Thursday, January 10, 2008

January 10, 2008

Happy to be home!
Hello again. After a good sleep last night, we're all feeling pretty chipper today and Charlie has been full of beans. Were it not for the sticky elastoplast marks all over him and the little puncture marks left, right and centre, you'd never know he'd been in hospital for the past three days!
As I said in yesterday's post, everything went well at the hospital. The doctors were thrilled by how well Charlie's doing - his energy levels, size, heart function, oxygen saturations etc.
All our hospital roleplay last week really helped, and although some of the things that happened weren't particularly pleasant for Charlie, he wasn't frightened because he knew what was going on the whole time.
We'd been worried how he'd react to having a cannula inserted, but he was a real superstar. He sat on my knee with his arm behind my back, and we read his favourite story (as requested by Charlie!). Barring a couple of 'ouches' Charlie barely blinked as they put his 'magic tap' on.
He wasn't phased by the anaesthetic room either, and managed to count to ten before the sleepy medicine did the trick!
He was uncomfortable when he woke up, particularly because the doctors had decided to access his heart via his femoral vein (in his groin) and via his jugular (in his neck) to get a really good picture of what was going on. Equally his throat was sore because of the probe that they had inserted.
First inklings of a smile after the procedure
He recovered pretty quickly though, and by that evening was eating like a horse... two packets of Quavers, four digestive biscuits and a huge bowl of Rice Krispies within the space of about 15 minutes!
The consultant came around to give us the results of the catheter, and we couldn't have hoped for better. The pressures in Charlie's heart and lung veins were very low (which is a good thing!) and the leakage from his tricuspid valve (which by this stage is usually somewhere between moderate and high) was pretty trivial (also good!). As far as the fontan surgery is concerned Charlie seems to be an ideal candidate.
The only slight glitch in the proceedings was that we noticed on the monitor that his heart rate was fluctuating a bit. From a normal rate of between 80 and 100ish, it would suddenly drop down to around 58. It would stay there for a minute or so and then return to normal.
This did not affect Charlie at all when it happened and he had no symptoms when his heart slowed down, so initially the medical staff thought the machine was at fault and brought a new one, but the intermittent bradycardia (slow heart rate) persisted. Because the slow rate didn't seem to have any effect on Charlie, the doctors weren't particularly worried about it, and thought that rather than having been caused by the catheter, the heart rate issue (known as intermittent heart block) was probably a pre-existing condition, which may well have been caused by Charlie's last op when he was five months old. Consequently his body is used to managing like that, so it isn't really a problem.
He was monitored overnight and his heart rate remained pretty stable, and the doctors decided the next morning that we should stay in an extra day so they could run a 24-hour tape to get a fuller picture of what was going on. This meant Charlie had three ECG stickers attached to his chest, and a small pager-sized box on his belt all day and all night to keep a check on his heart rate.
This was done and the next morning the doctor telephoned the ward to tell us the results - the vast majority of the time Charlie's heart functions normally (in sinus rhythm) but every now and again it flips into the low rate for a minute or two, and then flips back. As it isn't affecting him, nothing needs to be done about it. If it does start to affect him in future, he may need a pacemaker at some point, but that isn't a big deal, so we're not going to worry about it now! As far as we're concerned, anything that helps that precious little heart keep beating is fine by us!
So, funny heart rhythms aside, Charlie's catheter was a big success - his heart function is fab, his pressures are great and he is suitable for the next stage of surgery. Hurrah!
While we were at the hospital, one of the best surgeons around for Charlie's condition came in to see another patient. His name is Bill Brawn, and parents like us tend to fall down and worship at his feet when he enters a room - he is the main man as far as HLHS surgery is concerned. I can't sing his praises highly enough - he and another key surgeon (David Barron - who carried out Charlie's previous surgeries) have saved our son's life twice now, and we have every faith that they will do it again next time.
Anyway, after Mr Brawn had spoken with his patient, he was on his way out of the ward when he spotted us and came over. He recognised Pete first, who has had some dealings with him in his work with Little Hearts Matter. He chatted with us for a while and was flicking through Charlie's notes as we talked.
Firstly he couldn't believe what a good size Charlie is. The hospital weighed him on admission and he was 18.1 kg (about 40lbs). According to Mr Brawn, they often have trouble getting children to the required weight before the fontan surgery... that weight being 15 kg (33lbs)!! So we've already ticked that box and Charlie's not even having his op yet! It seems that the bigger and stronger a child is, the better outcome post-fontan, which I guess makes sense.
Also the fact that Charlie's heart function and oxygen saturations are so good is brilliant.
Mr Brawn was very pleased with Charlie's energy levels (at this point I was trying to restrain him from jumping on the bed and throwing his large cuddly crab at the eminent surgeon!!) and also that he is doing so well developmentally, and achieving/exceeding his milestones.
To be told by Mr Brawn that Charlie was doing so terrifically well, and to hear 'Well, we won't have any trouble with you for the Fontan!' was immensely gratifying.
I know I've said it before, but we hear often that Charlie is doing well, and that he's really exceeding expectations, but to hear it from someone who is SO experienced in the world of HLHS, is just amazing.
So they let us out the next day, and we're much relieved to be home. Charlie actually quite enjoyed his hospital stay, and is already talking quite positively about when he goes back next time to have his heart fixed. (When he went down to theatre, they painted him from neck to chest, and from navel to knees with pink betadine antibacterial stuff... he's already decided that next time he'd rather they used blue, 'because I'm a boy, and pink's for girls!')
The only really tough bit was taking his pressure dressing off the morning after his catheter. It was 6x3ins of extremely sticky elastoplast, wrapped from his right hip, down around his groin, and up onto his bottom. There was no way to get it off gently, and it was so sad to see him cry. (I can't say I blame him though - it made my eyes water just watching.) Even so, he was fine again within a few minutes. He really was astonishingly brave throughout, and even slept well, which was a real bonus.
While we're obviously dreading going back for his fontan, this experience has reassured us that it isn't too awful once you're in, and that Charlie will be able to cope with it all.
He really is an amazing, brave, stoical and wonderful boy and we are SOOOOOO proud of him!


Anonymous said...

Well it sounds like you were a very brave boy Charlie, and as always your smiles show you are taking it all in your stride-well done.

Its good to hear that everything is going well. Take care.

Love Lisa Morgan

Anonymous said...

Praise God, Alison! I have been checking in often to find out how everything went. It sounds like it was near perfect and that surely is a load off your mind. I saw you were following the Lawrenson's story as well. They seem to be getting along much better than expected. So much for everyone to be thankful for! I am still thinking about you and praying, just wanted to let you know. Love, Edna Williams

The Life of a Paed Heart Transplant Recipient said...

Well done Charlie! We are really pleased to read this good news ....... WOW!

Lots of love

Bev and Lucy xx