One Wedding, Two Emergency Trachy Changes and other shennanigans

September 21st dawned bright and sunny and Verna (the night before) and Lizzy, Tommy, Zoë, Dom (during the day) all looked after Massimo so that I could look my best and put the honour into matron of honour. The day went off without a hitch and I’m sure you will all agree that the bride looked absolutely magnificent. Proceedings ended at some early hour of Monday morning and we were grateful for Verna’s presence again that night.

We had a very quiet week with Mum’s best friend coming to visit. Dad arrived from Nigeria on Sunday and he was very sick. We took him straight to A&E and he was operated upon on Sunday night. He then spent the next four days in ITU (or GICU – grown up intensive care – as Justin called it!). He is now in a ward and recuperating slowly.

Massimo seemed OK on the whole but his breathing was beginning to really worry me as it seemed to becoming noisier and harder to manage and it was reminding me of the run-up to his “episode” when he stopped breathing on the ward. Just like before his secretions were copious and the hyoscine patches that we use seemed to have little effect in drying them to a manageable state. So we started adding lots and lots of small bits until eventually he would suddenly go very dry and we would have to give him some saline nebulisers to give him some moisture. I remembered that when Massimo went to PICU following his episode, T. had given him a lot of physiotherapy and had released and removed lots of very sticky secretions from quite far down in his lungs. With this in mind, I called the paediatric physiotherapists to see if they could meet us and help with the situation. I saw them on Tuesday 30th September and we had a very good and informative chat. Due to Massimo’s wheeze, which he seems to have on and off most of the time, but which is very mild, they were unwilling to give him percussion, which is the most straightforward physio that you can have for releasing secretions, as this is can have the side-effect of creating or worsening a wheeze. Massimo was due to have his post-1st cycle of chemo MRI scan and micro laryngal bronchoscopy on the following day, so we agreed that nothing would be done immediately but that the physiotherapist(s) would assist at the procedure and they would also contact Dr Crowley (Massimo’s doctor and a respiratory specialist) to discuss things further.

At home that night, Verna came to look after Massimo overnight, however at around 1.00 am she called us in a panic as he had become very upset and agitated and had gone quite a horrid colour. We came down and I immediately picked him up to see if the mother’s touch would help to settle him. Verna had put him on oxygen (We have lots of it in the house for Mum and it is difficult not to use it when necessary) and this did not seem to make any difference. We discussed doing a trachy change but felt that as he was settling slowly in my arms and he was due to have one the following morning, it seemed cruel to put him through an extra one. At this point Justin looked at the tank and on settling it back down on the floor saw the gauge drop to zero. The tank had been empty and Massimo had not been getting ANY oxygen at all! We got another tank ready just in case and everyone went back to bed, but I stayed just a little longer to see how his saturation levels fared and to make sure he had recovered. Verna and I noticed that his levels fluctuated quite badly depending on his position. The best position for him was with me sitting up straight and holding him on my left arm, slightly raised above the armrest of the armchair. A totally impractical position to hold for any length of time. With the aid of various cushions and blankets we tried to place Massimo on the cushions but he kept slipping that half a centimetre that plummeted his saturation levels. I looked at Verna, she looked at me, we both said trachy change! I called J, we gave Max some codeine, we got organised and ready, totally calmly and placed Massimo on the changing mat for the trachy change. Max was fast asleep, we removed one tube, he flinched, we inserted the other, he cried, we cooed, he fell straight back to sleep again and his breathing was instantly better. On that note and at about 2.30 am or later, we went back to bed, leaving the little chap in Verna’s capable hands. When Justin took over in the morning, Verna told him that she had been using the oxygen on and off as Massimo had been having trouble maintaining his oxygen levels. By the time we were ready to go into hospital, I was keeping Massimo on oxygen constantly. We went to SGH with a huge oxygen tank in the car as all the little portable tanks were empty. When we parked up outside the Lanesborough Wing, one of the PICU nurses was walking by and she was a star and accompanied us up to Nicholls Ward (paediatric surgical – the only ward we haven’t been in up to now!). As the tank was so big, we actually went up without oxygen so it was nice to have an experienced nurse with us! We all walked in and L. went up to the nurses desk and very gently but firmly demanded oxygen and suction for Max. We were installed within seconds!

Unfortunately we were told in our letter from the hospital confirming the MRI and MLB that Massimo could have a light breakfast before 7 am so this is what we did. However, he was scheduled to go under general anaesthetic at 10 am for which he should have been starved for 5 hours. Everything had to be reorganised which was a major pain for all concerned. It had taken so long to organise everything in the first place that Mr Daya could not believe it had to be rearranged. All doctors concerned were absolutely lovely and they all helped out and Massimo went down for his MRI scan at 11.30, followed by the MLB in theatre afterwards, done by Lisa Pitkin instead of Mr Daya himself as he had to go off to a meeting. The initial results of the MRI/MLB are that the tumour has grown and that there is nothing else of note in his upper airway. We were expecting to be told that the tumour had grown as the first 8 weeks of the chemo slow and then stop the growth of the tumour. Any regression in the tumour will not be visible until after the second cycle of 10 weeks of chemo which we will be starting on Monday 13th October and ending just before Christmas.

During theatre Massimo’s carbon dioxide levels were rising and the doctors decided that he should spend at least 24 hours in PICU being monitored and being weaned off the ventilator slowly. In fact by that evening he was off the venilator, on CPAP, then off CPAP and just on 2 litres of oxygen. The next day they decided to transfer him back to Nicholls ward and this happened late in the evening. I stayed with him that night and the following morning we were discharged. However as far as his breathing is concerned we arranged that we should have a good conversation with Dr Crowley and go through the history of what had been happening so that we could make a plan of action to see if we could get to the bottom of the problem. Helen, Massimo’s community nurse, organised for us to meet Dr Crowley on Saturday at 3 pm. This we did and the conclusion of the conversation was that a bronchoscopy of his lower airway needs to be done and it might be that Massimo needs some CPAP support, at least for now.

That night Verna came to look after Max again (she is SO unlucky) and very early on Massimo went blue and it looked as though there was a blockage in his tube or airway and that he was really trying to suck the air in. We did an emergency trachy tube change so fast that I couldn’t believe it was over so quickly. Max’s breathing settled immediately, just like last time, and again like last time there was nothing in the tube that we removed, no blockage or anything. Verna had a peaceful night after that although Massimo’s saturation levels did keep dropping periodically but they would pick up again immediately. I called Dr Crowley to let her know what had happened and she decided that we really couldn’t keep going on at home with all these blue episodes and that it was best to bring him in to PICU for a trial on CPAP and for close monitoring. Massimo was back in PICU at around 6 pm on Sunday night. At 8.50 pm, having been on CPAP for about half an hour he had another really bad blue episode. T. was there and yet again worked hard to get horrid, gluey, sticky secretions out of his airway, but obviously only once she and Massimo’s nurse had stabilised him. Since then, they have decided to take him off CPAP as he seemed much more unsettled with it than without it and has had no further episodes. A bronchoscopy has been organised for tomorrow lunchtime and we will have to see what that shows up.

That is all the medical stuff, now for the more personal stuff about Massimo and an explanation of a few of the photos. Of course the first picture is of Lisa and Phil with the rabbi that married them. Doesn’t she just look gorgeous? The next photo down shows you that Massimo has learnt to hold his head! He is much later in this than his contemporaries, but he’s had to cope with a much larger head than they have. Other things he has learnt to do include shaking a rattle, pulling my hair and hitting me! His top teeth look as though they are getting ready to come through and yes his top teeth not the more usual bottom teeth first – Max never does things the usual way! As you can all see he has grown quite a lot recently and I’ve had to do a complete wardrobe change to accommodate his larger self. Everyone says he doesn’t look like a prem baby any more, and I can say that at nearly 8 kilos (17 lbs 10 ozs) I can’t carry him for long! The next two pictures are of Massimo having a deep and contented nap in his respite nurse Annette’s arms. I was very pleased to see her on Friday morning when I came back from the hospital as I hadn’t had much sleep that night and it was nice to just hand him over. As you can see he was more than happy with that arrangement! Last but not least, Jasper and Horace do believe that they are human and are entitled to a seat at the dining room table!