Emails sent by us to family (including typos)
To: Ann & Murray MacDonald
Date: Sun 17 Feb 2013, 07:30am
Hi there, don’t think there’s going to be a chat this morning unfortunately: we’ve spent the entire night in hospital with Derin.
He has had a nasty virus for the last four days and has not been reading well etc, buy last night we called NHS. They said to come in immediately. Found he had a heart rate of around 260bpm! Ie too fast to count.
Managed to bring it down but it switches back.
That was seven hours ago. They’re now trying to figure out how to get Derin to a hospital with a paediatric cardiology unit.
I’m too tired to write any more.
To: Murray & Ann, Richard, Ross, Hulya
Date: Sun 17 Feb 2013, 14:32
Now at Great Ormond Street (GOS) children’s hospital-Derin’s first ambulance trip. Just spoken to the cardiologist.
Long term the doc thinks there is no problem. Probably Derin has a predisposition for his heart to go crazy but it’s not uncommon and in his case seems to be only when he has a fever or something.
They want to put him on beta blocker drugs right now to settle the system but will first do a bunch of scans to make sure that the drug won’t be a little too effective at slowing his heart.
Right now he’s sleeping with a tiny bit of chemical help. He’s absolutely exhausted. He hardly slept last night or yesterday and whenever he did get to sleep he was woken about 5 minutes later, traumatic time in hospital being treated as a pin cushion (took them more than 8 attempts to get a tube in his vein – no fault of theirs; just couldn’t find the veins, with him crying the whole time and his heart rate going up to 260+ , highest I saw was 286). Now he is very suspicious of everyone. Very nice hospital we are at now. GOS is a world leading hospital and is totally dedicated to children, so I guess there aren’t many better places to be under the circumstances.
Attached photos of him sleeping are right now. The monitor is a few hours ago at Royal London Hospital.
I’m sure that Derin and Sheb will be staying here tonight. I’m looking forward to going home soon and getting some zzz. No sleep last night and only four hours the night before.
Sheb also exhausted. Of course most important thing is that he gets better soon. In this respect the cardiologist’s assessment makes us feel better than we’ve felt for several hours.
To: MacDs and Tuncels
Date: Tues 19 Feb 2013, 19:15
Hi there,
We're now waiting for a taxi to go home.
Derin is on beta blockers (can't remember if I've said this already) which seem to make him a bit drowsy. This will need to be checked as they think that he will be on some sort of drug until he is big enough (20kg, 5 years old) to do some "minor"surgery on - cauterise the extra nerve pathway he has in his heart. Apparently that is day surgery, not overnight!
So for the next couple of days we will probably have a sleepy boy, but in 48 hours we will have a phone consultation with the doc. If he is still sleepy they will review the medication: type and quantity.
We've got an appointment with the cardiologist on 1st march to discuss everything in our minds. This is only four days before Sheb and Derin head to Turkey. We have told them about our plans. The consultant cardiologist said that the Melbourne cardiologist (he knew him by name, Andrew Jones) is truly excellent.
We're ready for home now and looking forward to having a shower.
To: MacDs and Tuncels
Date: Sat 23 Feb 2013 11:14
Hi there.
Saturday Morning status update:
Still in hospital for observation. Derin started a new medicine (Flecainide?) on Friday evening. This is as well as his beta blockers; not instead of. Unfortunately the BBs are given to him every 8 hours, and the new one every 12, so we have 4 medicine sessions per day; inevitably when he's asleep.
Without wanting to be overly optimistic, things look fairly settled right now. His heart rate hasn't done anything interesting since Friday afternoon. It's now Saturday late morning.
Docs have said that we should expect he'll be in for the whole weeekend but there is just a chance that, if they can all agree, he/we will be released this evening.
Since Thursday we've been at Royal London Hospital, not Great Ormond Street. The difference is spectacular. How best to describe it: When we were at GOSH one of the nurses there explained to me that it is a "tertiary" care provider. I think what she meant was that e.g. your GP is primary care, hospital is secondary care, the GOSH is where you go from the hospital. She said that the ward we were on (cardiac) isn't used to having patients as well as Derin; most of the patients there are either open-heart surgery or transplants, but apparently they don't do transplants during the weekend so things were _reasonably_ quiet. Derin was classified not as a "critical care" case, but as "high care", and this was very much what it was. There was _always_ a nurse available, and they _all_ knew everything. Probably more than one nurse for every patient, so while we didn't have our own personal nurse, there were 4-5 floating around and one of them was _always_ there. It was clear that everyone had read all the notes. No-one asked stupid questions.
We arrived there on Sunday afternoon and in the evening they arranged accommodation for Sheb and me in apartments just across the road and owned by the hospital. At some point one of the nurses told Sheb and me to go and find ourselves some dinner. She recommended a restaurant, and said not to rush back; it was obvious we needed a break and she'd look after Derin. We stayed late with Derin that night, but did eventually go to our (very basic) accommodation and left Derin with probably the world's most over-qualified baby sitters.
On Monday test results came back showing he had the flu virus, so he went out of the ward (only had one other patient) to a private room for quarantine. Initially I thought that this meant we had kind of lost the immediate access to nurses (they weren't always in the room with us) but then I realised that there was one sitting at a desk just outside the room, looking through the window at Derin's heart monitor and taking notes. This was VERY high care!
Now we're at RLH. I suppose on the positive side, they're still in regular contact with GOSH, and GOSH has decided they don't need us in there, so that's got to be a good sign. However the standard of care - not just the number of nurses - is dramatically different. Sheb and Derin arrived here on Thursday afternoon. When I got there in the early evening she was going crazy - no one had given her even a cup of tea. She asked one of the nurses where she could get a tea and was told to go down to the canteen on the ground floor (we're on the 7th). When she said "And leave my baby crying here?" the nurse just shrugged. On Friday afternoon someone came round and told Sheb that mothers that are breast-feeding are given meals, and showed her where to get tea on the ward, etc etc. The staff here just seem to be incredibly badly trained/informed.
In another incident one of the nurses wanted to check Derin's readings using a different monitor, so wanted to put more sensor-stickers on his chest. She insisted on taking off the ones he had on first. He's a baby; he's got very sensitive, delicate skin. We really don't want to be pulling things off his skin if we're just going to re-stick them later. Anyway, once she'd got him thoroughly distressed by pulling all these things off, Sheb asked if she could breast-feed him or hold him to calm him down while the readings were being taken. The nurse said she couldn't because that would interfere with the readings, so Derin was left screaming in his cot, while the nurse struggled to organise everything and in a memorable quote while trying to get the machine working said "I don't know what I'm doing here". Predictably the readings she got were garbage. Fortunately at that point a doctor came along and set the machine up properly and told Sheb she could feed Derin and that it wouldn't interfere with the readings.
Now we're here for "observation". I suppose that means they want us to be in the hospital for 24 hours after starting the new drug just in case it does anything too exciting like actually stopping his heart. I hope so, because the actual amount of observation he's getting apart from by us is pretty minimal. He's attached to an ECG so he can't walk around or go anywhere other than his cot and high chair, but the ECG doesn't record anything - it only displays. So it is up to Sheb and me to note anything interesting. It seems a little inadequate in this day and age! Surely we can have a machine that records everything internally then it can be sent for analysis.
Oh, by the way, the problem Derin was having last weekend is called supraventricular tachycardia - or SVT. There's a good explanation at this wikipedia link; you google SVT Heart. Note, this is not the problem he was having on Thursday, which was much more benign tachycardia. The difference is fairly easy to see after a crash course in cardiology: If you look at an ECG chart for a healthy pulse you'll see that there are three signals in the cycle:
1. Signal to pulse (very small),
2. Pulse (very big),
3. Signal to reset (quite small).
With SVT the heart is racing because there is a short circuit in the wiring so the signal to pulse is doing multiple laps. In the chart on the wikipedia page you can see that there is no pulse signal.
Right, must post this now or it'll never happen.
Love B, S(leeping), and d.
