Farewell to Elis

Our thanks go to everyone for their kind thoughts, comments and cards. Although his life was woefully short, Elis was such a special little boy he found his way into so many hearts and we are all grieving together.

Glyn and I don't feel that a traditional funeral is an appropriate way for us to say our goodbyes to Elis. Instead, he is finally coming home on Friday when our family and some of the nurses who cared for him can have a chance to share our memories and be with him one final time.

As such, we would rather not receive any funeral flowers but if you would like to make a donation, we will be liaising with the Special Care Baby Unit at the hospital to buy something in Elis' memory which other parents and families will benefit from in the future. We will personally collate all the donations and let you know in due course what the money has been spent on.

On a more personal level, we continue to welcome your comments and kind wishes which we would like to incorporate into a memory book during the coming months.

Please keep Elis in your thoughts from time to time - his determination was an inspiration to us all.

With love and our sincere thanks for your interest and support.
Josie and Glyn xx

24/11/08

Almost as quickly as he came into this world, Elis slipped away from us last night whilst in my arms.

Our eternal thanks go to the staff at the Royal Glamorgan Hospital, who against the odds, gave us time to get to know our precious son and above all, loved him too. Also to all our family and friends who have supported us through this ordeal. What an appalling year for us all.

Give your kids an extra big hug and kiss for Elis when you next see them. He couldn't have been more loved.

22/11/07

Yesterday it looked as though the new medication was working well for Elis and he was looking quite a lot better although still on a lot of oxygen. However, today he has taken a turn for the worse again and things are looking pretty bleak at the moment.

20/11/07

Things haven't gone so well for Elis over the last couple of days and yesterday the consultant spent a lot of time with him. He had a heart scan and ECG and it now seems that his problems can be attributed to pulmonary hypertension. The right ventricle which supplies the lung has been working so hard it has become enlarged and so is squashing the left. It also can't push out enough blood (because of fluid retention amongst other things) that blood is just being shunted back across to the left ventricle, therefore not being oxygenated. It's not an easy condition to treat, but there is some medication on its way from Gt. Ormonds Street Hospital that should arrive today around 12 noon. It will then take 24-48 hrs before it takes enough effect for them to review dosage. At the moment he is back in an incubator on 5 litres nasal, 65% ambient and the facial mask and his sats have been 30-70, but averaging 50-60 which obviously isn't great news either. He's been given lots of extra frusemide and now we all just need to keep our fingers crossed that he hangs on in there for the next few days until the treatment has a chance to help. If at all possible they will avoid going the ventilation route as that could be counterproductive and be extremely risky.

There is nothing any of us can do now. It's up to Elis to keep going and as he is not showing signs of distress this will hopefully relax the blood vessels in his lungs to reduce the pressure on his heart. The doctors will of course respond if necessary. Josie and Glyn are looking after each other and both know that everyone is routing for Elis. They would prefer to keep a low profile during this stressful time but we hope to have better news as the week progresses.

14/11/07

It's all been a bit pants over the last couple of days. Elis was put back in an incubator in Intensive Care yesterday morning as his oxygen requirement was increasing again. He's back in steroids to help his lungs, his diuretics have been increased and a chest Xray taken yesterday afternoon revealed that he has another chest infection so is now on two types of IV antibiotic as well.

He's got bigger prongs up his nose so that he can get more oxygen that way and was in 65% ambient oxygen in the incubator as well. By the time I left this evening though, the incubator oxygen had been weened back to to 21% so he could then be put back into his cot. It seems very strange to have a cot in Intensive Care but there are no spaces in High Care at the moment for him to be in there. Hopefully the antibiotics will nip the infection in the bud and the other meds will bring his oxygen back to a manageable level. Chances are that he will now need to stay on the steroids for the forseeable future to help Elis' lungs function better so all the targets that we were working towards a couple of days ago are now out of the window. At the moment we'll just focus on getting through this infection and get him on an even keel again.

12/11/07

Elis seems to have been a bit more relaxed today and his sats were generally a bit better although he's still been on three litres of oxygen. His diuretics are being changed as of this evening so fingers crossed that this does the trick for his oxygen requirement.

It would seem that the cysts on Elis' lungs have been there for some time and are just more apparent as they are bigger at the moment but shouldn't cause any specific problems in addition to the general Chronic Lung Disease.

11/11/07

This week has been a bit stressful as Elis' oxygen requirement has continued to be problematic. To compound the issue, he had his 16 week immunisations on Wednesday and reacted a bit badly to them for a couple of days. During the week his oxygen requirements have crept up and by yesterday he hit a whopping 5.5 litres. He doesn't seem to by symptomatic of infection and he's not been too bad with taking his bottle feeds. He was given another extra dose of diuretic last night as the thinking is that perhaps the fluid is building up again and making it difficult for Elis to breathe and putting more strain on his heart. It seemed to help but he's still been on three litres of oxygen today and his sats haven't been particularly good. I'm looking forward to hearing what the consultant has to say tomorrow morning as I have gone back through my notes and I think that the period when his oxygen requirements were at their lowest coincides with when he was on a course of this additional diuretic.

The good news is that when his steroid level was checked during the week, whilst we were expecting it to still be low, it was actually high. The dose was halved on Friday and his final dose was given this morning. Once he has had a week without any hydrocortizone medication, he will be tested to see if his body can produce a burst of steroids if it is put under stress. After this test, the doctors will be in a better position to know whether he could cope with undergoing surgery at this stage. At least this is something that has gone in the right direction this week. It's a bit of an unexpected kick in the stomach that we now seem to have increased respiratory issues to resolve. Poor Elis, it really is one thing after another.

Oh, it also seems that his Xray last weekend shows that he now has cysts on his left lung. Again, I'm not entirely comfortable that I know the implications of this, but I've been told that its not an uncommon development with Chronic Lung Disease and it might improve or it might not. It will make Elis more vulnerable to chest infections and further infections could result in further cysts... Just another topic for me to discuss with the consultant tomorrow.

6/11/07

We haven't had a particularly good weekend with Elis despite his Nain. Taid and Anti coming to visit! His oxygen requirements suddenly increased quite dramatically and he was labouring much more to breathe. However, he had clear blood tests and a chest Xray overnight on Sunday night which showed no evidence of infection so he was given an extra dose of diuretic in case it was caused by a build up of fluid in the lungs and that seems to have done the trick. He is now back on one litre of oxygen and seems pretty stable again. Unfortunately, this little blip has again pushed everything back whilst we wait to see if it happens again so the prospect of his homecoming seems to have evaporated once again. Gutted. We know that everything has to be in Elis' own time and there is no way we would (really) want him home before he is well and truly ready, but the longer it goes on the less emotional resilience I seem to have. I just need to get a grip again and deal with it - there are no other options.

Meanwhile, back to Elis! Despite his boosted diuretics, he has still gained a few grams in weight since Friday and is now just over 7lb 6oz.

1/11/07

I can't believe it's now November and I've been at that hospital since April. What a year.

Anyway, we had a lot of fun with the babies on the unit yesterday and they all looked absolutely fab in their halloween outfits. Not to be outdone, the mums had a lovely lunch at a local pub too.

Now, what shall we do for bonfire night...?