So the background story is that John, our 2 yr old little boy who has severe haemophilia A,developed inhibitors in March, the day after his 2nd birthday.
He has had a port insertion last month, and 3 weeks later the disintegrating stitches caused a reaction, and his body rejected them, this meant he was sent to Starship hospital in Auckland for 10 days of IV antibiotics to get rid of the infection that followed.
He arrived in Starship on a Tuesday, and started the course of antibiotics. The following day the line in his arm failed, and they accessed his other hand, which went well, my husband had bathed him, and the doctor doing the accessing was very calm, and got the vein accessed on the second attempt.
My husband was concerned that the new IV site was tight and swollen over his little hand, on Thursday and so when John was seen he mentioned his concerns that it was a bleed. Both a haemotologist and a hematology nurse thought it was edema (fluid retention) from the antibiotics. Andy was told his veins would be sore from the IV, and the swelling in his fingers was just the fluid.
On Friday, Andy requested a new line be put in, which was done. It was when taking off all of the bandages that the extent of the puffiness was seen.
I was at home in Whangarei, and i was also very concerned, as from what my husband had told me, John was not using the hand at all, and it has all the signs of a bleed, without coloration.
later in the day on Friday, 2 haemotologists , and the heamotology nurse saw John and again thought the hand was just edema.
On the Friday afternoon, John was still not using the hand, and it was it was really puffy, even with elevating it all day.
On Saturday, his hand was really swollen, the new line was not really working, and by 3.30pm, was in no state for antibiotics to go in. It was pulling back ok, but painful when flushing. because of this, Andy said that John could not stand the pain enough for the antibiotic, (30 mins of pushing through) and so asked that they organise by 9pm, a new line be put in.
Shortly after that the swelling and pain was so much in the other hand, that he felt treatment for the bleed was needed immediately. 1 ml of Nova7 was administered through the painful line.
Andy requested the haemotologist on call come in to view Johns hand, as he was convinced it was bleeding in to the tissues. It was 7.00pm.Andy wanted a plan to treat the bleed.
No heamatologist arrived, or gave a plan. and so Andy asked again, that they find someone to access John so that more nova7 (factor 7a) could be given to halt this bleed.
After a horrendous amount of 12 failed attempts, by an Ed doctor and a surgical registrar, Andy pushed through the 1ml of fluid needed in to the sore line again, and again 2 hrs later. The whole time Andy is wanting someone to see the port to see if it can be cleared for use, as the whole night was so traumatic.
Sunday morning Andy 'tells' the new nurse on duty to call a surgeon to look at the port.
You must understand how frustrating it has been for a parent here. There was a variety of nurses, all week involved in Johns care, and a lot were not from oncology / haemotology, so had not a clue about haemophilia and bleeds.Quite frustrating when you are trying to remain calm, but insist on the importance of your child being seen asap. The nurses are not to blame, however we do feel frustrated that no haemotologist came to see him, on the night he needed it. My husband is not an emotional type of a guy, ( i think i have seen a tear fall - maybe 2 times in 8 years) but he told me he cried that night, feeling totally helpless for his son.
Finally a surgeon sees the port, clears it, and eventually at 3.45 pm, on Sunday, the port is accessed and the antibiotic course continues. So this was 24 hours without the iv antibiotic.
Antibiotics continued (and Factor VIII for ITT) until the Wednesday, when he returned home.
I could not believe the state of my sons hand when i finally saw it. He is a total champion, and it will take a while for this to look normal again. Although, in typical John fashion, he is his usual lovely smiley self. An inspiration to us all.