Month: May 2003

Massimo was very settled overnight and the only thing to report is that he managed to remove the canula that was in his foot. A canula is that thing nurses insist on inserting into your vein so that they can have quick and easy access to your blood at all times. Massimo’s was in his foot and all bandaged up and nobody knows how he managed to get it out!

This morning at 9 am Massimo came off CPAP and at around 4 pm they needed a bed in PICU and decided that he could be transferred to one of the other wards. 15 minutes later Massimo started wheezing and working hard at his breathing again so they gave him some Salbutamol nebuliser and put him back on CPAP and decided to keep him where he was.

We went to see him and he was awake for some of the time, although with all this heavy breathing he does get very tired. He is doing really well. I have just spoken to the nurse and he is fast asleep and breathing well, albeit still on CPAP. They will probably try to take him off again in the morning.

Amongst all the shenanigans today, I came down the stairs carrying a tray and stepped on a box that was on the stairs to bring upstairs. I give you the evidence of my pain. (It isn’t a pretty sight!)

Massimo has been referred to a neurosurgeon at Great Ormond Street to review his hydrocephalus. The original letter went some time ago and when we went for our follow up appointment on Tuesday the doctor we saw, Tony Williams, made it his business to chase up a few things, and the lack of response from GOS coupled with Massimo’s new head measurement of 44 cms, put this at the top of his list. He chatted with Kate (NNU doctor who had originally referred him) and between them they discovered that the doctor that Kate had written to is on holiday, so they wrote another letter to another neurosurgeon and faxed it across yesterday.
Continue reading “Great Ormond Street II”

All has been well in the Hope-Mason household since Massimo came home, until last night. A little background first though. On Massimo’s penultimate day at the hospital Helen and I noticed a little granulation (excess skin growth) around his tracheostomy stoma (hole). It was also quite red and sore and a cream was prescribed to help clear it up. This granulation can cause difficulties when doing the routine changing of his tracheostomy tube so we decided it was best to do the change with Helen here. I did the tracheostomy tube change last Friday with Helen (J was at the office) and although it was difficult it wasn’t as straight-forward as it has been. We decided to do this week’s tube change with Helen again and this was planned for yesterday afternoon. When we had a close look at the stoma prior to the change we noticed that the granulation had got worse and that it implied a complications could arise during the tube change. Helen and I made the decision to postpone the change until we could get Massimo seen by one of the ENT team from St George’s (preferably one of the two paediatric ENT guys) and take it from there. So today I was supposed to be going to SGH anyway. Things didn’t quite go as planned of course, Massimo is good at keeping us all on our toes!
Continue reading “Back in PICU”

This morning, Massimo and I spent it at the Children’s Clinic in St George’s Hospital (from now on to be referred to as SGH!). Our appointment was at 9.20 and we left SGH at 12.10.

Massimo passed his hearing test (in both ears) and was weighed (5 kgs, or 11 lbs) and measured (sorry can’t remember!). All well, except his head now measures 44 cms.

The doctor is happy with everything else and will chase up the MLB (micro-laryngo-bronchoscopy) and gastrostomy and the appointment with the neurosurgeon at GOS.

Last night we had our first night of respite care and Verna was an absolute gem. She arrived on the dot of 10.30 pm and looked after Massimo until we wheeled him back into our bedroom at 8 am (I never realised how useful those wheels were going to be!). J and I slept like babies!

Today we met Lisa and Phil at La Rueda restaurant to check it out as a possible venue for Lisa’s hen night. We had a lovely lunch and as the picture shows, Massimo was more than happy to be cuddled by Lisa!

Verna is back again tonight so plenty of zzzzzs in store for us. A good night’s uninterrupted sleep does wonders for the production of milk so maybe I’ll manage to keep it all going for a little while longer.

It has been a while since we have posted any pictures so here are a few. There is Massimo on his Activity Mat and Massimo with Kamila.

Thank you to Aunty Amanda and family for the lovely baby gro and for the attache-sucette (which has been a great success!).

Hope you like them.

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.