Overnight stay and more tubes (and I don’t mean the trains)

So Thursday morning came and after an early iv of Ambisome with the community nurses it was time for our first ‘overnighter’ at GOSH. Last year Dan and Lily spent a week there but myself, Herbie & Ru have only ever done outpatient appointments there.


We travelled by car and arrived attempting to locate our plans for the day, that we were informed had been left at the main reception along with details of our booking for the patient hotel. After a quick walk we were greeted with a very busy and cramped reception, whilst we waited in the queue, apart from the inevitable ‘ mummy, I need a wee!” , I suddenly heard my mobile ringing and to my amusement it was showing ‘Great Ormond Street ‘ as the caller! I had to step outside to get a good signal and left Dan in charge of the boys and obtaining the envelope of goodies from reception.

The call was very apologetic, there was a mix up, Rufus couldn’t have his HTA assessment as planned on Friday now and it would need rebooking next week. I was already feeling anxious about the two days ahead but this added to my stress, we had Rufus with us for two days now and he wasn’t needed! More annoyingly though it meant that our hospital free week prior to transplant would now have a visit to GOSH.  I  returned to Dan with the news only to see him looking highly confused at the main desk. Nothing for us there! No envelope, no details. The mobile rang again, the BBC were expecting us too! We went out again to look for the patient hotel which we knew was opposite, perhaps the paperwork was there? After looking , rather hurriedly, we couldn’t see it. Anxiety levels were now high! Thankfully, Catey & Hiral , who are filming us, came to the rescue and showed us where it was…however relief was short lived as the hotel couldn’t confirm we had a room even though we had just been told by the BMT team on the phone that we did! Argh!!!

Take a deep breath… That’s what we did and then headed to Fox Ward, one of the BMT wards to meet with an occupational therapist who was assessing Herbie’s development for a baseline pre BMT. Herbie enjoyed the tasks and did really well. No development issues, as suspected! During this our paperwork arrived and we breathed a sigh of relief!
We then met with Nikki, one of the inpatient BMT nurse specialists who talked about what we needed to bring, do etc during transplant. I will need hair up, no rings, bracelets or watch to be worn (although wedding ring allowed), clean clothes daily and clean pj’s every night. We talked about Dan finding a room during the first three weeks and what Herbie could bring with him. The inevitable hair loss , pre BMT haircut & other details.
After the meeting we headed off to feed the troops and then book in at Western House, the patient hotel. We were told we had adjoining rooms that slept two in each. This was not the case, another grumpy moment as we realised Dan would be sharing with Ru & I would share with Herbie. Just then the mobile rang again…GOSH again! It appeared that Herbie’s previous blood tests showed a clotting issue so they wanted another test before surgery. So we headed back to Safari Daycare for a blood test.image
After bloods were taken & a treat from the hospital treasure box ( moshi monsters of course ) we headed to Nando’s as a treat before heading back to the communal room in the patient hotel where Catey & Hiral came to film us. My first tears were recorded 😦
We finally got to bed, I didn’t sleep much, It doesn’t matter how many times you take a child to theatre , it’s still a worry.

On Friday we woke early, no breakfast as obviously Herbie was nil by mouth, but after speedily packing up we checked out and crossed the road to go back to the hospital. We were surprised to find that the temporary reception/entrance that we have used since we first attended GOSH and that we used only the night before was now closed and the proper one now open!
It was fabulous, all light, airy and very colourful!
Herbie was admitted to Robin Ward and prepped for surgery, he was first on the list. Once consents were signed we headed off to theatre, Herb in his gown and Dog Dog with his name label on too.
We said see you soon and Dan & Herbie went into the anaesthetic room, Catey filmed the procedure which will be strange if it hits the TV screens next year!
We took Ru for breakfast and expected a call in an hour and a half to go to recovery but the call came in less than an hour!
Herbie was a tad grumpy but ok until he saw the PEG in his tummy. It was a shock to him.
The PEG is there so that during transplant, if he becomes too unwell to eat or take oral meds , they can reach the stomach via this tube. It avoids having the tube in the nose which I know he would hate. He’s extremely scared of his PEG coming out, we have tried to explain to him that it is secure. He spent the day quite subdued.
We met Maria , the outpatient BMT nurse & James the dietician to discuss transplant. Rufus was a good boy in such a confined space but I took him out to look at the new virtual fish pond in the brand new reception and to play in the Walt Disney play area in the Lagoon Restaurant. He had a great time and was thrilled to see the Peter Pan statue unveiled once more.
Virtual pond
Herbie and I had to say goodnight to Ru & Daddy as they left us to overnight in our isolation room in Robin ward. They went home to the girls.
Herbie slept from early on and had a peaceful night.
I woke this morning, April 26th, my birthday! Herbie was the only family member with me! The nurses gave me card which was lovely.
Dan returned around 2.30pm & we finally escaped to return home at 5pm. I was totally amazed by the birthday love I found on returning home.
I climbed into bed with one thought, 10 days before the roller coaster starts it’s descent
x x

2 thoughts on “Overnight stay and more tubes (and I don’t mean the trains)”

  1. You didn’t need the added stress of that administrative mess up ! Al the professionals you describe sound absolutely lovely. We are all rooting for the Taylor family and I have no doubt we will see you on the BBC xxx

  2. Well that’s a birthday you won’t forget…… I hope you have done something nice to celebrate since. It sounds very difficult to stay calm in all that chaos and mix ups. We have a letter for Herbie from our Easter holidays if you want me to send it xxxx

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