Day 121 – 24th February

Sorry for thr the lack of updates on Thomas over the last month. Not much has been happening in terms of lreogress forwards and we’ve been stuck pretty much waiting. So, what has been happeneing…:

An interesting few weeks. Since the last update on the 28th Jan, there have been a few ups and downs and he’s pretty much in the same place ventilation wise.

We were told that Thomas’ main immediate issues were his nutrition (he was failing to thrive), his continual infection cycle and his airways issue.

So, his feeding method was changed to continual NJ needs (into his jejunum) with high calorie formula and topups of EBM as extra NG. This seems to have been the answer to his weight gain...

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Day 94 – 28th Jan

Thomas has had an interesting couple of weeks.

There have been no updates really as there wasn’t much to say other than ‘still weaning his ventilation’. This was going really well and he was settled, happy and content.

However, he’s been hit again by infection. Thomas managed to get down to almost extubatable pressures by Tuesday of last week. We were planning his extubation to be Thursday or Friday, following one more pressure wean and we’re talking about the best non invasive ventialtion to wean him on to. However, by Wednesday morning all this had changed and he was desaturating over night and required increase in ventialtion.

By Wednesday morning, all the work of the last two weeks was undone and he was back on the same high pressure that he was when the weaning was started...

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Day 81 – 15th Jan

Not much to report really from the last week. Thomas’ CRP and WBC count are back within normal range so now were back to trying to get him off the ventilator within a week or thereabouts.

Thomas very much likes to do things in his own time, in his own way and he’s well known for this in ICU, so we will see how he does with the weaning over the next week or so.

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Day 74 – 8th Jan

Thomas’ echocardiogram today showed that he doesn’t have endocarditis. Massive relief. Just sepsis then. Never thought I’d be happy with ‘just a bit of sepsis’. How this puts things into perspective!

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Day 71 -6th Jan

Upon visiting Thomas this morning, I was told that when his echocardiogram was reviewed by the cardio consultant last night, there is concern that there may be a vegetative growth in his heart, which would mean that he had endocarditis. One of my biggest fears.

His blood cultures are still showing growth of pantoea agglomerans despite being treated with strong antibiotics. So, they will repeat the echo on Monday to see if the suspected area of vegetation has shown any increase in size.

Anyone that has had heart surgery is at an increased risk of contracting endocarditis because heart surgery leaves scar issue.

A ‘normal’ persons heart has a smooth endocardium (lining inside heart) and therefore any bacterial blood infection would normally just circulate around, not sticking to anything...

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Day 70 – 5th Jan

Thomas was left alone most of the day.

He had a brain scan to check that there was no bleeding as his platelets had dropped quite a lot.

He also had an echocardiogram to check for infection in his heart due to the rapid rise of his CRP and WBC.

Both of these were cleared thank goodness.

His blood cultures have grown a gram negative bacteria called pantoea agglomerans. So his antibiotics have been tweaked slightly to fight this.

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Day 69 – 4th Jan

Today hasn’t been the best of days for Thomas.

His day of problems started off when he has some physiotherapy to help him dislodged and being up any secretions that stick within his large airways and deeper within his lungs.

The physio did exactly that, and dislodged a lot of thick, sticky secretions. These weren’t immediately removed and his alveoli plugged causing him to have big issues exchanging gases. He was given lots of suction, however he had so much going on that he wasn’t able to cope, was working very hard sucking his stomach in to help him breathe, and eventually stopped tying to breathe for himself. His ventilator was set to do 15 breaths a minute for him so he was only getting those breaths for a short while.

Thomas was also given an NJ tube today, this is a feeding t...

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Day 68 – 3rd Jan

This morning started with a sit down meeting with Thomas’ lead consultant and another intensive care consultant who is also a lead long term ventilation consultant.

Although Thomas hasn’t failed to extubate a third time, they are starting to look into the possibilities of long term ventilation (LTV) for Thomas, which would be in the form of a tracheostomy and vent to go home on. This is not a road we particularly want to walk down, but if it’s what Thomas needs, then that’s what we will do.

We had a very positive meeting which lots of explanations and questions posed and if not answered, ideas on how we can explore them further.

So for now, Thomas has around a week to see how he does ventilation wise before any more decisions are made about LTV or possible surgical options to see ...

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Day 67- 2nd Jan

Still working on ventilation weaning.

After a long discussion with Thomas’ lead consultant, it has been decided to take things very slowly in terms of his ventilation weaning to give him the best chance of getting him extubated. So he will have very small tweaks every 4 hours with the aim of seeing if we can get him on lower settings, and if he doesn’t tolerate it, to see the exact point that he doesn’t.

It has also been decided to leave his sedation medication alone as he is completely dependent on it. This is something we’ve been asking for now for a while. This will let us know if his failure to extubate is because of his airway issues or if it could be sedation related.

Slowly is the plan…fine with us! After 10 weeks in, we’re in no rush!

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Day 66 – 1st Jan 2018

Happy New Year!

Thomas took a bit of a backwards step overnight as he was no longer tolerating his lower ventilation. He was put back on to bipap mode so is being given some of the breaths he is taking. His pressure support has also increased.

Back to weaning again.

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