One thing I forgot to say in my last entry is that Massimo’s oxygen levels kept dropping yesterday, not for long, but he was going a little grey around the edges and the nurse was bagging him and giving him extra oxygen. This is something that happened two or three times which I witnessed, but it shows that our brains absorb more than we actually process until we are ready to accept it and deal with it. This morning when I called the unit they told me that his oxygen requirement had gone up and down during the night and it triggered the memory of yesterday. Also I was told that his breathing had become very bad again. He was recessing (breathing in hard so that his ribs show) really badly and had been most of the morning. The doctors decided to do the bronchoscopy today.
When I went in this afternoon, I cuddled him again and he looked very tired and his breathing was really very bad. The doctor (Emma) came to talk to me and she explained that she wanted to put him on the ventilator to see if it could help his breathing. She put him on a low setting and there was no visible difference but as I held him he became very pale, nearly blue, and they had put his oxygen up to 100% and he was saturating (oxygen level in his blood) at 100%. The nurse did a blood gas (checked his carbon dioxide levels in his blood) and they were too high, so they increased the ventilation and his colour did come back.
Massimo was due to go to theatre at 4.30 for a (fixed) bronchoscopy. Unfortunately he was fed at 1.30 and the rule is that breast-fed babies should not eat for 4 hours before going into theatre. They were therefore unwilling to take him to theatre. However the doctors from PICU managed to encourage the ENT surgeon to come to PICU and do a flexible bronchoscopy instead.
They gave Massimo some morphine and a little anaesthetic and they looked down his tube. I was invited to come and have a look too – scary! Basically he has an inflammation just at the bottom of his tracheostomy tube which is closing off some of the tube. As the tube is plastic it moves according to Massimo’s position so sometimes it obstructed more than at others, which explains why his health seems to have been yo-yo-ing this last week. In order to solve the problem they have replace his neonatal tracheostomy tube with a slightly longer paediatric one so that it goes beyond the inflammation which will eventually go away on its own.
They also looked further down in his lungs and found that he has a bronchomalacia on his left lung. This means that the main bronchus on his left lung has a similar narrowing to that found in his trachea. He will grow out of this condition however it will affect the management of any further breathing problems.
Lastly, they looked at his stoma which is still not looking brilliant. They did some further cauterising and also sent some granulation off to the labs for analysis.
After all of that, Massimo is finally breathing properly again. He is still on the ventilator and they have sedated him tonight so that he can get a really good night’s sleep as today was very tiring and he hasn’t really slept properly all this time as he has been working so hard on his breathing. So he is settled and happy at the moment. The doctors are going to make a decision on what the next step is once they have reassessed him after 24 hours with his new tube and if all is well they will send him off to GOS probably on Sunday, hopefully with surgery in mind on Monday. If all is not well, they will decide to do the fixed bronchoscopy tomorrow afternoon to see if there is anything else going on which is causing all this distress.
A last note on his little bottom. I had a chat with my sister whose little boy Matteo has also had fissures in his bottom and apparently it has nothing to do with hard stools but with the elasticity of the skin and that the only thing that can be done to help is applying almond oil at every nappy change. Emma (the doctor) was unimpressed that I arrived today with olive oil instead and joked that I should mention it on here!