A week of frustration!!

A wasted trip to Starship

Toby was due to start the next phase of treatment called Standard Interim Maintenance which will last 8 weeks.  For this to begin his Neutrophils (or basically immunity) had to be greater than .75 so on Tuesday he had bloods done in Hastings to check his levels.  The levels came back at .50 so the Doctor told us we would not be flying to Auckland the next day to begin the SIM phase.  However, a couple of hours later Starship called to say that they still wanted to see us even though his bloods weren’t right.  I called Hastings Hospital to arrange flights and the Nurse I spoke to thought it was weird that we were still going to Starship with his levels being so low so rung them to double check and they still said yes we needed to go up.

I dragged my butt out of bed at 5:00am on Wednesday, woke Toby at 6:00am and got to the airport at 6:40am for our 7:00am flight.  I was so brave and went all on my own without Bevan too!!  We were in the middle of talking to the Doctor at Starship when she looked at Toby’s blood results and realised that they were too low to start treatment, so told us we had to turn around and go back home again!!  It wasn’t her fault, it was the Doctor that was on the day before who hadn’t realised it was Toby’s first day if SIM when the levels had to be greater than .75.

The earliest flight we could get back to Napier was 3:10pm which meant hanging around in the Hospital waiting room for 3 hours and the Airport for 2 hours.  To make the day even worse, just as our plane was called to board, Toby decided to do a huge power chuck all over himself and his pushchair - nice!!!!

Antibiotics again

The day after arriving back from our wasted trip to Auckland, Toby woke happy but his cough seemed to be worse.  He fell asleep in the chair around lunchtime and before I put him into his cot I checked his temperature as he felt hot – his temperature was 38.1.  Any temperature over 38 needs to be monitored closely especially when his immunity is low as it may indicate an infection.  I kept an eye on his temperature while he was asleep and it went up over 39 so when he woke we headed over to Hastings Hospital where we were admitted and Toby was put onto IV antibiotics.  They also took bloods and did a chest x-ray.

I ended up spending New Years Eve 2010 in a very quiet and empty feeling Hastings Hospital – not exactly my idea of how New Years Eve should be spent, but it could have been much worse I guess.  At least I still have my precious little man around J

The results came back on New Years Day to say that there is a bug in Toby’s PICC Line (yes the same PICC line that was meant to be removed before Christmas grrrrr!!!).  I’m not sure what will happen, but for now we are in Hospital for a few more days on IV Antibiotics.