New things

Little one's new feed... One weeks worth.

It's a little milestone that he is now a big enough size to trial the 'big kid' feeds. We will then move on to the more concentrated version which means less volume for the day. He is a very gifted vomit boy and we are trying to eliminate the quantity of vomits. Gastro are still talking about transpyloric feeding once his peg tract has formed. We'll see how things go.

 

Home again

We made it home again on Sunday morning.

The days have been beautiful August Brisbane days and the sunshine is amazing... It's so nice to be outside again.

With no central line, we have been able to bath him properly for the first time since last September and he even had his first shower! It took him a while to get used to and then his little face seemed so relaxed with the hot water on his back... First time for everything even though it's a little late. He is doing things his own way and I am slowly learning to think about new normals and milestones.

A milestone by default?

Little one had his central venous line removed today.

Photo of his line from May 2012 (lumens wrapped up)

When our doctor told me this morning, I cried. It has been the first time that I have cried openly (in front of doctors) since August last year. It was a red faced ugly cry and I don't know where it came from. I am not sure whether it was relief as we start many sentences with, 'when his line comes out we can... bath, swim etc' or 'it will be so nice when his line comes out' as it will indicate to us anyway that active treatment and management from his transplant is coming to an end. Or I wonder if my tears were from a worry that he will need it for ongoing care, bloods and levels and will need to have a peripheral cannula every time he gets sick or needs bloods done.

Central line and new peg

The bacteria that grew last week were causing him temps and breathing distress and the line needed to be removed. His neutrophils went to 18 and his marrow has responded perfectly to fight an infection. Which is the best news.

 

Of course, I have cried tears of exhaustion, sadness, loss, excitement, relief and every other emotion in between but they have been in my own space. In the car on my way home, to my beautiful husband, to my Mum, but particularly to myself in ahot shower. It felt very odd having a teary moment over something that would seem so small, but at that moment in time it felt huge.

Little one is also having a blood transfusion this evening. He will hopefully wake up pink, energetic, yet with a very sore and swollen chest. A huge bruise (hematoma) has already come up and from a distance it looks like a camel hump on his chest.

Busier than what it has been for a few months... No feed up yet until blood is done.

My head is exhausted tonight, so I am going to sleep. Today has been a very slow blur. I am forever and more than ever on days like these grateful for the amazing strength of little one and for our doctors and nurses that make everything feel so honest yet comfortable.