Massimo's story

This morning we trotted off to Sutton Hospital Eye Unit. We left really early giving ourselves 1 hour and 15 minutes to get there. Armed with address and A to Z we set off only to find that it wasn’t listed in the A to Z and ended up getting to St Helier Hospital before getting an answer from the switchboard with directions on how to get there. I mention all of this as we had received not one tiny piece of useful information on how to find the hospital, even the road that it is on isn’t listed – but the big one which will get you there is not mentioned either. On top of which Sutton County Council need to do something about their total lack of signposts and where we did see signposts they were usually cleverly hidden behind traffic lights!
Continue reading “The Opthalmologist Appointment”

Massimo was discharged from St George’s this morning and except for another 3 doses of antibiotics to finish off the prescription and some special cream for his trachy hole (stoma) which is looking very red and sore, he is back to himself.

The dogs were excited to see him and I am overjoyed to be home. The beds they provide for mums are foldaway beds with 2 half mattresses, sooooo uncomfortable, and in order for the nurses to be able to suction Max and feed him in the night for me, I had to sleep with the light on. Not very restful! So now we are back home and back to our own beds and our own routines, perhaps I will get less sleep but at least the sleep I will get will be good!

Tomorrow morning we are off to an appointment with the opthalmologist at Sutton Hospital. We are still trying to rearrange his gastrostomy, microlaryngobronchoscopy and ABR (?!? hearing test to you and me!).

Massimo and I will be staying in tonight too, although the doctors are hoping to discharge us tomorrow. Massimo came off his oxygen last night at 10pm and has been doing really well ever since. His saturation levels and his heart rate were really good … until this morning!

He was on continuous feeds whilst on PICU and on Monday night we started him back on normal feeds but gently so every 2 hours to start with, then yesterday we went on to 3 hourly feeds. This morning at 7 we tried 4 hourly feeds, which basically means larger amounts of milk less often and he got very restless by the end of the meal and his heart rate was high post-feed. So we have decided to remain on 3 hourly feeds for the time being. Also he still has a cough and definitely a cold (his nasal secretions have taken on a rather unpleasant quantity and quality). I was concerned about possible ear ache this morning as he seemed to be fiddling with his right ear a lot and even fell asleep holding on to it. The doctor had a look and saw no infection although again like the cough and cold it is viral and therefore nothing could/can be done about it. I am also getting them to have a look at his throat as J’s throat has got worse in the last couple of days and it would seem logical to think the two are linked. Massimo is getting Calpol to help with these symptoms.
Continue reading “And Another Night!”

Max and Silvs will be staying in tonight for sure – beyond that we don’t really know. He is still on oxygen, so presumably as long as he has a need for it, he will be staying in.

Silvia can again be reached on Patientline with the same number as before: 07046 200076 extension 7724. I am sure she would love to hear from you.

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.

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!