Category Tom’s Journey So Far

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.

Thomas had a bit of a rough night last night 🙁 He had a bit of a build up of fluid in his pleural cavity, fluid that was supposed to be coming out through the drains left in his chest. This caused his to desaturate and not come back up as quickly as the doctors would have liked. They assisted the draining of the fluid and Thomas was able to remain more stable and keep his saturation’s up.

His paralysing drug was turned off this morning and he woke up at 10.30am for the first time since surgery!

His ventilation mode was chang3 from bipap (pressure lead) to SIMV (volume lead) to get the right amount of air going in and out. Hopefully this is a step in the right direction in getting him off the ventilator.

Thomas was till in SVT from last night when I went back this morning. After trying everything to get him to self correct, it was decided to give him the adenosine.

I was asked to leave while this happened as apparently it can be very unpleasant to watch. The drug worked immediately with one small dose and he was back in normal rhythm.

He also revived a blood transfusion due to low haemoglobin.

Then was a left to rest for the rest of the day.

In other news, when I popped back over to my room, I was greeted by the most lovely surprise – rainbow heart balloons for my rainbow heart baby! Overwhelmed!!! Thank you so much to the Yates’ and the Pollock’s. You made my day!

Thomas is all zipped up! Took an hour for the surgeons to close his chest and stitch him up.

Aiming for a completely settled day. No interventions or changes just to let him rest. Chest closure is a big deal for him as it changes all the pressures and way his heart and lungs works.

He managed well until 4pm when he dropped his blood pressure and went back into SVT.

The doctors decided to stop his diuretic drugs in an attempt to raise his BP, try cooling him to help with the rhythm and wait to see if he corrects it himself. He hadn’t managed his by the time I left him at 23.30.

Today started off with Thomas having an episode of supra ventricular tachycardia (SVT) at 5.30am. I received a phone call at 7.30 telling me that they needed to give a drug called adenosine to slow his heart rate down as it was at 220bpm. As they were preparing the drug, he corr3xted himself and came back into normal rhythm.

Adenosine works by essentially stopping the heart momentarily so that normal rhythm can start back up. To administer it they need to have the defibrillator and emergency paediatric drug box ready just in case the heart doesn’t correct or in case the bpm drops too low or stops. I was very glad that he didn’t need to have it and self corrected.

The rest of the day was settled and calm.

A generally settled day. Slight adjustments were made to Thomas’ ventilator but another day of rest and repair. We are glad for this as he just needs time to heal.

The aim of today was to let Thomas rest and recover as much as possible.

He had a partial chest closure in the morning but was still too swollen to fully close. He was kept completely paralysed for the day due to his chest still being open and was heavily sedated so he knew nothing about it.

He had some of this painkillers reduced in strength and some of his heart medications stopped.

He also had a kidney scan to check their function following surgery, and all was seen to be well.

SURGERY DAY

After a sleepless night, I made my way to Thomas at 6.30am. He was due to go for surgery at 10 so I wanted to spend as much time as possible with him before he went.

I met with the surgeon, Attilio Lotto, at 7.45 who went through what he planned to do, and the risks associated with the surgery and then the added risks because of Thomas’ age. We were told to expect him to come back with an open chest, and possibly on ECMO (a machine doing the work of his heart and lungs to give them a rest).

So then we waited. He was due to be taken at 10am, however due to an emergency case, he didn’t go in until 12.

Then we spent the next 8 hours waiting, thinking, and feeling sick. The longest, worst 8 hours of my life...