Tag Archives: HCA

Drink up, eat up…

T+18 was here and with it the milestone of four weeks in isolation for  Herbie at Great Ormond Street. I remember when I was first told that he would be in hospital for a minimum of 8 weeks I just couldn’t comprehend it. Now we are halfway through those 8 weeks already! Of course we know that the figure they gave is a guideline, it could be more but we have managed the first four and honestly it has been ok!

When I woke this morning to the sound of a pump alarming. Just for a moment I was surprised that I was back at GOSH. I was honestly thinking “why am I here?” Then of course reality dawned, I looked at the time, saw it was early, saw Herbie was asleep and decided to try to sleep more too. I was rather unsuccessful as about 10 minutes later Kitty Face Timed us!
Herbie was obviously sleepy from his late night last night so I let him sleep a bit longer whilst I showered. It’s nice to get some of my things out of the way before he wakes so shower, new clothes and strip my bed down and wipe down the mattress are all ticked off before his eyes open!

When he finally woke he asked for breakfast, coco pops and milk please. I headed to the BMT kitchen, got his and then my breakfast (from a different kitchen) and returned to find him still looking sleepy. I weighed him and measured his girth as we do every morning and then let him eat.
He’s been having the milk feed over night for a few days and water boluses to top him up and this has left him with a runny tummy which has upset him. I explained that if he ate and drank more he might not need the extra feeds. A bowl of coco pops and milk went down a treat. He was still tired but keen to get in the bath when Helen, the hospital school teacher arrived, an hour earlier than usual. He gave me the “Herbie scowl” when I told her that would be fine. He demanded I dressed him before I left, which was a reasonable request!

I headed out into rainy London and found ancosy armchair in Costa to pass the time, stopping briefly at a stationers on the way for more lovely white board markers to pimp my white board!

I returned an hour later expecting to find Helen in the ante room just leaving but instead I found Jo, his nurse for the day , and Rose the HCA busy doing a full set of obs on him and Helen long gone. Turns out he had said he felt unwell so Helen had alerted the nurses and then packed up. As Jo explained what had happened she said ‘so we came to do a full set of obs but everything is perfect.” It was then I noticed Herbie giggling!

Turns out he wanted a bath and me not to go. We ran the bath and he jumped in and relaxed. I stripped and remade his bed, washed him, moisturised and then dressed him in new clothes.
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The doctors came in, Olga was pleased to see him and said that he was doing well. Apparently they have finally got a positive culture from the Hickman Line which showed that was the cause of the fevers. She said CRP was still coming down and they were happy it was under control. She also said that he would have more GC-SF tonight to try to keep the Neutrophils above 1 until the CRP was back to normal. Apparently our first bloods for engraft had been taken, she said they wouldn’t be back for a few days at least and that we were not to be disappointed if we did not have 100% engraft as it didn’t mean it wasn’t working. Finally , Olga said that they would begin to replace some iv’s with their oral counterparts, very slowly but in readiness for when you go home!

Lunch arrived, he ate well and was also making good progress with his drinking.
After his sandwich he fell asleep again and stayed that way for almost 3 hours. After the chat with Olga, the doctor, I was keen to see what the blood results were. We had hoped to see them rise a little today, especially now he would have GC-SF as a boost later this evening.

HB 88 (rising by itself!)
WCC 1.16 (rising!)
Neutrophils 0.73 (not above one but rising BEFORE GC -SF)
Lymphocytes 0.14
Platelets 42

All looking very promising!

The postman arrived, much to Herbie’s excitement!
He was thrilled to find, not only a letter from his letter writing friend Hope all about her birthday, but a wonderful hat , made with London themed fabric and some chocolate bars and sea creature pictures that we stuck on the window. Thank you Hope and thank you Tanya. The hat was so apt as Herbie loves to play a game that he invented called “‘ello Guvnor” when in London which is along the lines of ‘yellow car’ but involves shouting “Ello Guvnor” every time you see a London black cab or “yellow Guvnor ” if it’s a yellow one!
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He was also thrilled to receive a Moshi Monster school set from Linz, Richard, Sophia and Louis (and I had some yummy chocolate and some lovely messages from our class)! Thanks Guys xxx
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Postcards came from Auntie Lucy, Uncle Joffy & cousins Jude and Charlie from Croyde and also from Toby and Lucy a fabulous postcard of Ben Nevis. Both now proudly displayed on the wall alongside more correspondence from Grandma’s dog Flossy!
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The fab news is that Herbilicious managed to drink to his target today and eat very well too so no water bolus or night milk feed required tonight. Yippee!

Herbie drifted off to sleep after telling myself and his nurse for the evening ,Hayley, to stop chatting. Hayley confirmed for me that the infection that caused the fevers was found on May 30th in the white lumen (kenicky) of his Hickman Line.

So the board is all written ready for tomorrow, Day T+19 is upon us, please let the good days continue!image

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The case of the missing bed…

We have nothing but admiration and praise for the NHS and the amazing care and support we have had locally and from London. So the following story is not a moan or a whine, it’s just an account of what happened yesterday and we thought it was an adventure and typical of something run of the mill turning into something out of the ordinary which pretty much sums up this whole journey.

Yesterday Herbie had surgery on his neck to remove another (and hopefully the last) abscess on his lymph. It was all organised on Friday, all planned and sorted and straightforward. When we arrived at the hospital at 7.15am the ward seemed surprised to see us and asked us to wait. When we were taken into TDA we noticed Herb’s initials on the board but no other details. Everyone else had consultant, surgery list, ward etc.  As the first hours passed we watched the buzz of the busy TDA  (Theatre day admissions I think that stands for) as surgeons and anaesthetists hurried around carrying pink case notes and yellow consent forms that needed signing. We witnessed the anxiety of parents waiting for the moment when their child or baby had to go to theatre, nurses applying Ametop or Emla cream to small hands and wrapping them with the cling film and bandage so that the room became filled with mini boxers! Herbie was not amongst these, his PICC line means that anesthesia can be administered through the line rather than a cannula. Play specialists with beaming smiles carrying piles of ‘Where’s Wally?’books to distract small people from the insertion of needles to place cannulas, a plethora of iPads and ipad minis being charged to keep the boredom of the wait at bay.

Herbie , unlike the others had a different stream of visitors, first the usual weight, temperature check by the HCA, then the anaesthetist arrived but confessed to being unable to locate his notes, then a member of our consultant team arrived bearing news from a previous biopsy (all fine) followed closely by two of our lovely Community nurses who had just come to see what the plan was for the day & say hi! The surgeons came and told us we were second on the emergency theatre list and they would call him soon. Juliette, Herbie’s favourite hospital school teacher came in carrying a pot of felt tips, a superhero story and a camera and superhero outline on a sheet of A4. She had a quick catch up with him before reading him a story and taking his picture to print out to add to a superhero body he needed to colour in.
A TA from the hospital school also popped in to say hi and the community nurse popped back. The play specialist came for a chat and checked Herbie was ok about the pre op procedures, which he was.

During this time the other patients were changed into gowns, cannulas inserted and walked or carried by parents off to theatre and later their parents returned to TDA anxiously awaiting the return of their precious children from the surgeons knives. Hair was twisted, hands clenched, tears mopped up by scrunched up fistfuls of tissues. Then it was our turn. Herbie dons the gown, refuses to remove his jeans but walks happily down the corridor to theatre, he knows the drill, he isn’t scared now and both Dan and I manage this part much more easily than we used to. Kisses and hand squeezes take place and the doors to the anaesthetic room close on our sleeping boy…we head to the League of Friends cafe to get a drink and try to pass the time as quickly as we can. It’s midday exactly, thankfully he’s not been made to wait long this time.

At 12.30pm I buy our second cup of tea, we reckon on another half an hour at least based on previous surgery times. As I sip from the mug of tea I survey the hospital, bustling and busy. I spy the patients, released by their wards for respite in a cup of something warm from Costa. I spy the HCA from TDA, she’s looking in the Costa below for someone , I watched her flitting quickly from place to place, ‘maybe she’s looking for us?’ I comment to Dan. We decide to return to TDA anyway and wait there.

As we enter the doorway to Robins ward we see the HCA, “oh I’ve been looking for you two” she remarks smiling (a knot in my stomach…she’s smiling but she is looking for us, why?) , “he’s all done and he’s awake, we need to get him”. We grab our belongings from the TDA and head towards theatre. Dan asks me “shall we leave Juliette’s felt tips in Tom’s Ward when we get there? ” “you won’t be going to Tom’s ” the HCA comments. My mind spirals into a million questions and thoughts in that split second “why not?, what’s happened? Is he going to PICU? PHDU? What’s gone wrong?” As these questions swim around my head she continues “we are having trouble locating a bed so he’s going to Kamran’s ward…some parents worry when we say that (it’s the specialist children’s cancer ward)…there’s a bed free there.” The questions stop, I have no problem going to Kamran’s and we enter the ward, the HCA goes to get a nurse and we wait by his bed space. On her return she tells us we can’t have the bed after all, Herbie has TB which means he can’t stay with Kamran’s patients. Herbie doesn’t have TB but I’m not going to argue that point here and now, they have seriously ill children who need protected and I understand that. The nurse offers to take us to Herbie , who is awake but being kept in theatre. They won’t even send him to recovery despite him not actually being contagious.
Theatre snoozes
A rather grumpy boy greets us but after a rant and some calpol he snoozes whilst we wait to be allocated a bed on a ward. I look at the vast machinery, the cleanliness and watch the monitor as it beeps rhythmically telling us all that Herbie’s heart rate and oxygen saturations post surgery are not a concern. It’s 1.15pm
Candy crush addiction
We pass the time in the quiet white theatre playing Candy crush! Still no room allocated at 2.15pm. Herbie wakes again and asks for a wee, water, egg roll and to get dressed in that order. We sort it all.
Post surgery munchies

Ready to leave theatre
Finally he has a room and he can go, the nurse from Bellhouse Drayson looks very surprised to see him dressed and eating and off of the theatre trolley. We go to his room at 3.15pm and have visits by our community nurses and ID team consultants. Our lovely CN administers his ambisome iv and at 5.15 we head home! The case of the missing bed never really solved but hey if it had been this blog entry would have been a whole lot shorter and the day a whole lot less interesting!
Happy bunny back home