Month: June 2004

Today was the day we had been waiting for. Having got through the day I think we can safely say that it is on a par with all of our bad days, except that particular day in February at GOS.

Massimo was second on the list for theatre and between one thing and another he didn’t go until probably around 10.45 am. I was expecting Mr Daya to have a good look and to put in a longer trachy tube and really not much more. I’m not sure what J was expecting. Mr Daya, however had different ideas. I/we don’t know whether this was due to what he found, or whether he had planned it. To be fair, I think I should have had an inkling that he wanted to do more as he had previously said that he wanted to take a decent biopsy sample as this hadn’t been done since he took one in June last year. What he did in the end was take a biopsy from the back of Massimo’s throat, another one from the posterior wall and another from the anterior wall of Massimo’s trachea. Whether either of these last two samples were tumour or granuloma we will only know when we get the results back from pathology, but it seemed to Mr Daya that they were very hard scar tissue, which is what the myofibroma is. The trachy tube was also changed for a thinner but longer one. Continue reading “The Bronchoscopy”

Massimo is still in PICU. On Thursday we were told that we could bring him home during the day if we wanted to. So he came home for a few happy hours and I took him back at 7.30 pm (yes, I missed the beginning of the match, J stayed at home to watch it!). I got him ready for bed and by the time I left at 8.20 pm he was fast asleep. Friday was a day when I was due to have respite and I had organised to go to the hairdressers and then to meet a friend for lunch. I therefore arranged with Annette that we would pick Massimo up from PICU together and then she would stay at home with him. Unfortunately he hadn’t slept well that night and he was very tired, so he actually slept nearly all the time he was with Annette, and as he was asleep his breathing was really not good at all. Annette ended up holding him on her lap and pushing his trachy in for nearly 3 hours on the trot. Her left arm went blue due to lack of blood flow and the fingers on her right hand had quite marked dents where she had been holding on to the trachy. She gave him to me just before he left and Massimo got agitated and a little blue. Luckily J was on hand as he is very calm and very good at positioning the trachy well. After Annette left, Massimo woke up and was bright and happy and gorgeous! Continue reading “Still in PICU”

After Massimo’s fabulous day at Christopher’s we had a fairly unsettled night with him getting upset in his sleep and his breathing being very wheezy. On top of this he has now developed an impressive double chin which makes keeping his oxygen on at night rather difficult as it pops off easily as he moves around in his sleep. Without his oxygen at night his oxygen levels drop, the monitor goes off, and up we get fumbling to put it back on in the dark. Morning comes and Massimo is bright as a button whilst J and I are looking a little worn around the edges! Saturday was actually our 5th wedding anniversary and we left Max in capable hands whilst we went off for a nice lunch at Chez Bruce. Massimo had a lovely day and smiled at all and sundry. That evening when we went up to say a last goodnight before going to bed, Verna was already looking after him, he started getting very upset (but not opening his eyes) and began to find it VERY difficult to breathe. His increasing inability to breathe meant he began to panic and go blue around the edges. We increased his oxygen and I picked him up for a cuddle but nothing seemed to help him until J held his tracheostomy tube and pushed it down really quite hard. We have used this tactic before and it seems to push something out of the way and enable him to breathe much more easily. He calmed down immediately and we went to bed. He repeated this performance for Verna about four times in the night. Continue reading “Unsettled nights over the weekend”

We went to Christopher’s today, where Massimo had a grand old time playing in the little chair and table they have there, then we went swimming and then we did some messy play and we made a card for father’s day. But best of all we managed to get purple paint (in Lizzy’s honour) absolutely everywhere! The last picture is of Max in a hoist. If he continues to grow at his current rate we might need one of these at home. We also weighed him, in the hoist, and he now weighs 13.3 kgs (29 lbs 5 oz or 2 stone 1 lb 5 oz). No wonder we are beginning to struggle when we pick him up!

Since my last entry we have been fairly busy, within the limits of my now pregnant (and therefore tired) state! Wednesday 2nd June was a quiet day at home, with just a quick trip up to Balham for a breath of fresh air. Thursday heralded the arrival of Charlie and Sadie our good friends who decided to leave London last year and bought themselves a derelict castle in Scotland to move into (www.dunanscastle.blog-city.com)! They arrived with their new(ish) 5 month old baby daughter Harriet and I’m sure you will all agree she is a little beauty! It was very interesting to watch the reactions of the dogs and Massimo to the arrival of a little baby who cries, and LOUDLY! The three of them were all stunned, but soon got used to it, and in fairness she didn’t cry very much at all! Claire, Massimo’s respite nurse, arrived at about the same time as the D-Ss, so Sadie and I went running out the door for a little shopping and a cup of tea. The evening was spent extremely companionably, and the children were extremely good that night for us. Continue reading “Marwell Zoo, Christopher’s, Portage and more!”

On Saturday night, by 10.30 pm we were on our way home from the airport, Max fast asleep in his car seat, Verna waiting for us at home. We got in, Verna put Max to bed and we unloaded the car and had a cup of tea. When we finally went up to bed, we’d heard Max’s alarm had been going off quite regularly and as I walked into his room I asked “are we calling an ambulance?”. I was only joking, but in fact Max had spiked a temperature and his heart rate was getting higher and higher. When it hit 217 we also realised that he was leaking all his milk, and therefore also his ibuprofen and chloral hydrate (sedative) and that we were unable to calm him down at all. Also he was so upset that he was putting so much pressure on his gastrostomy that we thought it would pop out! We called an ambulance and in A&E they gave him a paracetamol suppository (or two!) and by the time they took effect the crisis was over. We did however leave him in overnight to say hello to the nurses as we suspected that was what he really wanted. He is on another course of antibiotics, but seems really rather well in himself now.
Continue reading “Home and straight to PICU!”