Day 339

When I came in to hospital last night I was preparing myself for a tough weekend with a sick little bub. I still got my tough weekend, but not for the expected reasons.

Ellie had her high flow increased to 6 litres, which is a bit of a blow to our hopes of having her home soon (as she could’t handle a common cold without extra support), but it also meant she is much brighter and happier. In fact, despite the rivers of mucus, Ellie is as bright, happy and playful as I have ever seen her. She really is such a joy and brings so much light into this world.

Today, however, was still particularly difficult because we have had to move wards unexpectedly. One of our fears of having to move rooms was recently abated when we were told we could keep the isolation room for social reasons (mainly so Hannah can be with her sister). That decision was trumped today, when a patient needed to come from emergency and had a particular need that required them to be in Ellie’s ward. Because Ellie is currently sick she could not move out to the normal ward rooms, which meant she needed to be taken to not just a new room, but  a whole new ward, 2 floors up from her current one.

Firstly, it was a mammoth task. There were 9 full loads of ‘stuff’ to take up, it is amazing how much you can accumulate over 11 months. Secondly, Ellie had to be taken up which is always an adventure in itself. We ended up giving up on the portable breathing tanks and Ellie just had some time off (she hasn’t been having this recently because of her cold). It was quite a stressful situation as it all happened very quickly, but Ellie seemed to take it all in her stride.

Apart from the huge effort, there are more difficult parts to leaving the ward. We have developed some really good relationships with the nurses down there, and it went a long way to making the hospital feel like a home. Now we have to start again. On top of this, Deb and I felt like C1south was Ellie’s final leg of the race, and we were working towards moving from there to our real home, but it is not to be.

There are also some immediate difficulties with the new ward. We are a long way from the nurses desks, so far that her alarms will not be heard. Our previous luxuries of ducking out for some fresh air while Ellie slept, look very unlikely in this situation. There were also two afternoons where Ellie would stay under the watchful eye of the nurses desk, while Deb and I crossed over for hospital shifts. We will also have to rethink how we do that.

There is some talk of moving her back down when they have room, but I fear this is the wish of the nurses and not necessarily possible for management.

All in all, it has been a difficult finish to a very trying week. Deb is currently at home with sick kids as she tries to recover from a shocker week in the hospital with the girls.

This all probably sounds very dreary, so I will finish with a few things to keep it in perspective:

  • We have four amazing, beautiful, bright, loving children
  • We will one day have them all home and will appreciate every minute of it
  • We have the rest of our lives to enjoy our beautiful twin girls who were not meant to be around at all.

Thanks as always to those who continue to rally around us in this story. It started off quite dramatic and action packed, but you have all been so faithful through these recent repetitive and tedious chapters.

*Matt

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Ellie reminding me of how to have fun despite the struggles.

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6 thoughts on “Day 339

  1. Reading your story today made me feel down knowing how hard it must be for you and Deb, than came that beautiful smile on Ellie’s face, looking at her it’s like she is saying “dad get over it I am happy with my move ” she is just too young to know the stress that parents go through, hang in there she will be home before you know it. 😇😇

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  2. I felt very sad for all of you guys, Matt sounds like a pretty eventful day, then you put the beautiful picture of Ellie with that wonderful smile. Deb hope the other 3 start kids feel better soon. Your whole family are amazing and to think you have been doing it all for nearly a year, you all deserve a break and hopefully once ellie comes home you can get back to some normality. Love and prayers are with you all xoxo

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  3. Maybe it’ll be one of those ‘a change is as good as a holiday’ moments in this journey, Matt. At least, I hope so. Big love to you and Deb, I still read your blog every day and send Ellie all the going home thoughts I can xxxx

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  4. OK Matt, for starters trust me when I say that we your readers would rather have “repetitive and tedious” over “dramatic and action packed” any day! Besides, nothing about the Humphreys story is boring – enthralling is closer to the mark…
    It totally sucks that you had to move today and in such a rush at that. You and Deb have been masterful as Ellie’s greatest advocate, so I’m sure that if you have concerns about things like distance from nurse’s station, you’ll be able to clearly and eloquently express them.
    I do recall how stressful it seemed for you all in the move from NICU to CICU – things can have a way of working themselves out. As for forming new relationships (quickly) – that’s a gimme – all the staff in that hospital fall in love with you guys immediately – how could they not???
    Get some rest and to all of you (the boys are sick now too?) – Get well soon!! xoxo

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    • Nate thought he was missing out so found a cold from somewhere and very nicely shared with Levi. Lots of sniffing and sneezing going on around here today.
      Everyone was advocating for Ellie today. I believe the manager of the hospital was even rung, despite them having weekends off. We are only allowed to stay in our current ward while she is infectious. Then we will move again.

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