Author: Silvia

During doctor’s rounds this morning it was decided that Massimo would be discharged from PICU and returned to Frederick Hewitt ward (Paediatric medical ward – as opposed to surgical, isolation or intensive care) but this did not happen until after nurse hand-over this evening as they needed to organise an extra nurse to cover for his needs. Massimo went back to the 5th floor this evening at around 9.30pm. I hope that we will both be out tomorrow but we shall have to see, we might be in for another night.

Surgery on Wednesday has been cancelled.

J will update you with a Patientline number later on this evening.

Massimo came off CPAP this afternoon at 1 pm. He has been breathing well on his own since then although they still have him on a smidgen of oxygen. Assuming all goes well tonight I would be surprised if they did not discharge him from PICU tomorrow, however whether that will mean coming home or returning to the paediatric ward I don’t know. All will be decided by the doctors during rounds tomorrow morning.

Above all, even though he is still a little puffy, Massimo is back to being his normal self.

This morning during doctor’s rounds it was decided that Massimo would stay on CPAP for the time being as his heart rate was still high indicating that he is still struggling with his breathing. He is also on just a little oxygen: 25% oxygen where 21% is air. He was settled and happy.

When we went to see him this afternoon his heart rate had calmed down and was practically at normal levels. They have reduced the amount of fluids they have given him (now 80% of maintenance levels – or some such medical wording) and his puffiness has reduced dramatically. He still looks a little bloated but he now resembles our little boy.

This evening I read to him (Eoin Colfer’s new book) and he settled and fell asleep happily by the time I left at 8 pm. That is all the news for now.

We went to see Massimo this afternoon. He seems to have become very bloated or puffy. It is assumed that this is just a side-effect of lying on a hospital bed for three days and the fact that they have given him lots of fluids. They have done a bunch of tests: blood, urine, lumbar puncture (!), secretions from his nose, secretions from his tracheostomy, swab from his stoma (the trachy hole) and these are just the ones I remember! So far nothing has shown up but as the head nurse (Debbie) said, he just isn’t right and they really want to find out what is causing the problems. His “not right” is a reflection of my initial feeling but now we can also say that his heart rate is too high (it is still in the 170s at rest), his breathing is arduous and needs assistance, his carbon dioxide levels were too high when left to breathe on his own, he is tired, too tired. Also, his dry skin over his eyes has recently got a lot worse. It is a form of cradle cap and recently it had become drier. Since we went to hospital it has started looking red and angry and very flaky and dry.

Although they think Massimo has a viral infection (eg a cough or cold) there is no actual evidence to support this however I do think they are right. I have had a bit of a sore throat but it didn’t materialise into anything and J is currently feeling a bit under the weather: headache, sore throat, run down.

They started Massimo on a course of antibiotics this evening just to help fight something bacterial if it is there.

Kate Farrer, the Neonatologist Consultant that was looking after Massimo in the NNU, came across to the PICU to see if she could add anything to what had already been done and looked at. It was lovely to see her and nice to have someone who knows Massimo so well give his current difficulties the once-over.

There is no way of knowing, at this stage, how long he will be in PICU nor whether this setback will cancel Wednesday’s gastrostomy and micro-laryngo-bronchoscopy. We (they) will have a better idea after the weekend.

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.

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.

(Apologies for the ironing board in the background in the one on the left!) Please note the hand knitted cardigan made for Massimo by Ann with moral support from Lucy and Charlie (cavalier spaniels!), the stripy Gap outfit from Lisa in the Big Apple and the bootees from Tara. Thank you all!

Today we ventured forth to the park with the beasties and all went well. Unfortunately there is no photographic evidence of this but the dogs certainly enjoyed themselves. It did prove that there really is no reason for me not to take everyone out for a bit of fresh air and I hope to start doing so soon. However will enjoy having J come with me this week!