27/9/07

Elis had continued to do well over the weekend and had a really good day on Monday, even giving a good performance for the physiotherapists (photos to follow) but has given us a run for our money again over the last couple of days.

On Tuesday morning a blood test showed that his infection markers were up again. Although he was still clinically well, the consultant started him on an oral antibiotic whilst samples were taken for analysis to identify the cause and location of the infection. We then had a phonecall at 2.30 in the morning yesterday to say that he wasn't very well and would we like to go in. What a nightmare all over again.

Elis had gone from being fine at the beginning of the evening to going downhill within an hour, needing more oxygen and then being bagged, really labouring to breathe and his temperature was very unstable. By the time Glyn and I arrived at 3.20am, he was back in an incubator on CPAP and had been given IV fluids. The consultant on call had been contacted, and emergency chest Xray taken and more IV antibiotics prescribed. The fear was that he had gone down so very fast and they didn't know how bad he was going to get. Thankfully the Xray showed no evidence of a pneumothorax and he seemed to stabilise over night with his oxygen requirements coming down from 100% to 53% by morning.

By the time the consultant and doctors came for Ward Rounds, Elis had become alert enough to realise that he had the nasal assembly stuck to his nose again and was starving hungry and he was seriously unhappy about it. The first thing the consultant said was to try him back on low-flow and feed him!! Sure enough, he settled again once on low-flow and his oxygen requirements went down from 1 litre to 0.6 almost immediately. After rounds were finished, he then breastfed like he hadn't been fed for a week and was then content again.

Early indications from microbiology are that he has a urinary tract infection, so hopefully his lungs have been spared this time but we should get more results back today and can then amend his antibiotics accordingly.

Tests during the week had shown that Elis has become steroid dependant following this latest course of Dexamethazone, and even with the Dex that he is being given, his steroid levels are lower than the body should naturally make. A specialist Endochrinologist has been consulted to find out how they can now ween him off and boost his system into making its own steroids again, and the plan had been to slowly change the Dex to Hydrocortizone (in a dose that needs to be specially made for him and sent to the hospital) and then gradually reduce the dose. However, with this latest infection, his base levels of steroid are so low that it makes it very difficult to fight any illness. As a result, Elis was started on the Hydrocortizone yesterday at three times the normal dose, in addition to the Dex. We'll worry about the longer-term effects later.

Anyway, he got through the day without further incident but was really cranky again by the evening. He seems to be enjoying his new 'Rainforest Soother' which plays music and has lights and moving parts to watch and is absolutely fascinated by his reflection in a mirror.

It certainly wasn't how we had planned to celebrate his 100 day birthday - mum had even made a birthday cake for the staff in accordance with tradition (allegedly), but at least he had a chance to enjoy his birthday presents!

22/9/07

Elis is still behaving himself, spending his days sleeping and feeding, interspersed with a bit of crying. All normal baby behaviour really. What a relief!

20/9/07

Elis has kept up his miraculous recovery over the last few days and has remained on low-flow with oxygen requirements from 0.2-0.8. He's discovered that he can scream and have a tantrum now if he doesn't get feed fast enough but has been feeding really well. In fact, he has done nothing today except feed, scream and sleep. He didn't even appreciate our efforts at making life more interesting for him by putting him in his car seat for a change of scenery!

18/9/07

Elis truly is a little miracle. He was moved into High Care again last night and put back onto CPAP. He hated it and fought against it so hard that they decided to give him a try on low-flow. Well, that seemed to be what he was after and his oxygen came down as low as 0.4 litre, which is lower than it had ever been.

This morning he was moved into an open incubator and then surprised everyone even further by having a good long breastfeed, which fixed his grumps as he was no longer starving hungry! Unsurprisingly, he had lost a few hundred grams in weight during the last week, so he's got a bit of catching up to do.

Once he was no longer grouchy, he settled down for a good read and then a snooze. He was so relaxed and breathing so well that his oxygen came down to an amazing 0.2 litre. The doctors are absolutely gobsmacked! Although we accept that the steroids have to take a lot of the credit, we hope so hard that he doesn't slide back too far the other way.

Anyway, he's done us all proud for his 3rd month birthday.

17/9/07

Not much has changed today, for which I guess we should be grateful. His feeds have increased back to his proper amount and is being given to him via a tube on an hourly basis rather than continuously. He still seems to be desperately hungry though and wanting to suck anything that comes within range of his mouth.

He had stabilised enough today to come out of his incubator for a little cuddle this afternoon. Hopefully he'll remain stable enough for the consultants to start tinkering with his ventilation again tomorrow and reducing his steroids.

16/9/07 afternoon...

Elis had a settled night and by morning his pressures and oxygen requirements had both come down significantly.

At ward rounds the doctors decided to stop giving him any further morphine so that he would be fully awake and more likely to make the effort to breath. By 2.30pm the consultant had removed the tube that had allowed the oxygen to be blown into his lungs. He is now on a nasal type of oxygen support and the blood gas tests will later give an indication of how well he is managing to expel his C02 gases. These are real steps forward but as the consultant said, "He is not out of the woods yet." We hope he is in the bushes though....

Josie said that by the time they had finished messing about with him and giving him his meds he was a bit grumpy but who can blame him? He is now sleeping and hopefully regaining his strength.

15/9/07

Elis has shown some very slight signs of improvement today. His doctor decided that they would reduce some of the drugs so that he would wake up a bit more and see how he coped. They have also been constantly tweaking the instruments throughout the day so that Elis would do more breathing on his own with support from the equipment when he stops breathing for too long! We wait to see how he manages over the next 24hrs.

14/9/07

The doctors are concerned that Elis may have another infection. Samples have been sent away to grow cultures and the results should be back in 48hrs. In the meantime he has been given another antibiotic to try to preempt further complications.

There has been little progress today but they have reduced the paralyzing drug which gave him time to rest while the antibiotics started to work. This afternoon he has been awake for short periods, regained some movement in his limbs and responded to Josie's voice once again. Fortunately, he is not showing signs of distress at the moment even though he is still intubated. The respirator is also giving him 5 breaths per minute to keep the capillaries in his lungs open and he has taken the occasional breath on his own but it will take a few days for the steroids to take affect and for him to regain his breathing reflex once again.

It's a waiting game and we continue to hope for a happy outcome but his condition is still very fragile. Josie and Glyn will spend their 4th night in hospital with him tonight.

13/9/07

No change today in Elis' condition but fortunately he is no worse. The doctors continue to tweak the drugs and complex machinery to provide Elis with the support he needs. They plan to give him his first dose of steroids later tonight in preparation for taking him off the ventilator as soon as they feel he may be able to cope. Josie and Glyn remain in hospital with Elis and we continue to hope and pray.....

12/9/07

Sadly Elis' condition has deteriorated suddenly and he is now back in an incubator in Intensive Care and on a respirator again. Yesterday 's x-ray showed that although his left lung was looking clear of infection his right lung was now compromised by a different infection. The doctors are giving him powerful antibiotics but they have described his condition as critical. Josie and Glyn are at his bedside and are staying in hospital with him for a second night.

11/9/07

We've been back on the roller coaster with Elis this week. He seems to have been relatively stable without actually improving. Blood tests yesterday showed that the antibiotics have cleared his chest infection so those meds stopped yesterday afternoon but he's had so much blood taken this week, he needed another blood transfusion last night.

His oxygen requirement hasn't really reduced over the week and he started getting more unstable yesterday evening and was put back onto CPAP, which he doesn't like. During the night he needed to be bagged twice which seems like a big step backwards. The nurse this morning said that he's been a bit more stable in the last few hours.

I'll be going in for Ward Rounds shortly to hear what the consultant has to say.

5/9/07

Fortunately Elis has held his own over the last 24 hours and is relatively stable. His oxygen requirement is still very high but has come down slightly since yesterday. He seems a bit more relaxed than he was yesterday and even took 10ml of milk from a syringe this afternoon.

Hopefully he'll have another decent nights rest and start to get stronger again tomorrow.

4/9/07

Elis seemed to be doing well on Sunday and Monday. We went out for another walk on Sunday with Nain, Taid and Anti Angharad (and two nurses), although he didn't really wake up for it - we enjoyed it though!

Yesterday I gave him a bath, which he enjoyed (his feet really stank!) and was awake enough to have two really good feeds during the day. Unfortunately, his health has deteriorated over night and he was having more serious desats and bradys and has had lots of thick secretions again. He had a number of blood tests and another chest x-ray early this morning and it looks as though he has a chest infection, possibly pneumonia. His x-ray shows that his lungs are worse now than they were back in July when the last one was done.

He's been put back on CPAP which he is hating, but it has brought his CO2 back down a little and is giving him a bit more breathing support than the low flow. He's on 100% oxygen already though so if he gets much worse, he could end up back on the ventilator, which we desperately hope wont happen. The started him straight away on two types of IV antibiotic to try to fight the infection even though they don't know yet what the infection is. Now we just cross our fingers that they start working before he gets any worse.

1/9/07

Elis has been a good boy again today and has been looking gorgeous in a lovely little number chosen for him by his soon-to-be neighbour, Dafydd - thank you! It's the first of his own non-premie clothes that he's worn as he's now getting big enough to wear 'proper' clothes!

This afternoon he had a 'cup feed' which was interesting to witness - he was like a little cat, lapping up his milk. He was wide awake afterwards and spent ages reading his book - he was desperately fighting off sleep just to continue staring at the pictures!