Another week has whizzed by with only a few notable occurrences , which is good as most of them have been positive.
On Thursday Herbie returned to school for the first time since November 15th 2013. It was almost like Christmas Eve in our house on Wednesday evening. The uniform was laid out for him just like the other 3, packed lunch made, book bag packed and a fruit snack selected. Herbie was so excited and insisted we made chocolate nests with mini eggs for all of his class to “make sure they don’t forget me” . I couldn’t believe that my big worry of him losing his place in his social group was his too.
Herbie was up bright and early on Thursday and dressed in a flash…it was so wonderful to see him so happy and eager and to watch the excitement of his class as he arrived in the line!
When I collected him at 1pm I expected him to be shattered but he was still buzzing and full of energy until his head hit the pillow at 7pm! On Facebook that evening I felt emotional as friends left messages such as
(I walk through the door). “Mummy I have good news Herbie is back at school!” (Bless) x
Like Louise. Off her own back I got Isla saying ” Mummy guess what was really exciting today…Herbie came back to school” She then went on to tell me about some medicine in his tummy and how they were jumping around together or something. I think they have all missed him.
Over the days preceding the school session Herbie’s PICC line had been getting progressively harder to flush and pressures on the pump during infusions were creeping up. It wasn’t looking promising. PICC lines have a shelf life, they don’t last for ever, some last a few weeks, others months but the last thing we needed was for Herbie’s line, which has been used daily since it was put in in December 2013, to need replacing.
His PICC line enters his arm and was put in under general anaesthetic, as he prepares for his Bone Marrow transplant he will need it replaced for a Hickman Line in his chest but we really want the PICC to last a little longer. Our Community nurse arranged for a visit to hospital to get some urokinase put in the line to unblock it before it became completely unusable. This meant no school for Herbie on Friday which made him rather cross but it did mean the line was ‘flushing beautifully’ when we left the hospital at 3pm and he also got lots of fuss made by the hospital teachers and TA’s and the Play specialists. He dressed up as a police officer and arrested one of our community nurses and threatened to do the same to his doctor! He was on fine form!
With the line working things should have been quite uneventful but sadly one of his neck wounds appears to not be healing and to be a bit yucky. Not really the news we wanted, especially as it’s one of the older wounds. Fingers still firmly crossed it will resolve itself.
As we approached the weekend Herbie was aware that it was his weekend for his immunoglobulin replacement therapy. He has it alternate weekends and his sister Lily has it every weekend. It involves small Neria needles being placed in the legs (although you can use the tummy but my two prefer the thigh) and an infusion of immunoglobulin being pumped in subcutaneously over an hour. This improves their immunity. Herbie has had this therapy for the last 14 months but recently has become quite emotional about it. Back in the summer he was given a pain relief device called a Buzzy which worked well when the needles are inserted and as the sting begins when the infusion hits the skin. Thanks to our lovely community nurses, both Herbie & Lily received their own Buzzy on Saturday via funding from the charity ROSY. They were so excited to get them and they worked so well. They work by distracting the nerves to reduce pain using vibration and ice pack wings.
So finally, Kate Bush…one of her songs has been going around my head for days since the announcement of her tour in the autumn. I really want tickets!
Bertie by Kate Bush
Here comes the sunshine
Here comes that son of mine
Here comes the everything
Here’s a song and a song for him
The most wilful
The most beautiful
The most truly fantastic smile
I have ever seen.
You bring me so much joy
And then you bring me