Category Tom’s Journey So Far

Thomas was weaned down to CPAP today so is doing all the breathing for himself, just having pressure assistance.

This is really good as he hasn’t been at this stage for a little while now!

Nonother changes today.

2 months old today! 61 days in PICU

A day of gentle ventilation weaning for Thomas.

Thanks to a wonderful ANP, I got my Christmas wish!

Words cannot tell you how much this meant to me 🙂

Merry Christmas!!

We arrived this morning to see that Father Christmas had visited Thomas and left him a massive sack of presents 🙂

He was dressed in his Christmas shirt and we opened his presents with him. He opened his eyes to have a quick look, but was obviously too exhausted from his late night last night, where he’s managed to make Dan and I a Christmas card with his footprints and handprints on 💙.

Not much went on today – vent changes and sedation weaning. A settled day 🙂

ICU at Christmas is not where anyone wants to be, however a lot of effort had been put into making the day special for the children, parents and nurses.

Nurses and sisters all had festive scrub tops, the children all had their sheets changed over night to have Christmas sheets put on (most of the child...

Extubation day…!

Unfortunately Thomas had other ideas…! Extubation has had to be postponed as he was not a happy boy this morning.

Thomas has been on sedation medication, fentanyl, since day 13 when he came back from OHS. He is highly dependent on it and has a weaning regime to try and get him off it as it’s an opioid drug. Unfortunately he’s been hitting his tolerance levels with weaning and this morning, well and truely fell off his perch.

He has had to have his ventilation increased to calm him and his fentanyl increased to keep him comfortable.

Hopefully will be able to wean ventilation back down and plan to extubate again in the next few days.

Today has been a bit of a backwards step.

Thomas is being prepped for extubation tomorrow. He’s been given a blood transfusion, has worked his way down to low ventilation pressures and has been on cpap for over 24 hours.

He has been very settled all day and has enjoyed watching some baby tv on YouTube!

Fingers crossed for extubation attempt 3 tomorrow. We need it to be successful as we will have to start exploring the possibility of long term ventilation after tomorrow if it’s not.

Quiet, comfortable day. Thomas is getting excited for Christmas 🙂

Surgery day. Thomas went for surgery for ‘thoracotomy for plication of diaphragm due to palsy’. He was in theatre for 2hrs 45minutes and it went well.

The next few days will be about letting him recover and recouperate, and where possible will begin to wean his ventilaton again.

Today has been a stressful one in terms of planning for coming off ventilation.

The day started with the plan to extubate Thomas. He was started as nil by mouth from 6am ready to extubate at 10am. After a lot of waiting around, it was decided at 3pm that he wouldn’t be extubated today so was started back on his feeds again.

At 4pm, his consultant came to give me the findings of the bronchogram, where she told me that unfortunately Thomas has suffered from something called ‘diaphragmatic palsy’ where basically his phrenic nerve running to his diaphragm was accidentally ‘nicked’ during his heart surgery, causing the left side of his diaphragm to become paralysed. This can only be corrected in surgery, called a diaphragmatic plication, so I consented for him to have this.

They have...

Another day, another test. Thomas went back to radiology today for a bronchogram to look further at his airways and how they are functioning to see why he has now had two failed extubations.

Mother than that, he had a quiet day. We’re just awaiting the results of the bronchogram.