boarding and I'm packing to go back into hospital and swap for dad.

[00:10:38]>> I said, "Yes, yes, yes, yes, yes."

[00:10:41]>> But you're bringing your mug mug >> mug mega mega >> mega mega. I am bringing Tantrini cuz Yell is ready for this now, which means that we are starting feeds. Fingers crossed she's going to be well enough soon. Oh, and there's S.

[00:10:58]>> That was quick.

[00:10:59]>> That was quick.

[00:11:00]>> Hello.

[00:11:01]>> Hello. That's it. She's gone. What do I need to bring? I do need my laptop because I do have editing to do. I have put sweets in there. I've put coffee stuff in there. toiletry bag and estrogen gel and toothbrush. Some more comfortable clothes to just lounge about in in hospital, aka trackies, rather than the jeans I'm wearing now. I think I am good to go, but I need to we first.

[00:11:29]The thing with Ellen being in hospital like this, it is an acute picture. You know, she has suddenly gotten very, very ill. It's not the first time we've seen it. I mean, as a matter of fact, we see this at least four times a year and have done ever since she was born. So, we're quite used to it. But while the exact detail of the seizures have changed quite a lot over the years, the the progression of these hospital stays is it it's it stays fairly similar. We have the immediate part when she just comes in when she is I mean nowadays she's not super ill because we we know the signs we know where we're headed and we take her in earlier. Obviously this particular time she was in rest by care so she got more sick than I want her to be before I take her into hospital. But it's getting her into hospital getting the port accessed making sure we have suction available because obviously the vomiting picture is quite severe and she is an aspiration risk. So, we want to prevent aspiration pneumonia from happening. Uh, oxygen if she needs it.

[00:12:33]When I took her in, she didn't actually need oxygen. It wasn't until she had that really, really big seizure that you saw in the last blog. Uh, and I mean, that was nasty. But yeah, IV access, oxygen, they always put in IV antibiotics because they treat her as though she's having sepsis. They're assuming sepsis because Elen can't tell us how she's feeling.

[00:12:58]because she has the central line and there's always a risk on infection in that central line because her skin is mottled because she is less responsive.

[00:13:06]It's like, okay, well, there are sepsis symptoms, so we're putting in broadspectctrum IV antibiotics as a matter of cause. I I think that girl has now had seven different lots of antibiotics this year alone, which is extreme, but what can you do? She's she's due a few more because she's having surgery soon. I want intravenous antiimetics. So, onetron medicine that supposedly should help her stop vomiting. And we give that introvenously as well because, you know, nothing stays down. IV paracetamol so we get pain relief into her without her losing that as well and then IV fluids. We usually head down the route of much stronger seizure medications. We did this time we had to give her buckladazzylam to stop that big distonic seizure she had. We set in clobazam twice a day for several days running when she's like this as well because if she isn't ceasing when she comes in, she's going to be ceasing in a few hours. And then we have to wait out the vomiting that has to stop and that takes a few days and she has to start sleeping and get some rest and that takes a few days and they tend to go kind of hand inhand those two. You know, as the sleep sets in, the vomiting gets better. As the vomiting gets better, the sleep sets in. It's a little bit hard to say which is which. Then when the vomiting has stopped, we start feeling more confident that her stomach has now started working again. It's not just sitting there doing nothing. things are actually moving through and we start what's called a fluid trial or a fluid challenge when we give her direlite through her tube straight into her stomach and see if she tolerates that.

[00:14:40]As she tolerates more and more direlite, we can reduce the amount of IV fluids we're giving her. And then once we're up to all of her fluids being dire, we start introducing calories. And then once she's tolerating calories, she's good to go home. Okay? And it feels like that is a very quick thing. Actually, it is a very quick thing. you know, she goes downhill very quick. So, she's in school and then a few hours later she's in hospital. Like, that's how quickly she goes down. And then she's really poorly in hospital. We can start giving her direct light. Her stomach is tolerating it. And then a day later, she's on calories and the day after that she's discharged and she's home. So, it's like and then it stays down here and then a little bit better and then boom, and we're off. And of course, we want her home. We always want her home.

[00:15:26]She's going to recover better at home and we are more than capable of getting her on to actual food in the home. She doesn't need to stay in hospital until she's tolerating proper feeds and not just formula.

[00:15:39]To be perfectly honest, once she tolerates everything through her stomach, she doesn't even need to stay in hospital until she tolerates full fluid maintenance. We can do that at home as well. But they quite like to see that she definitely tolerates fluid maintenance before they allow her to go home. But anyway, yes, when she starts improving, we can start giving her darlite and then move on to giving her feeds and it's onwards and upwards from that there. So that's what I headed into hospital to do. I brought the it's called pepisorb or tentrini. What is it called? Tentrini. I think I I brought a peptide feed with me in in order to start feeds. And Alice had a whale of a time paddle boarding and river swimming in April. I mean, that weekend was insanely warm. Yeah, she had a great time.

[00:16:30]>> One, two, three.

[00:16:36]Yay.