Today’s not just any Tuesday. It’s not just Clara’s 7 week birthday, or my friend’s 27th birthday, it’s the day we were told we would make more significant progress.
Clara, as I’m sure you know by now, is fed via a Long Line – a plastic thin pipe going into the major vein in her right leg. She’s on TPN (nutritional fluid) 24 hours a day with milk top ups, a tiny 4ml every three hours, to keep her liver functioning.
Clara’s surgical consultant said he would keep her on Long Lines as long as possible before moving to a Hickman Line. Long Lines last about six weeks at best, and Clara has had her current line for four. This means that anytime from now Clara’s Long Line will end and we’ll have to put a new one in another site. The possibilities are a key vein in her other leg, and each arm, then there’s the option of a Hickman Line in her chest.
Clara’s gastrointestinal (GI) consultant said we were ready to try her on 22 hours of TPN, with two hours off. Her blood sugar would be checked before the clock starts, half way through after one hour, and again at the end of the two hours. The time off will give her liver a much needed rest, and would start the ball rolling in terms of reducing her tpn dependency. She’ll be on TPN for a few years yet, but eventually we will get to the position where she can have 12 hours on and 12 hours off.
However, Long Lines aren’t designed for this. If fluid stops running, the pipe will block and that vein has run its course. There was discussion around running saline through, but everytime you touch the line (to swap tpn, to add or remove saline) there’s a large risk of infection.
The decision this morning was that we would keep on 24 hours of tpn to preserve the Long Line.
The decision this afternoon was we will move straight to a Hickman Line. Tomorrow.
Whilst I’d had lunch, and Clara was with the play specialists at a music class, the consultants had been talking.
They agreed if Clara’s line went in the next two weeks (which it will) it would actually be inconvenient. Our surgical consultant is away for two weeks after this week. The hickman line specialists are away next week. We’d run the risk of an emergency new line, rather than a planned procedure. So the plan is to not leave it to chance and put the hickman line in tomorrow.
So what is a Hickman Line?
A Hickman line is a long silicone tube that is inserted into the chest and runs underneath the skin to the main vein in the neck. Two small cuts are made, one in the chest and one in the neck to feed the pipe through into the main vein that drains into the heart. The chest end of the tube remains accessible and can be used for tpn feeds, blood extraction, and direct administration of medicines. The cut on the neck is closed with a single stitch and will softly scar.
The benefits of a Hickman Line
A Hickman Line has a lot of benefits for Clara, long term and short term, which is why we aren’t waiting.
A Hickman Line is a long term solution designed to last months to years. We are incredibly lucky that the Long Line in her leg has lasted this long given that she kicks so much. It’s heavily twisted but it still works. If this line was to give up soon, we may not be so lucky with her other leg. She certainly would not have tolerated having such a delicate line in her arm as it would have likely meant an arm splint and she is one active little girl with a feisty personality.
A Hickman Line frees up Clara’s arms and legs (yay to finally being able to wear jumpsuits and leggings for the first time!)
It also means when Clara is having her time off the tpn, we can get off the ward. You’ll find me in Pret sipping a skinny cappuccino with my baby in her brand new pushchair – everything I thought my maternity leave would be!
Eventually, as she is allowed more time off (ie her body copes with the break in constant nutrition) we can go further afield, even leaving the hospital to go for a walk – or even home for the afternoon. The Hickman Line will allow us to be a mummy and baby for the world to see, not just the ward staff.
It’s not without its risks of course. There’s a high risk of infection, especially given the pipe is so close to her heart one end, and externally exposed the other end. There’s a risk of blockages. But these are the same risks with any line.
They say it’s a minor operation (although anything involving veins near the heart isn’t minor in my opinion) but it’s a major step along our journey.