Category Tom’s Journey So Far

Thomas had his Broviac line fitted in theatre today. The procedure overall took about two hours, as he was a ‘complex case’. Very Thomas…!

Thomas gained a new friend today called Ollie. His lovely auntie Laurie crocheted the amazing Ollie the Octopus to calm and soothe Thomas, which it doing exactly that.

We came out of isolation today after 17 long days. It is so nice to be back in the cubicle and being able to see what is going on around us!

I also had to consent for Thomas to have a permanent central line called a Broviac line, placed in theatre tomorrow as he has no more access points left due to clotting of both legs (femoral veins) and the calcification of his right jugular. This is a small surgery and will take about an hour.

He was taken for a venogram, where she is injected into his veins and he’s scanned by CT to see where exactly they will place the Broviac.

He also had a chest X-ray which showed that he has a s...

After yesterday’s failed extubation, Thomas was put on a lot of sedation. His Fentanyl was doubled, he was put on Medazilam and he’s been given Rocuronium (muscle relaxant) to paralyse him to make him comply with the ventilator. So he is back onto full ventilation with high pressure and respiratory rate.

I have a few questions about his fail and things that happened yesterday. Thomas was left without any feeds for over 30 hours, which I believe contributed to the failure of his extubation and one of the reasons why he was so feisty.

I also want to know why he was extubated when he showed signs of infection prior to extubation, with a temperature, and why when he was so unsettled for hours before didnit go ahead.

Thomas was extubated this morning at 11am. He had been nil by mouth since 6am and was quite irritated before extubation.

Unfortunately this didn’t stop, and he would not settle. Throughout the day, I stayed with him to try and calm him all day but there was nothing I could do to calm him.

At 5pm it was decided that he was struggling too much and he was too unsettled and needed to be retubed. I asked them to give him one more hour, as I really believed (and still do) that if he would calm down, he would do better.

I came back after handover at 7pm to find him on sipap (a face mask providing some pressure).

He lasted until 5am before being reintubated. This was because he got a sudden spike in his temperature and the drs were worried that he had become septic again...

Another stable day of weaning and preparing Thomas for extubation tomorrow 🙂

You are looking at my first ever hold!!!

Ok, so it was on the bed, but he was in my arms 🙂

Another day of ventilation weaning, and another run on cpap ventilation. A settled day.

A mostly stable day today. His ventilation was weaned back down to low pressures which is where he was before he was extubated yesterday. The drs are planning his next extubation and wanting to have everything perfect before giving him another go.

Thomas was extubated to optiflow this morning at 11am. He did well for a few hours and then appeared to be working too hard.

He was given a second chance on a nasal cpap ventilation however after another 3 hours was working too hard again, so was reintubated 🙁

It was decided not to extubate Thomas today as he tested positive for having RSV.

A PCR was sent off to see if there was anything else that he was growing so we will just have to await the results of it.

Happy one month old Thomas!

Today started off with a blood transfusion due to low haemogobin numbers.  This is a number that we are always chasing and topping up due to the amount of blood that Thomas has taken everyday for cultures, blood gases and other tests.

We don’t have any results through yet to know if he had a non haemolytic transfusion reaction, but the general thought is that it is more ventilator related than blood or clot.

Thomas had a bronchoscope performed today. I was able to watch this procedure which I was very pleased about as I was able to see a huge difference between pre and post surgery.

Thomas’ consultant told me that he was ‘pleasantly surprised’ with the his results and the dr overseeing the scope also explained that his airways appeared better than they had e...