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Old Oct 6th, 2016, 11:50 AM   551
Bumblebee2408
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I've not posted photos for ages but I know I used to do it from my computer as it was sooo much easier.

As for us.... we pick our Keys up tomorrow for our new home. Can finally start getting sorted.

Lola how is Jenna 4.... these years have flown by haven't they? Thet do sound super cute if you work out how to send photos I'd love to see them xxx



 
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Old Oct 7th, 2016, 09:25 AM   552
lolalei3
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Great news on the house! Must be such a relief!
Well as for us we are in hospital again with Owen, been here since this morning and probably a few more days. He's had another bought of bronchiolitis and was struggling to breathe, his breathing has never really come good since last time he had it at 4 months old so this is a huge set back! poor little guy.
Hope Jack and Jess are all good and you can start planning for her to come home!



 
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Old Oct 9th, 2016, 12:58 PM   553
Bumblebee2408
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Awww poor Owen. Hope he's better soon for you. Bronchilitis is awful for them. Hoping he recovers better this time.

Hopefully we'll get settled soon xxx



 
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Old Oct 10th, 2016, 22:50 PM   554
lolalei3
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How do you manage your time with Jess in hospital?? I can't begin to imagine how you do it! You couldn't always have someone with her could you? I've been going home at night for a few hours sleep as I can't sleep here!



 
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Old Oct 14th, 2016, 18:20 PM   555
Bumblebee2408
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I'm lucky we have family to help wuth jack when I am with her. Whilst in hospital jess has to have 121 care they get a health care assistant in to sit with her and play while I'm not there. Sometimes I sleep especially around surgery dates.... some nights I go home and she has 121 nursing so honestly I just try my best. I'm sure you're doing a fantastic job 😘

It's hard whenever they are in. How is Owen?



 
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Old Oct 15th, 2016, 09:20 AM   556
lolalei3
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Wow that 121 care sounds like a life saver! So good that there is something like that so the kids aren't 'alone' in their rooms. Luckily Owie had his own room, the hospital we were at we're all private rooms thankfully! What a great service! I wonder if they have anything like that here in Australia. Oh yea family has been amazing taking Jenna for sleepovers when we needed them! Not sure we could have got through without them!

He's home now after an 8 day stay in hospital, first few days they had him on nasal gastric tube feeds but slowly weaned him off as he was able to take more from his bottle. He was on high flow oxygen most of the time but turned to low flow for last couple of days. Drs are now saying it may be due to 'floppy airway syndrome' or an obstruction like flap of skin, so when he gets a bad virus (bronchiolitis) his already compromised airways constrict further. We are going for some tests but to be honest I don't think they will operate on him even if they do find something wrong as they never touch kids this young unless critical. And if it is floppy airways I don't think there is much they can do. So we just have to wait till he grows out of it I guess!

You must be getting so excited, not long now till Jess can come home!! Have you moved into the new place yet? How is it?



 
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Old Oct 15th, 2016, 17:50 PM   557
Bumblebee2408
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OMG jess has a floppy airway...!but hers is serious hence the going blue and stopping breathing. That's why she hasaid a Tracheostomy in her airway.... in her case her problems called tracheomalacia if you want to look it up.

We did the high flow and low flow thing... now she just has oxygen through her Trachey she used to hate the nose masks with high and low flow.... we also tried cpap for a while which gives more pressures that was awful.

They did an op for jess to strengthen her airway called an aeortopexy.... basically it's where they wrap part of the aeorta of her heart around the airway then attach it to the sternum but that failed for jess n it took hospital 5 months to decide they would Deffo do it.

Sorry bombarding you with info now but a floppy airway can be quite scary. Although when jess was bad sleeping on her tummy used to help keep her airway open according to specialists. Not sure how much I believe that haha

Anyway sorry I'm rambling about things. Glad he's home now. Must feel great to have him back. As for home we have keys and are moving some bits in but until our carpets are in we don't want to get in properly we couldn't get settled. But once the carpets are in we're so excited to get sorted 😄



 
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Old Oct 18th, 2016, 09:10 AM   558
lolalei3
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Oh wow that is so strange both kids had the same issue! Who would've thought hey! I will def look up tracheomalacia as they are still not 100% sure where the problem lies. Do u think they will operate? As he has been hospitalised 3 times in 10 months now!



 
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Old Oct 26th, 2016, 02:28 AM   559
lolalei3
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So it's definitely in his lungs and not an upper airway issue. In hospital again, he just can't seem to shake these constant viruses and fevers which in turn make it hard for him to breathe. He's in a children's hospital this time so hopefully they figure out a better method of treatment!
How is Jess?



 
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Old Nov 1st, 2016, 19:31 PM   560
Bumblebee2408
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Aww Lola I feel for you. It totally stops your life when they're in hospital.

We're still up in the air. Carpets finally are coming next week along with our new Sofa woohoo. Can't wait for it to feel like a home.

Jess has a cold so is back on oxygen and feeling rubbish..... to be fair we're all made up with cold but making the best of it.

Jacks learnt a new trick how to climb trees he terrifies me he goes sooo High up I'm like don't go further I can't reach you 🙉😥

I hope opens feeling better too. Hopefully they won't need to operate but can find a good way to treat his issues. Hopefully if it's just oxygen requirement to help they can arrange for you to have some at home so when he's poorly you can monitor and use it. We have SAT's monitors for jess to keep an eye on her oxygen rates... Heart Rate etc as well as oxygen and all other medical kit she needs so it's doable

Keep me updated I'll try and post pop on as much as poss xx



 
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