Home sweet home

T+57

First full day at home. I woke to find Dan already downstairs preparing the 8am meds.
At 8am Herbie has 8 different meds (9 two days a week). Herbie, as usual , was out for the count and oblivious!
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When he did wake up you could tell that he was out to make the most of his first day at home! He spent quite a while perusing the breakfast selection with wide eyes. After 9 weeks having the same cereals on offer he just couldn’t choose! We also had to kick start his drinking. He still needs to drink a minimum of 1.5 litres each day. He met and exceeded this target easily in hospital but with more distractions and things to do at home it was harder to keep encouraging him. He drank 450mls quite quickly but then slowed up. He enjoyed having squash again. In GOSH the squash was made up with cooled boiled water and put in special bottles. Herbie said it tasted odd, despite it being the brand we always buy. Now we are back at home we still can’t use tap water for his squash. We had boiled and cooled a huge jug of water last night and it was in the fridge.
Other things we have to do post transplant include the fact that we must not use wooden spoons to make/serve his food or use wooden chopping blocks. To ensure we don’t use one accidently, we have hidden them.

The sun was shining and Herbie couldn’t wait to take his huge collection of Moshi’s out in the garden and play with the others.
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As he has had chemo & GVHD he needs good protection from the sun. We covered him in factor 50 sun cream and he wore long shorts and a long sleeved tshirt. Once the hat and shades were added he could go.
Life felt pretty normal! I took his four 1pm meds out to give him under the shade of the treehouse and he said his tummy hurt a little but soon he was back playing.

We had a visitor briefly with Moshi gifts. Shelley and some family and friends arrived with a package. It was so sweet of them. Perfect gifts and a very touching letter too.

Thank you Shelley
Thank you Shelley

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The post arrived and two more lovely gifts. Dr Lisa and Ethan & Emily sent a selection of fun things to do from Colorado. Thank you so much…we had your snow outside today!
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Then an envelope, from Kelly and her lovely family. Another very touching letter and vouchers for Huffkins in Witney.

So at this point I need to just mention friends. A few days ago I mentioned in my blog about the wonderful communities that have supported us, now let me just stand on my soap box about my friends. There are so many categories of friends, those I’ve known since I was little , school friends, work friends, friends I’ve made because I have taught their children, friends that I have made because we have something in common (having a baby at the same time, working in the same profession/school, having twins, losing weight, and most recently being in hospital with children undergoing transplant). How I became their friends has recently become irrelevant, the support, love, care and strength that they have given us as a family to get through the run up to and the actual transplant has been out of this world! I have been humbled by each kind word, comments left on this blog (sorry if you are still awaiting a reply, I will get there) , gesture or act of kindness, gifts, flowers, offers of help, etc etc.
Some very close friends have literally been there for us daily at home to help with lifts to and from school, clubs etc etc. I don’t need to name you, you know who you are. Thank you. To those who sent messages EVERY day, I am eternally grateful. Every morning I knew you would reply to my blog post or send me an encouraging text/message. The COSTA & Starbucks card that came and encouraged us to leave the confines of the hospital and spend time decluttering our minds ready to face the next phase. I truly believe these things, the post, the gifts, the letters, the messages, the visits, the support , are what got us through with a smile. The BBC camera man commented on that yesterday as we left, he congratulated us on coming through such an ordeal still in good humour. He should be congratulating our friends, scattered in every corner of the world, who follow our journey and help us with our bags along the way, keep us buoyant and reassure us that things will turn out ok. Our cheerleaders. Thank you!
Family…don’t be offended you have your very own post coming soon.

2pm, our community nurse, Sarah, arrived armed with tons of supplies. Sarah has literally been coming to our house for over a year, it was like welcoming an old friend back after a holiday.
The iv’s were given over an hour and although it wasn’t due we also had a dressing change as it was falling off.
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After she left Herbie headed to chill in his hammock. His head hurt and he was tired.
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He perked up and had dinner and at 6pm his fluid target had been reached , his 8 meds were given and he went for a bath. We are still using the oil and lashings of moisturiser as post GVHD Herb is rather dry.

Well the 11 pm meds were done whilst he slept. Tired now, time to sleep.
This journey is moving into the next phase, weekly trips to Gosh and a variety of other tests. I will still blog daily whilst I have things to report.
Take care all
Em

*for you blood result junkies! no results today and for the foreseeable future. How will we get through the day?…..

7 thoughts on “Home sweet home”

  1. Such great news to see Herbie home and you all back together! I have been sharing your blog with my Tom, he has been asking after Herbie and he is chuffed that he is out of hospital. Wow still lots of precautions to take- you are doing an amazing job!
    XKate

      1. Tom is much better thanks- it took a good two weeks though! I am keen now to chat to his immunologist when we are up in GOSH as he has missed quite a lot of school now this year. xx

  2. This has been so wonderful to read, and the photos of Herbie at home with his siblings so heartening. I hope you and Dan are adjusting to the new meds regime at home, it sounds like you are having to be super organised. xxxx

      1. I think we might have sent the last one too late, after you had already left GOSH….. ?

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