A change in direction


It will be obvious that I haven’t been blogging for a few days. Sadly it’s not due to having nothing to blog about but to do with access to internet.

Friday (T+70) came and Herbie was clearly suffering from a water infection or cystitis and it wasn’t fun for us at all. When our community nurse arrived we discussed it and we chatted to the BMT nurse at GOSH who said that they would send a prescription to the JR for a medicine to help but that the main thing to do was to drink the 3 litres! This was going to prove tricky as Herbie decided he would NOT drink the drinks we had at home.

Later on Friday afternoon the phone rang and it was GOSH again, a change of plan after discussion with the BMT doctors. They wanted Herbie in hospital to have iv fluids to flush the virus out ASAP. This meant going to our local, The John Radcliffe, and were to wait for a call from them with directions on which ward to go to once a cubicle/room was allocated.

For some reason the news came like a sledge hammer. Going back in to hospital seemed like such a backwards step, despite knowing this was always a possibility. 48 hours hydration, it shouldn’t be more than that was the info from GOSH but from experience I know that hospital stays never quite work out to the length you are advised.
I felt angry, we had managed two weeks…TWO WEEKS! It just seemed so unfair , although I knew it was medically the right thing to do.
I had to break the news to Herbie…he sobbed, yelled and ran to his room shouting “I’m not going …I’m not going. I just did 9 weeks! I hate Great Ormond Street and I hate the JR. My heart was breaking for him, I knew how I felt and it wasn’t me that got prodded and poked! I left him to calm down in his room and spotted Lily crying quietly in her room. This admission was going to affect us all.

We travelled in silence to the JR. Herbie slept and when he woke he was still not impressed. The all to familiar car park, lifts and wards of the children’s hospital brought back so many memories of previous stays. I kept telling myself it’s just 48 hours, he’s not actually unwell in himself. Let’s get through this blip.

We were back on Tom’s Ward, where both Lily and Herbie had recovered from their lung biopsies, where Herbie had stayed for two of the three operations to remove the nasty lymph. We knew the ward, the staff and at least that helped. They remembered Herbie too. We had to go in our own room due to the immune system still being so new. Bloods were taken and Shelley Segal one of our favourite consultants arrived. She is the consultant who met Dan and Herbie from the ambulance back on Mother’s Day 2010, when we were losing him to meningitis. We always feel comforted when she arrives. She came with a new Foundation Doctor called Liam who was a bundle of energy and instantly took a liking to Herbie.
A plan was hatched, iv fluids were ordered and strict input/output monitoring began.
The room was one of the larger ones but without a bathroom which meant a walk across the corridor. I felt anxious about it but reminded myself that he wasn’t neutropenic and so he should be ok.
The hyper hydration commenced and Herbie was relatively calm by now.

Was a day of drinking and monitoring drinking, it was pretty boring and we were all keen to go home. Thankfully the fluid was doing the trick, but as it did in GOSH, Herbie became positive, meaning he had more water in than had come out!
Out came the frusemide to encourage more output!
Bloods came back showing both WCC, NeUtrophils, lymphocytes etc and HB all looking good but platelets on the low side. They had been 175 but were now in the 70’s. Despite GOSH giving a lower limit to transfuse Shelley asked for it anyway as she said it was almost a given that he would need them tomorrow. First platelet transfusion since June, again, seemed like a step backwards.
Liam came in to stake his claim on most favourite doctor but ended up having a play fight!

Play fighting with Dr Liam
Play fighting with Dr Liam

Herbie also needed an ultrasound of his bladder but this was slightly disastrous as nobody mentioned him needing a full bladder! We also had to go to A&E to have it done as it was the weekend and we were in a corridor waiting, I was so scared another child may pop round.

Waiting in a corridor and NOT amused!
Waiting in a corridor and NOT amused!

Another day of not much happening. The drinks continued in and out and things improved, the scan showed no signs of deterioration. The pain was subsiding for him and we were told, if things continued well he would go home on Monday.



Home time! Herbie had stayed up until almost 1am and slept soundly until almost 12.30pm! Not great for the fluid intake. He kept grizzling that he wanted to go home now. We needed a pump to administer iv hydration over night and it was arranged for it to come to our house the next day. We didn’t leave GOSH with one, most people did, so we needed training. That was all sorted but the community nurse came in to tell us and show us the pump and said that Shelley Segal wanted to finalise arrangements for the pump so we would go home Tuesday.
Both Herbie and I couldn’t hide our bitter disappointment. Herbie jumped on the desk in the room in a rage announcing “I don’t care if she saved my life, I don’t like Dr Segal!”
The community nurses ran off to beg her to reconsider and their pleading worked. Everything was packed up, notes written, just exit obs and some TTO’s to wait for. So we all calmed down and waited.
An hour before the meds were ready, I noticed Herbie’s breathing was faster and shallower. A sure sign of a fever. I asked Teresa the nurse in charge of our care to check him.
38.2, I can’t begin to tell you how devastated I was to watch it pop up on the thermometer!
This meant an hour of waiting, no calpol, then retest.
It was obvious he was still feverish an hour later so we had to abandon hopes of home and start a cocktail of iv’s.
Another kick in the teeth and tears before bedtime, mine and Herbie’s .


Another spike in the night and he slept, noisily.
He didn’t wake much this morning choosing to lay huddled up and hot.
I wasn’t overly impressed by the doctor entering the room noisily at 7.30am and turning all the lights on!
Ultrasound and chest X-rays revealed nothing


As per protocol he needs to stay in.
He woke after the ultrasound and seemed to perk up.
Liam came and announced that he knew he was Herbie’s fave doctor and he had a poster to prove it.
Luckily I went home tonight for a brief time with the others.
He had spiked again….
Hopefully they will get this sorted.
Please keep him in yr thoughts.

13 thoughts on “A change in direction”

  1. Sending love and positive get well wishes so Herbie gets back home soon. It is so hard for you and your family, I know that feeling in the pit of your stomach of disappointment and helplessness for the little man, especially when it comes out of the blue. Tom is also back in hospital, the Eve before we planned to leave for Camp Bestival. Stay strong cariad! X

    1. Oh Kate I’m so sorry to hear Tom is back in hospital. I hope it’s a short stay. Is Camp Bestival a definite no no? Much love, stay strong yourselves xxx

      1. They have let Tom out on oral meds and our promise to be vigilant. He is fine in himself and chuffed we can go! Camp Bestival here we come! Xx

  2. Thoughts and prayers are with you all, hope Herbie gets home soon. Verity sends get better wishes.

  3. We were in JR Hospital when James was diagnosed with his PID – Shelley Segal gave broke the news to us – she was so lovely and sensitive – I’ll never forget her. It brought back a flood of emotions and memories when we saw her name in your blog. We’re hoping and praying this fever will quickly pass and Herbie can go home again. We feel so much for you guys – such a emotional roller coaster 😦 Try and focus on the bigger picture – you’ve come so far, and you can look ahead to a fantastic, healthy future for Herbie. xxx

  4. I was told about this blog by the play specialists (Sam and Grace) – such a wonderful thing you are doing and it will be superb for Herb to read when he is older!

    Very privileged to have got a mention in this and I must say it is true – I really do enjoy finding any excuse I can find to go up to Tom’s ward and see him! Brightens up my day.

    The over-energetic Dr, Liam 🙂

    P.S. We will have to get a photo of me and him for here (minus the inevitable raspberry!)

    1. Aww, thank you Dr Liam! You have really helped keep him on his toes and I know, despite a plethora of raspberries, he totally enjoys the banter! I am shocked at how many people have read this blog but also all of the lovely things people have said about my Small when they know him. Keep being the over-energetic (Shelley’s words not mine but I agree!) Dr…it’s a fabulous tonic!

      1. No worries! He really is a special little guy. I’ve showed all my friends the blog this evening – he has a lot more fans! See you tomorrow.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s