Tuesday, 29 November 2011

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Finally I've been able to blog.

It's been a rather crazy couple of weeks so apologies for leaving you all hanging on how Soph is doing. Thank you to those of you who have been in touch to check on her.

Well Sophs IVs finished a week ago today and I'd love to say she is 100% back to her normal self, but she isn't really.
I cant entirely put my finger on it. She's got energy, she doesn't look unwell but she's still really productive and coughing quite a lot. Her sputum is clear though.

She appeared to pick up a slight cold towards the end of her IVs but it didn't really progress much, but I'm wondering if this is what is contributing to this persistent productive cough. It first appeared part way into her IVs and we looked at it as a good sign. The IVs kicking in and kicking all the bad stuff out but the fact it's still present leaves me with a few questions.

1) Was the course of IVs not long enough?
2) Is something else going on?
3) Is it just viral or change in weather?
4) Is it inflammation and a course of steroids could do the trick?
5) Would oral antibiotics help?

The simple answer is phone the CF team, which I am going to do, however it's difficult to explain to the team when I cant pin point the symptoms. Other than an increased productive cough, there's pretty much nothing else going on and it was the reason we started the IVs in the first place.


I'll keep you all posted and if anyone has any ideas please fire them this way.

I am also preparing the blog post with all the pictures of how we do home IVs. Warning you all now it'll be a large post but mainly all visual :) You ask, i'm going to deliver!

In other news I've ventured onto twitter, thank you to those who are following me but for the ones who had no idea I'm there, come find me as I update on there much more than here and if you have any burning questions, I answer back same day.


Leave you with a couple more pictures of Soph using my amazing camera skills :D
She had confiscated my iphone because she wanted to listen to her favourite songs and dance to them.
I see another glimpse into the future, she was too busy to even smile properly, look at the poor effort!! :D

Take care all.

Monday, 14 November 2011

Surviving home IVs (old school).

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!


Tuesday, 8 November 2011

Ouch! (insert expletive)

The Epi-pen is not my friend.

For those of you unfamiliar with what an Epi-pen is allow me to indulge you.

This pen-like object is actually a life saver, it is filled with adrenaline and used when a person has anaphalaxis(a severe allergic reaction). To use it you follow the simple instructions and basically jab the pen into the thigh, and it delivers the adrenaline to help reverse the effects of the allergic reaction and prevent death.

It works very quickly and many people carry these who have known allergies such as people allergic to bee stings, peanuts etc.

We have a couple in our house for when Sophie has home IV antibiotics in case she were to have a reaction to the drugs. As they are injected directly into her vein, if she were to react it would be quite quick and be an urgent situation.

Before we set off up to the hospital to get Sophie's port accessed to start this round of IVs, I was having a clear out of her IV box. I noticed that the Epi-pen we had was out of date. Being the conscientious nurse I am, I decided that it wouldn't suffice just putting it into our sharps box.

Oh no, what if someone was crazy enough to reach in there and pull it out and inject themselves?

So I told Ian I was going to discard the adrenaline and then I wouldn't need to worry about someone hurting themselves with it.

Easier said than done let me tell you.

For reasons unknown the pen wouldn't expel it's contents and me being the stubborn creature I am, began to fiddle with it until BAM, the pen deployed itself sounding like a gun going off, followed by a very loud squeal.

Oh yes, that is a puncture mark in my thumb..

And again, you'd be right if you thought that was a puncture mark in my nail..

Not the greatest picture but you should be able to make out where the needle entered the back of my thumb and came out through my nail on the other side..

The needle appeared to hit the bone in my thumb which made it bend allowing it to come out through my nail at the front.

Good times!! I can tell you it really hurt but I have done nothing but laugh about it. On a serious note, I am lucky in two ways.

1) Due to the needle going straight through my thumb, most of the drug didn't enter my system. If it had I risked losing full circulation in my thumb and would've had to go straight to hospital for more injections to reduce the effects of the adrenaline.

2) The pen was out of date so the drug was in a weakened form so any in my system wouldn't have had too much effect.

The doctor who did look at it for me tried not to laugh too much as he knew me and knew I was a nurse and really should know better.

The moral of this story is, do not fiddle with objects that appear to be stuck! :D

Sophie's IVs have started so officially day 1 of 14. So far so good and I will fill you all in soon.

Thank you for all the well wishes and support, it is appreciated. If anyone has any questions feel free to ask. I will be answering those that have already been asked this week.

Take care and feel free to have a good giggle about my misadventure, we all have!!

Tuesday, 1 November 2011

Decision made.

Next Tuesday our house is going to look like this.

We'll be mixing these ourselves again. (No pre-mixed as we feel it's always kinder to keep a pre-mixed slot open for someone who doesn't have help to mix IVs).

To do this for two whole weeks.

Joint decision between us and the team to give Sophie two weeks of IV antibiotics before the real winter sets in despite her chest being a little frisky at times, she's still fairly well and we want to keep it that way.

There was a brief mention of Ciprofloxacin orally however Ian politely told Soph's CF consultant he could have her at his house for the duration if she was going back on it :)

He declined but feels it's sensible to give her an annual blast of IVs so this is where we are at.
They are more than happy with her weight (see previous post if you haven't already), her dietician had a little giggle at the letter and said to continue as planned.
Sophie managed to do an on demand sputum sample in a pot as well as a cough swab so hopefully only MR Pseudo will be present.

Plan is to flush port next week instead of being done today so it can be accessed in one go and then start IVs.

No overnight stay which is always a blessing :)

Wish us luck as it has been almost a year since we last did battle. Sophie will be attending school the whole time too hopefully. I have a meeting with the school tomorrow morning to break the news.

Take care all :)

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