Category Tom’s Journey So Far

Today started with Thomas having a bronchogram. This is a scan done in the CT machine which a dye contrast put into his airways so that the respiratory team were able to get a real time video image of what is actually happening in his airways when he attempts to breathe for himself. The findings were as we expected and not great news for Thomas. It was seen that without being given pressure from the ventilator or hand bagging that he as unable to get air into his lungs due to his airways collapsing as his pulmonary arteries are pressing on his trachea and bronchi.

This is what we already knew from the bronchoscope however had hoped that he would be able to get some air in himself.

After the scan the findings were explained to us and we were told that they would be meeting with cardiology...

Still waiting for a plan for Thomas from cardiology.

He was given a brain scan today, routine scan on newborns checking for bleeding and normal development.  All was fine.

Another day of Alder Hey getting to know Thomas.

Today, he had a Broncoscope, which is a camera that looks down his airways.

I was able to be present for this and saw the extent of the damage caused by his enlarged pulmonary arteries crushing his trachea and bronchi.

Respiratory said that they couldn’t address the airways until the pressure was taken off the,. We are waiting to see what cardiology want to do.

Today started as a a casual morning. Later than usual get up (8am!). Just about to give Henry his breakfast and I got a phone call to say a bed was available at Alder Hey.

I was told there was no rush, and to make my way over to St Mary’s in the next few hours as things wouldn’t be happening quickly as there as the 2hole transport tea, to organize first.

So I thought that I best put some clothes in the wash and pack a bag to get prepared for a few nights away from home.

No sooner than I had put literally every item of clothing that currently fit (9 days after having a baby) in the wash, I got another phone call saying they were leaving within the next half hour.

A mad dash into the hospital, with nothing other than ourselves we arrived to see Thomas be prepared for his move.

The tra...

Another day of waiting. No beds available in Alder Hey. Much of the same as yesterday.

St Mays can no longer do anything to help Thomas in terms of progress forward. It has been decided that he needs to move to the specialist cardiac hospital, Alder Hey in Liverpool. They want this move to happen as soon as possible.

Thomas was proving harder to ventilate and keep stable today and he had a number of pretty scary desaturations, involving one with the emergency alarm being pulled (Mummy was having her own desaturations in the corridor at this point…!).

Alder Hey currently don’t have any beds available on the paediatric intensive care unit.

So we wait…

Today was was a big day for Thomas in terms of getting some answers. He was sent for a CT scan to have a look at his airways yesterday due to some questions over the results of his chest x-rays. The doctors were concerned that his x-rays were showing restricted/no growth of his right lung due to how displaced his heart was to the right because of his hugely enlarged pulmonary arteries.

Unfortanutely their suspicions were correct and it was seen that Thomas has an underdeveloped right lung as his heart is displaced to the right, so it took up the space of the lung during foetal development...

Today Thomas was taken for a CT scan to see what is going on with his airways.

We are just awaiting the results of this which will hopefully come by tomorrow.

A quiet day today. Thomas was kept mostly stable and comfortable while he had an x-ray and some consultations looking at his chest and why he wasn’t able to tolerate being extubate (even if he did decided to do it himself.  Twice..!).

Thomas has shown his determination again today as he really doesn’t like his breathing tube, so he decided to pull it out again in the early hours of the morning. He was tried on cpap again but this time didn’t tolerate it at all and after just 10 minutes, was reintubated.

He had a series of different scans, x-rays and tests looking at his chest and airways to see if they could figure out what was going on as to why he was able to breathe at birth but not able to tolerate coming off the ventilator.

One x-ray has given question about the development of his lungs which will require further investigation. Hopefully some more answers about this in the next couple of days.