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Today hs been mostly about waiting for results to try and get to the bottom of what happened yesterday evening. Thomas has been kept under paralysing drugs until about 3pm to let him rest and recouperate. Once he woke ups, small ventilation changes were made but nothing too big for now. He needs to get over what ever caused him to have this setback and get him back down slowly to his lower ventilation settings.

There is a plan to look down his airways tomorrow using a bronchoscope to see if he is not tolerating lower ventilation due to his tracheobronchomalacia.

Today was huge progress with the ventilator. Thomas got down to the least settings he had ever been on, and the ventilator could not be set any lower.

Extubation was planned for later this evening after he was given a blood transfusion. Everything was looking very positive. However…

This changed very rapidly. Within 30 minutes of being given blood, Thomas had a bad apneoa moment when he refused to breathe. The ventilator was set to only give him minimal breaths so as he was holding his own he desaturated rapidly and required bagging to bring him back up. He then wouldn’t tolerate the ventilator at all and was fighting everything. Since no one ias sure what happened, he was given a dose of rocuranium (paralysing muscle relaxant) and required full SIMV ventilation.

We are not sure what ha...

Thomas’ infection markers are still on the way down today from yesterday’s 72 to 44. Really good news!

There was some more weaning on his ventilator to lower rate and pressures and he was stable all day.

Today has mostly been a plain sailing type of day. Stable and happy with minimal intervention, just some slight ventilation changes to get his pressures and rate lower.

It was noticed in the afternoon that Thomas’ legs looked a little swollen  and red so he was given an ultrasound to check that there was nothing more sinister than just fluid causing this. Unfortunately it was found that he had a large blood clot sitting in his femoral and iliac veins, stopping just below his kidneys. This is a concern as it’s a clot that has possible infection risk that could cause us further issues. He has been started on a treatment of heparin to thin the blood to stop any further clotting happening and hopefully to then allow his body to start to break down this clot over time...

Thomas’ infection markers have come down from 177 to 156. This is good news.

The large rash turned out to be a clot that had formed in his vein that had burst and come to the skin, looking like a large bruise. Hopefully this will fade quickly now it has come to the surface.

He has been having a problem with his blood pressure being low, so one of his heart medications has been stopped. This has caused him to have a few SVT episodes so has been started on a new medication to control his heart rhythm.

Thomas has also had to have his feeds stopped due to him having a few episodes of vomiting all of them back. The dietician will see him and decide how to move forward with this.

Thomas has sepsis 🙁 His infection markers were very high this mourning at 177.

Blood cultures taken showed that his central line going into his right groin is the source of the infection so it has been removed. He also had a central line in his left groin which will be removed once he has a new line put in his neck.

He also has a very large bruise like area that has appeared on his leg. This is thought to be as a rbig suit of a blood clot forming by his central line. He’s been given two types of antibiotic to help with the infection.

We no just need to wait for this to start to clear before making any more progress with his ventilation. Small changes on rate and pressure were made but just to make sure he wasn’t being over ventilated.

Get better soon please Tom!

Upon arrving to see Thomas this morning, we noticed that he did not look very well at all 🙁 He was very blue in the face even though his saturation’s were within range.

His infection markers were increased from yesterday and the nurses think that he is brewing an infection. He has been very unsettled and has had to be sedated.

Henry came to see Thomas again for the first time since he was 2 days old. Pointing at Tom, he said ‘baba’

At 3 this morning, Thomas was turned onto his right side (his bad lung side) and he no longer tolerated his new ventilation settings. He wasn’t able to take any breaths for himself so he had to be out back onto SIMV ventilation, providing the breaths and pressure for him.

He didnt appear to be very happy today, his saturation’s were sitting a little lower than usual, around the low 90s.

He continued fighting the ventilator so was put onto BIPAP mode, breaths and pressure supplied for him.

Not a great day of progress.

More ventilation weaning for Thomas today. His breathing rate was more than halved from 50 to 22 overnight, and he was doing very well.

He was then put on a different mode of ventilation, CPAP, where he was doing all the work for himself and was doing well.

Thomas also had an echocardiogram this evening to check the function of his heart, which was difficult for the cardiologist to carry out due to the extra fluid that he still has going on. The echo will be repeated tomorrow.