Month: May 2003

Justin has kept you all informed about the various goings on in my absence but obviously due to time constraints he has been giving you more of an overview so I thought I would fill in the details.

As J said, on Tuesday after a pre-op appointment with the ENT Surgeon (and coffee at Starbucks with Katy, Harry (3) and Bessy (15 months)) Massimo and I came home. Massimo was asleep in his car seat but he was bubbly, as though he needed suctioning, so I suctioned him, but he was still bubbly, so I suctioned him again. Nothing seemed to be coming up but Massimo still sounded bubbly and then I noticed that his nostrils were flaring as though he was fighting for breath. I immediately called the Community Children’s Nurses, but I knew that our Community Nurse Helen who is a respiratory specialist was off for the day. I spoke to one of the other nurses and she and another nurse came round asap. I think they were knocking on the door within 15 mins. In the meantime I had been assisting Massimo with his breathing using the ambu-bag (see earlier posting on resuscitation) and I had attached him to the saturation monitor. His oxygen levels were good but he was still obviously working hard to get the oxygen in and the extra help from me was settling him. When Sarah and Emma (I really hope I’ve remembered their names correctly but I wasn’t really in a fit state at the time), the nurses, arrived we changed Massimo’s tracheostomy and he seemed to find breathing much easier. I still wasn’t entirely happy but felt that I had possibly worked myself up into such a state that I was looking for problems rather than appreciating that they had been solved. So the nurses left and I tried to calm both Massimo and myself.
Continue reading “Details”

Massimo was admitted into Paediatric Intensive Care Unit at 5.30 pm today. I am now home (and very tired). There is lots to tell you but I just wanted to say that he is much, much more settled now that he is on CPAP and is definitely in the right place. I will write more and explain everything tomorrow.

Max is moving to the Paediatric Intensive Care Unit. There is a little blood in his trachy tube, probably as a result of too much coughing. He also gets VERY distressed while feeding (and pooing!), so in order to alleviate some of that stress, he is going to be fed by drip which means moving to the ICU.

There is no Patientline terminal in the ICU, so please don’t waste any money calling the number I gave earlier.

Max and Silvs are still in hospital, and it looks as though they may well be there for a few days. Max is still finding it hard to breath so is getting a little oxygen to make things easier.

It is not looking particularly good at the moment for the gastrostomy and airway investigation which are booked in for next Wednesday. We are assuming if he has not fully recovered from the infection by then that the op will have to be delayed. A real shame as it is not helping Max’s swallowing and it is a real pain to deal with for us, so the sooner it goes the better. Fingers crossed that it can still go ahead.

Silvs is needless to say getting quite bored in hospital, so any one feeling particularly flush might like to call her. She has one of these Patientline terminals, and they charge an exorbitant 50p per minute. Her number is 07046 200076 extension 7724. I am sure she would love to hear from you.

This is just a quick note to say that Max is back in hospital. Yesterday afternoon, Silvs became rather worried about his breathing – he seemed to be working very hard just to get enough oxygen.

She called the community nurse, who came quite quickly. They changed his trachy tube straight away which eased things a little, but Max was still struggling. They recommended taking him into Accident and Emergency. From there they admitted him, and Max and Silvs spent last night and all of today in the hospital.

It seems that he has a viral infection which is causing the difficulty, so we are just going to have to wait for him to fight it off. Helen (our community nurse) seemed to think it was unlikely that he would be coming home tomorrow.

Unfortunately his head has put on another growth spurt, so one of the doctors was going to talk to Kate (who has looked after him on the NNU). Nothing further seems to have happened about that at the moment, so we are waiting to see.

Hopefully Max and his Mum will be home soon!

Not much has happened in the last few days and keeping the site updated is becoming quite a challenge! Between Wednesday and Friday Massimo became more fractious and unsetted, then on Thursday we recalculated the amount of Renitidine (antacid) he was on and realised that 0.27 mls was not only a ridiculously small amount, but half what he should have been on and yestarday, the health visitor came and when we weighed him, we realised he had had quite a growth spurt and we both reckon that he had been getting quite hungry! As Massimo can’t tell me when he’s had enough milk I have to be quite strict about measuring and timing his feeds and cannot respond to cries for food as I wouldn’t know how much extra to give. Anyway he is now on 785 mls of milk a day. Between the extra antacid and extra milk he has gone back to being the little angel we know he can be. He now weighs 4.37 kgs (9 lbs 10 oz).
Continue reading “More ramblings”

We survived our first day alone really rather well. Actually, if you had asked me before 6.30 pm I would have said that our day was very successful. I had not planned to achieve anything other than getting through the day but Massimo was a star and I achieved lots of little things that I was very proud of! I managed to wash and sterilise all his (and my) bits and pieces, make our beds, put on a load of washing, hand it out to dry and bring it in, and empty the dishwasher. As I said, nothing earth shattering but achievements nonetheless.

THEN! At around 6.30 pm I was cuddling Massimo and I got up and unfortunately as it was hot, Massimo’s ng tube stuck to my arm whilst I moved him. The tube was out in a flash and another trip to St George’s was required. This time he screamed more than ever and the nurses and I had a very difficult time double-checking that the tube was in the right place, so I ended up giving him half his feed at the hospital using SMA, just to reassure everyone, myself included! I was disproportionately upset by the turn in events, never mind!

Today we went spent the day down in Hampshire at Grandpa and Mal’s. Herewith some pictures for your delectation. Those of you with sharp eyesight might notice Massimo’s lack of ng tube in some of the pictures. Unfortunately Massimo had a coughing fit at around 4 pm and coughed up his tube. (The nurses in St George’s Paediatric Ward kindly put it back in for him in time for his 7 pm feed.)

Massimo, was wide awake all afternoon and was fascinated by all that was going on around him. Meanwhile J and I enjoyed a delicious roast lunch!

Today was spent getting some DIY done around the house by J, whilst I took Massimo and the boys for a walk. Thanks to Justin we now have curtains in the dining room, coat hooks in the hall (finally the hat stand has gone!), a garden armchair in the garden, a mowed lawn and a new rug in the living room. I, on the other hand, had a successful walk – successful in so far as we all survived it intact – where we met Jo and her two cocker spaniels, Boo and Jake. We had a lovely chat walking around the common and were only cut short by Massimo’s need for his next meal.

In the evening, we went off to indulge in my favourite passtime, eating Italian food, at Bucci’s restaurant. Davide, the manager and friend, put us on a corner table by the window so that Massimo would be protected to a certain extent from any smoking, but there was in fact very little. We had a lovely meal and Massimo slept throughout even though it did get VERY noisy!

Just a quick entry to let you know that the medication for the reflux seems to be working wonders. Massimo has been a lot more settled today and his coughing has settled down dramatically. This morning he spent a good hour lying on his activity mat happily staring up at the various toys on there. Every now and then I would change position for him so he would see something different, but he seemed very happy. After an initial sniff around, the dogs left him in peace too!

Today was J’s birthday and we had organised to go out for lunch with friends of ours, Tommy and Lizzy – Tommy also happens to be the editor at the Fresh Produce Journal, but more importantly it was also Lizzy’s birthday. We had booked a table at Chez Bruce, a rather smart local restaurant. A lovely meal was had by all and, apart from a few grizzly moments, Massimo was the perfect 5th guest at the table. So we are venturing out more and more and doing as many normal things as possible. Unfortunately J returns to work on Tuesday and we will have to see how I cope alone. In order to hit the ground running I have already arranged to meet two other ex-NNU mums for lunch on Wednesday – no need to hang around now is there?

Today we went to our appointment at Great Ormond Street hospital (aka GOSH). The appointment was at 11.45 and I decided that we should leave the house at 10 am, primarily because we are ALWAYS running late and I figured that if we aimed for 10 am we might actually get there on time! Well, we didn’t leave the house until about twenty to eleven and managed to take a fair time getting there as we firstly took Westminster bridge instead of Waterloo bridge, then we encountered traffic near Downing Street, so doubled back onto the Embankment and turned left a little further up, then we went round in circles in the one way system near the hospital, finally drawing up by the entrance a little after half past eleven. J dropped Massimo and I off and went to park the car. I think Max and I made it dead on time. Kathy (a colleague of Justin’s) was also due to be at GOSH this morning with her son Leo, and as they had finished she came up to the 4th floor to find us – she was already there when we got there – but alas, and amazingly enough, the doctor was ready and waiting for us, we were ushered straight in. I managed to have the briefest word with Kathy, but apparently she was as pleased as punch to have finally met Massimo after hearing so much about him.

The Bulbar EMG was rather a painful affair for the little chap. At first it seemed to be simply some sort of stimulation of the nerves of first his legs then his arms, and a computer was measuring the reaction. Then came the facial bit. For the face he stuck a long thin needle first into Massimo’s double chin, then into his cheek at two different points and then he decided to do the double chin again. At this point Massimo justifiably wailed. It was all over by 12.10. Unfortunately the doctor gave us no indication of his findings and we have to wait for him to write the report and post it back to the NNU at St. George’s.
Continue reading “GOSH and NNU”

Monday was spent just at home recovering from a fairly bad night as Massimo needed suctioning every 20 minutes. Tatie Lucy and Georgie popped in in the afternoon for a cuddle (and to measure up for curtains!). Tuesday we successfully did our first trachy change at home under supervision, and went for a lovely blustery walk in the afternoon.

Wednesday we were very brave and embarked on a major family outing, going to IKEA, Mothercare and Pets-at-Home. Max slept throughout the entire proceedings, only getting grizzly on the last leg of the trip home.

This morning after his 7 o’clock feed, Massimo had a major coughing fit and expelled his ng tube (tube in his nose for feeding). Luckily as his next feed wasn’t due until 11, there was plenty of time for Helen to come around and refit it. Sister Theresa Alexander from the NNU also came around and weighed him. He now weighs 4.06 Kg (8lb 15 in olde englishe units). She also measured his head which has grown too much again. There are possibly a couple of other symptoms of concern that Theresa reported to Kate, one of the consultants at the NNU, who suggested we come into the unit tomorrow for a check up. We have an appointment at Gt Ormond Street tomorrow, so not sure if we will make it to the NNU tomorrow or not. Our appointment at GOS is for a Bulbar EMG, which is some sort of nerve conductance test to see what is happening with his swallowing.

That’s all for now, I will try to report on the Bulbar EMG over the weekend.