Temperature Spikes

Dylan got readmitted to E39 at the QMC on Wednesday afternoon after spiking a temperature whilst we were out. We were shopping in Farmfoods at the time and he had been complaining of tummy ache for a while so we checked his temperature.. it gradually went from 37.5 to 38 then to 39.5 which meant a call to the ward! We quickly abandoned our shopping, popped home for some clothes and his meds then drove over.

Despite sitting him in the car in just a t-shirt and pants with the air con on full blast and the windows all down he just got hotter, not helped by the heat outside either! By the time we arrived his temperature was well over 40 and at dangerous levels..

They took blood for cultures from his lines and did swabs. They then gave him IV paracetamol to help bring his temperature down quickly as he was starting to look awful, shaking and almost falling asleep. The doctor started him on a broad spectrum antibiotic as the results from the cultures would take up to 48 hours and that was a little too long to leave him in such a state in case it was anything serious! Thankfully he did not have a febrile seizure which we now know he is prone to, so that was a blessing at least..

He perked up with paracetamol but seemed to keep spiking the next day as it wore off and before the next lot was due but we managed to keep him comfortable and he seemed fairly happy in himself!

By yesterday morning he was running riot and not acting poorly at all! His consultant would have let us go home had he not spiked again when he woke up crying from a nightmare at 5am. So they all decided to hold and wait for the culture results to be safe, which were due to be reported by 6pm.

His nurse let me know last night that his results were all negative and he had no more temperature spikes over night. Prof. Grundy was on ward rounds this morning as it is his weekend on call.. he simply waved at us and said "off you go"!

It looks like his temperature was either down to something viral or just a reaction to his chemotherapy, either way antibiotics won't treat it. We also discussed Dylan's appointment with GOSH on August 25th and that he will be having a repeat CT scan now before we go. This makes me nervous but also excited to see if there has been any improvement.

The past few days/nights have been tricky. Mike can't really keep taking time off work so Bryce stayed at my parents and Logan stayed at the hospital with me. Luckily he was fairly settled once he did fall asleep at night, the biggest challenge was getting him to sleep and keeping him and Dylan both entertained in the day. I had to take Logan in the pushchair with me when I went to the toilet even!! It gives me a new appreciation for those with young babies in the hospital 24/7.. it really is exhausting!

Readmission

So after all the drama on Wednesday we got a phone call on Thursday afternoon just as the community nurse was about to do his chemotherapy stating that they had grown a bug in his blood cultures and that we needed to bring him in to the hospital for a weeks worth of IV antibiotics and not to give his chemo for now.

We quickly packed the suitcase and Mike took him in, thankfully he hadn't gone back to work yet or it would have been a lot more difficult! I stayed home with Bryce and Logan and then headed over Friday morning once Bryce was at school.

I am so proud of how well both the older boys handled it all.. Dylan was very grown up and went in very easily without upset simply saying "bye I go to the hospital get some medicine back soon" (until he got to the ward when he got a small bit tearful) and Bryce understood that it wasn't serious and that he would be home soon and he could see him at the weekend. Bryce missed him a bit at bedtime but on the whole took it in his stride whereas mummy was very tearful as it brought up all those memories of last time which to be truthful are still very fresh and raw.

We got to go out during the day yesterday and today as all his antibiotics are now down to just once a day. Whilst we were out today they arranged for the community nurse team to come out to give them at home and as he has been so well in himself since Friday we were allowed home!

We decided to take staying at the hospital in turns again the few nights we were in so we both got time with all the children. This won't be so easy next time as Mike does finally go back to work next week. It is really hard being away from any of our children whether it be leaving Dylan in the hospital with Daddy, or being at the hospital with him whilst Bryce and Logan are at home. It was nice to get a full night sleep Friday night though without feeding a newborn every few hours but of course it's also very hard to be away from a brand new baby that you are trying to bond with through all the stress and chaos!

As heartbreaking and difficult as it all is when these inevitable admissions happen, it all pales in comparison to the alternative of being without any of them such as we almost faced over Easter. I am thankful for every single second with all of them, be that in a hospital bed, wide awake at 4am stealing cuddles or discussing school and doing homework at 8am at the breakfast bar!!

Sickness & Fever

Dylan woke up in the early hours of the morning yesterday upset and very feverish. He had previously been unsettled all night, as he usually is on chemo week, so we went to bring him into our bedroom to calm him down but en route he threw up repeatedly on the landing carpet. His temperature was 38.8 which in the Oncology world means a trip to the hospital...

I rang the ward at the hospital first who advised me to take him in but to A&E as they were full. I expressed my concern over him having another febrile seizure like last time so they advised me to phone an ambulance if I was worried, so we did.

After lots of arguing with the operators over how Dylan's condition wasn't "life threatening" at that moment, despite how quickly he could deteriorate and the fact he has a medical alert on the system stating he needs an ambulance.. Mike ended up taking him via car, driving with him just in light pjs and the air con on and windows down.. the doctors weren't impressed at all that we'd had to drive him there!

On arrival at A&E his temperature was 38.3 so they moved him onto a ward and into a side room. The oncology ward was full so he went onto the respiratory ward instead. His temperature fluctuated all day with lows and highs up to 39.9!! Cultures were all taken but these take 48hrs for results so antibiotics were started and paracetamol was given to help keep him comfortable. There was no sign of any respiratory issues so the general consensus was that it was an infection, possible virus or just a chemo reaction so he was discharged shortly after 5pm with antibiotics and the advice to give regular paracetamol to keep him comfortable.

He still has a temperature at points today but seems okay in himself. He missed his chemo yesterday because of everything so will have an extra dose on Saturday this week. Hopefully today's dose doesn't affect him too much as he had a lovely settled night last night which he needs to fight off this bug..