By the end of the week following his chemo (Fri 20th May) Fintan was admitted to Stoke Mandeville Hospital with a high temperature; we assumed he would be back home after 2/3 days, but it actually took nearly 4 weeks to get him back home for good! Initial antibiotics did not have any effect and his temperature continued to spike; after about a week his antibiotics were changed and an anti-fungal drug added, but still his temperature spiked. GOSH, who were dictating his treatment, had stated he should continue on this cocktail of drugs for 10 days after his last temperature spike - as his temperature was spiking daily it felt like we would be there forever! Repeated blood cultures all came back negative, a chest X-ray, ECHO and CT Scan were all clear too.
After 2 weeks, as Fintan's temperature was not spiking as high, Stoke Mandeville allowed him home during the day. Although he still had a lunchtime visit from one of the community nurses for a 1.5 hour drug infusion and 'popped' to Wycombe Hospital at teatime for another 1.5 hour drug infusion, then back to Stoke Mandeville for the night for yet more infusions it was good to be able to spend some time at home.
Finally, 3 weeks after his admission Fintan was discharged from the hospital on Fri 10th June as his temperature had settled and no bacterial source of infection could be found. However, we only managed about 24 hours before he was re-admitted on the Saturday evening - with 'tracking' along his central line (redness on the surface of the skin following the route of his central line which is a sign of infection).
With his 4th birthday the following morning we were all very upset, but not Fintan who took it all his stride! A new cocktail of antibiotics were started and, as he did not have a temperature, the hospital allowed him home for his birthday on the Sunday morning. Sue (one of Stoke's community nurses who don't normally cover weekends) kindly administered Fintan's lunchtime drugs at home so that his afternoon birthday party could go ahead as planned!
Fintan had a fantastic birthday and loved his drum kit! It was hard having to return to the hospital in the evening, but as always Fintan was still smiling!
Birthday Boy!
GOSH finally came up with a 'plan' for the week commencing 14 June; continue with antibiotics (once a day administered by the community nurses at home) and as soon as a bed was available to remove the central line. His bed was held open at Stoke Mandeville, but we were able to remain at home until GOSH scheduled Fintan's day surgery on Thur 17 June. The line was successfully removed and Fintan is now a very happy boy!
We were at the Royal London Hospital this Wednesday (22 June) for an EUA and can report all was well. The consultants are happy with how his right eye has healed and his left eye is stable - we are hoping that things stay this way! Fintan's next EUA is scheduled for 6 weeks.
< Fintan and Oliver enjoying a DVD!
Post anaesthetic 'lunchbox'
