We are almost a week into Sophie's home IVs and it is going well.
Bertie (her port) has some gauze around him this time because they have used a slightly bigger needle due to the smaller ones blocking off, and this is to just give it a little more protection.
I am pleased my mommy instinct was spot on as she definitely needed them. The amount of rubbish she has started to clear is unbelievable and she is already bouncing off of the walls with super energy. Goodness knows what she is going to be like at the end of the 2 weeks!
Anybody fancy babysitting for a while? ;)
A few people have asked me some questions both on here and via email so I thought I would try and answer what I was able.
Firstly, the reason we don't use oral Ciprofloxacin unless we absolutely have to is because it turns Sophie into an uber monster. The drug itself is well known for mood changes etc but Sophie is only able to take it in its liquid form. The tablets don't cause as many effects. After lots of research and talking to people in the know, it was discovered that a small percentage of people react to a preservative used in the brand over here.
Sophie is one of that small percentage and the result is an evil version of my daughter. I'm not talking stroppy or even just a bit naughty, I mean EVIL.
She becomes very short tempered, permanently angry and very very violent. She spits, slaps, pinches and throws things at people. She never smiles when on it and has a permanent frown on her face. We even caught her attacking her beloved teddy (Leeber) whilst on it.
Suffice to say we literally only use it if there is no other option.
Hope that helps! It's a shame really as it is such a powerful drug against pseudo but we do have other options fortunately.
The next bunch of questions I received was asking about how we are doing Sophie's home IVs and what I meant by mixing them ourselves.
Well the simple answer is, we are literally mixing the drugs from their powder form.
Most people when doing home IVs receive a delivery to their house or pick up their drugs each week from the hospital.
These drugs are already pre-prepared. Each antibiotic has been mixed and diluted and is either in a pre-filled syringe, bag or IV ball, and is basically ready to use. All saline and heparin are also ready in a syringe to be given.
We chose to do it all from scratch to save a slot for someone who really needs it basically.
It takes a little organisation but once you get there, it's quite easy to do it 'old school'.
The most important tip I was ever given was to put each dose of antibiotic into plastic tubs. I don't mean the whole course but 24 hours worth. So every time the IVs are due, you can grab your tub and everything you need is there.
This is what three individual doses of Sophie's Aztreonam look like. Everything we need to give her one dose is in each box.
And here is the box with everything to give her, her once daily dose of Tobramycin. The box to the right has the IV pump in it.
It takes approximately 10-15 minutes to mix each dose of Aztreonam, the reason for this is everything has to be cleaned such as the tray, each vial eg saline, heparin and antibiotic to prevent any infection getting into the port.
The Tobramycin also takes about 10 minutes to mix up and prepare.
Here is what Sophie's 4pm dose of IV medication looks like all prepped and ready to be given. This is where she has both Tobramycin and Aztreonam.
My dad has kindly photographed the whole procedure for preparing home IVs (old school)and if anyone would like to see it I can either do a stand alone blog or pop them into a slide show. So let me know otherwise I will keep them for a rainy day!
I'm pleased to say that Sophie has managed to attend school and has only missed it when she has had to go and have her Tobramycin levels checked at the hospital.
The school have been fantastic and are looking after her really well. We decided as Sophie was a little lively it would be best to keep her in during break times to prevent any port damage. She gets to choose a friend each day to look after her.
Initially she wasn't impressed but eventually came round to the idea!
If anyone has any burning questions then please please ask. It may just give someone else the answer they were after too.
Take care and thanks for all the lovely thoughts and comments. My thumb is much better now!