A bloody mess.

Our lovely community nurses visited yesterday to take a blood level for the anti fungals Isaac has been on the last month or so. This is to check the level of the drug in his bloodstream is high enough to be at a therapeutic dose. Kind of different to his normal antibiotic levels which he has on IVs, which are to check for that, but also more importantly that the level is not so high it fries his liver and kidneys. For antibiotic levels, blood is taken from a finger prick as taking blood from his port might mean we have an abnormal level of residual drugs in his port line (in case you are new to this blog, Isaac has a portacath fitted in his chest, which is a little device connected to a major vein in his chest, and implanted under his skin - this enables us to easily access his vein when we need it, by putting in a short (1 inch) gripper needle through the skin directly into the port - making venous access much easier than inserting a cannula or other kind of line, as after years of IV treatment, his veins are shot). However, for a Posaconazole level, he only needed to have blood taken from his port, which needed flushing anyway (every 4 weeks). Great. Only, blood was not forthcoming from his port. It simply wouldn’t bleed back. This is not terrible (for the Posaconazole level, he ended up having a finger prick instead) but it is frustrating, as it’s possible his port has given up bleeding back for good (it happens) meaning he’ll always need needles for outputs (bloods) and his port will only be good for inputs (drugs). 

Anyway, that was quite a long ramble when really what I wanted to say was that he ended up two needles and two finger pricks in, and a bit of a bloody mess at the end of it. But did he complain once? Nope. 

He’s been really well these last few weeks - but his cough is beginning to increase. I had hoped the antifungals might be the magical factor in him lasting longer between courses of IVs, but now I’m not so sure. At least I can be sure of his fantastic let’s get on with it attitude. 

I wish I were half as strong as my fourteen year old son. 

Have a great day x 

Georgia O Keefe 

Life is beautiful.

Clinic this week. Anti fungal treatment will continue for another two months. Lung function was up 3%. Not exactly party time, but a hope filled step in the right direction. Right now, Isaac is feeling well. 

I pass this boat every time I walk Obie down by our river. It always makes me smile. 

Happy summer everyone x 

Cracked lips, home, and well.

Isaac is home and well. The anti-fungal side effects continue to be quite evil, his bottom lip is so cracked it’s almost a crater. The treatment course is three long months. He complains hardly at all, as per his norm. God, I love this kid. His monosyllabic responses to ‘How was the trip?’ ‘Was CERN great?’ ‘What was it like at the UN?’ indicated a typical teenage blah enjoyment of anything vaguely educational. I’m taking that as a positive. 

Have a great day x

Nicola Davison-Reed

Away Away.

Isaac is in Switzerland. Our fears of him not being well enough to go on this school trip were joyfully dispelled - this week he is visiting CERN, the UN, St Pierre Cathedral, the Natural History Museum and enjoying a boat trip on lake Geneva. School trips have changed somewhat since our day, when a dusty day trip to Calais, to order une baguette ci vous plait was seen as a cultural peak.

While away, he is on physio, tablets and inhalers only, as agreed with his doctors. They were keen he take only what they could trust him to do independently, rather than send all the nebuliser drugs, chargers, part and machines that he might not do, and would need sterilising, that he could not easily do. He has back up antibiotics if he becomes less well to hand, and a whole load of sun block to put on for the side effects of his anti-fungals which make him uber photosensitive. His lips continue to crack and bleed on this toxic drug too. That aside, he left feeling good right now (at least, Isaac good). 

I on the other hand feel anxious. The logical 5% of my brain tells me it’s just a few days! He is fine! He can call! If he comes home less well, we can just increase physio! I’m being neurotic! Unfortunately for me 95% of my brain is made up of irrational fear, love and anxiety when it comes to Isaac. I have spent 15 years now, in utero and beyond, trying everything to keep him well. It’s hard to start to let go and trust him to take up the reins. 

But it will be worth it - what an amazing chance, an opportunity we would not want him to miss (but that we would like to see him home well from after) x 

Post IV lung function

Nothing to celebrate here. 

Nothing to cry about either. 

An increase of 4%. 

Not the 20, 30% of my dreams. 

Not the 10% of my reasonable hopes. 

But no stalemate. 

No decrease.

After another two week course we are relishing in IV free times - more sleep, less schedule. Suddenly, everyday treatments feel like a breeze! 

When I deaccessed him, his port site was sore, open and goey (it may be he needs a new needle size, as it looks like a pressure wound). It’s now healing nicely, TF (infection in the port would be very bad news). 

He has started on a three month course of treatment to try and clear this fungal infection. 

We’ve swapped the drug to one which is a little less toxic than the first week. 

He needs to have blood levels taken to check we have the level of the drug at a therapeutic one, but not so high it fries his liver and kidneys. 

The side effects still required an A3 sized drug pamphlet. 

So far, so good. 

New changes to his physio plan to try and shift the mucous better from his lower airways. 

He continues to amaze me - don’t get me wrong, he is a moody teen like the best of them, but how he takes this all in his stride without complaining is incredible. 

He is going away with school for three days soon - he’d lost a lot of confidence about being well enough to go, but these last few days, seems keen, more hopeful. 

Daring to look forward to something. 

He is better. He is. 

Please let him stay well for this, he’s already missed out on too much.

Thank you for reading x 

From our epic trek in Surrey - almost over £5000 now!