Massimo's story

Today we all went to the Freddie Hewitt Ward, with Massimo starved since 5 am. We were there by 7.50 am but, other than signing the consent form, nothing happened until 11.30 am when we took him down to the MR Unit. Again, I was allowed to cuddle him whilst he went to sleep and he did the most impressive wriggle before going off, lifting his legs and bottom right off the bed and jiving with his arms, it was really cute!

During the scan J and I had sandwiches and strong coffee and an hour later we went to the recovery room where we found a very upset little boy. A kiss, cuddle and dummy later he did start to settle. We returned to the ward, with me in a wheelchair cuddling the wee man. Back in our cubicle we realised that Massimo’s saturation levels (oxygen levels in his blood) were not bad but not really as high as they usually are, so we gave him just a little oxygen for a couple of hours.
Continue reading “MRI scan”

On Friday we had an appointment with Dr McGowan whose area of expertise is Child Development. Although J and I are both very pleased with Massimo’s various achievements, his smiling, his playing with his hands, his finding his face etc we know that we are doting parents and certainly not impartial observers. Dr McGowan basically told us that as far as she can see Massimo is developping normally and that there is nothing she can add to what we are obviously doing already and that she will see us again in 3 months time! Isn’t our little boy just a little star?!?

This weekend Uncle Toio and Leanne came to stay and we had a very relaxed and fun time. Today we had our first lot of day respite care and Lara looked after Massimo from 11 am to 4 pm. I was unsure of what to do with myself and felt quite out of sorts but luckily two other Neonatal Unit mums suggested meeting for lunch and that helped getting through the worst of the worrying! I came back to find Massimo had had a great afternoon and did not seem to have missed me at all.

Tomorrow at sparrow’s fart we are off to St George’s for the MRI scan. We probably won’t have the results until Wednesday (if we get them that quickly) but I will update you as soon as we have any news. Both J and I are feeling quite anxious about what the scan will reveal but until we know it is pointless to speculate.

On Sunday the whole family went off to Wimbledon Common for a lovely long walk. It was a beautiful day and we all enjoyed the fresh air. Massimo was awake some of the time and we think he enjoyed the view. At one point we got him out of the buggy for a good look around as you can see in the picture. (Thank you Mr and Mrs Pope for the outfit.) Horace found what was probably a rabbit hole and spent a good ten minutes making the hole bigger before sitting down for a well-deserved rest!

Massimo was weighed on Tuesday and with the news from the ENT surgeon I forgot to let you all know. He now weighs 5.71 kgs (12 lbs 9 oz) and is taking 850 mls of milk per day (of which 500 mls is breast milk and the rest is SMA Gold). Continue reading “Bits ‘n’ pieces III”

Max’s ENT consultant just called to say that he does not have papillomatosis. Instead it seems that he has Rhabdomyoma. We are still waiting for confirmation from the Royal Marsden that this is the case, but Mr Daya was pretty confident in the St Georges results.

He described it as a benign growth of muscle tissue that starts near Max’s tonsils, and has completely blocked his upper airway. It is not however what caused the need for the trachy in the first place as it was not present when the trachy was put in.

The concern is that it could continue to grow and compromise his existing airway, so it needs to be dealt with sooner rather than later. He will be having a scan within the next 2 weeks to determine exactly where the growth is, after which he will have surgery to remove it. Obviously, removing tissue in and around the airway is a delicate procedure.

We will be meeting up with Mr Daya hopefully quite soon to discus all the implications.

From the few sites I have looked at about Rhabdomyoma, and from what Mr Daya said, this is an extremely rare condition.

Max likes to keep everyone on their toes!

We have had a request for pictures so here are a few for you. There is Dom and Massimo taken on Monday when Dom, Zoe and Lizzy came over for lunch and Massimo taking a well earned rest in the sunshine. He looks very uncomfortable but this is the position he chose!

There is Maz with her daughter Maddy (born on 22nd December 2002) taking a quick 40 winks during their visit yesterday. Then we have Maz and Maddy, Massimo and myself. You can really see the huge difference in size between Maddy who is only 6 weeks older than Massimo but who was a term baby and Max who being 8 weeks premature has had lots of catching up to do!

Well there is nothing much to report since Monday’s entry. Massimo and I are really enjoying being at home and it is lovely to feel like a family again.

Massimo and I have been taking Jasper and Horace for their walks yesterday and today and we thoroughly loved the fresh air and the exercise. Massimo gave me plenty of smiles yesterday, the sun was shining and the dogs were having fun. All this was brought to a dramatic halt when I realised that Horace was in pain and Jasper had started shaking his head frantically. Grass seed season is afoot and they both managed to get them stuck in their ears. J valiantly took them to the emergency vet (it was 7.30 pm) and they came back feeling low and sleepy as they had both been sedated. Horace kept walking sideways and Jasper just nearly (nearly) turned up his nose at the small portion of dinner I offered them.
Continue reading “Bits ‘n’ pieces II”

Massimo and I were released today at 10.30. By 12.45 we were home, just in time for Zoe, Dom and Lizzy to meet us for lunch. Massimo is currently fast asleep in his buggy right next to his daddy who is working hard at his computer. Peace reigneth!

It is so, so good to be home.

Unfortunately Massimo’s temperature means that we are not being allowed to come home quite yet. It is possible that this temperature indicates an infection somewhere or it might still be a post-op reaction. He had no temperature overnight but it came back this morning so fingers crossed that it will go again tonight but won’t come back in the morning. Should he be without a temperature for 12-24 hours we will be allowed to come home. The only other impediment is that somehow, somewhere there has been confusion about his tracheostomy tube changes and some people seem to think that we can’t go home because J and I don’t know how to change the tube, others think that we can’t go home because there is a possibility that the granuloma will make a tube change difficult – the same granuloma that Mr Daya was going to laser on Wednesday but which has gone away of its own accord -and yet others are concerned that these warts mean that his upper airway is completely “compromised” and that it is unsafe for us to go home – yet his upper airway has always been “compromised” i.e. he could not and still cannot breathe through his nose and mouth. This is all a little frustrating and hopefully we can solve it to some extent by doing a routine tracheostomy change in hospital before coming home.

Other than that there is nothing much to report. We are both getting extremely irritated and irritable at being in hospital but we now have the buggy so a few strolls around the corridors of St George’s are in order. I am due back “inside” any minute now so will update you more on my next “release”!

Massimo has shown remarkable resilience, and I think this might become his trademark! He was very, very unsettled after the MLB yesterday, as Justin mentioned, and when we got back to the ward the sedation seemed to take effect and he slept on and off until this morning. He has had regular doses of Calpol to help with any pain he might be in and his throat definitely hurts as he had refused his dummy since returning from surgery, and we all know how much he LOVES his dummy! However this morning he removed his oxygen so I left him in air for about half an hour, then I put him back on oxygen because I needed to express his milk and didn’t want the monitor to be alarming every five minutes. 10 minutes later I noticed that he had knocked it off again so I just left him and he has been in air ever since. Admittedly he had me on a very small amount of oxygen, but even that would have kept us in hospital. So fingers crossed that we will be home soon.

We are meeting up with someone from the ENT team this afternoon to discuss accurately and hopefully fairly in-depth what the warts are and what treatment they will need, short and long-term. I’m sure J will update you all later.

Massimo did have a slight temperature this afternoon but this is normal post-op so assuming that this will clear up on its own, things are looking good. His cold/viral infection also seems to have cleared up. Also from this afternoon he has been enjoying his dummy again.

Hoping this all makes sense as I am writing in a hurry (I must get back to the hospital) and thank you all for your messages of support.

I think that J has covered things pretty well. At the moment I don’t think either of us are up to adding any more, we just need time to digest this latest development. We are hoping to chat to someone about this condition and get a clearer idea of what the future holds for our little boy.

I can’t believe that the little chap needs to go through more, I feel guilty with the implication from the website that I might be to blame but am not quite sure how that might have happened, above all Massimo and I both need to come home. We all need to feel like a family again so that we can draw strength from it.

Max went for the procedure on his airway today at about 12.30. Silvs called me at about 1.30 to say that he would probably be coming out of theatre shortly, so in to the hospital I went. After a bit of waiting, we went down to recovery at about 2.15, and met Mr Daya, the ENT surgeon in the corridor on the way. His wife went into labour this morning, so naturally he was in something of a hurry, but his brief explanation of what he had found was worrying.
Continue reading “Complications”

I thought as we have had so few pics recently I would post a pic of Horace having taken up residence in Max’s activity mat for the evening. It is obviously nice and comfortable.

Yesterday I left the ward for a couple of hours to come home for a shower and break. When I got back at around 3 pm I was told that Massimo’s temperature had just spiked to 39.5ºC and the nurse gave him some Calpol. His temperature came down to 38ºC but still not the 36.5ºC he normally is. When J and Kamilla came to see us at around 6 pm, Massimo’s secretions from nose, mouth and trachy were profuse and the hyoscine patch that I had put on an hour before didn’t seem to be having much of an effect. (The patch has now started to have some effect 12 hours later.) Anyway, J and I went out for some supper and when I came back I noticed that Massimo just wasn’t settling well, and every time he fell asleep he would wake up irritable a short while later. These are all symptoms of an infection and possibly an infection in his shunt, so when I spoke to the doctor at 11 pm at night she was galvanised into action. By midnight they had listened to his chest and found him wheezy, inserted a canula (thingy into vein for quick and easy access), taken loads of samples of blood and sent them off for analysis and had a chest x-ray taken (portable chest as they say in ER!). All these results came back normal, except that his haemoglobin levels are a little low. This morning the nurses took samples of his nasal and tracheostomy secretions and those have been sent off too.

At doctors rounds Massimo was diagnosed as having a viral infection. So we need to wait and see how he is on Wednesday before making a decision as to whether to go ahead with the MLB etc. In the meantime, fingers crossed.

On the positive side his shunt does seem to have had a beneficial effect. He seems to be much more alert and aware of his surroundings and yesterday morning he looked me straight in the eyes and gave me the most amazingly huge smile, my heart melted.

This afternoon Massimo left the lush surroundings of Great Ormond Street Hospital and returned to the more run down ward of Frederick Hewitt on 5th Floor of SGH. The ambulance drive was no fun as they didn’t use the neenars once and it took us the better part of an hour (traffic on a hot Saturday afternoon in town is pretty bad). Massimo slept from the moment we set off to the moment we got to SGH when he woke up and remembered he was due a feed. We were already 10 minutes late and he was NOT happy!

We were welcomed back on Freddie Hewitt like long lost friends and are settled and happy in our cubicle. We are expecting 3 calm and quiet days and then, IF Mr Daya’s wife does not go into labour on her due date, Massimo should be having his MLB etc on Wednesday. We are back on the same number as before (07046 200076 extension 7724) but don’t forget that it is 50p a minute. Visits would be much appreciated. I think that official visiting hours are 3 till 8 but they do not seem to mind if you don’t stick to those. Any visitors bearing fresh fruit/decent food of any description/espresso coffee will be welcomed with open arms, Massimo is happy on his breast milk but would appreciate cuddles.

Massimo is doing very well today. After a shunt insertion patients are raised slowly to ensure that they aren’t adversely affected by the change in the pressure in the head. Massimo was raised to about 30º with no adverse effects today so we expect that he will be raised even further tomorrow. The doctors were very pleased with him at rounds this morning and are happy for him to be transferred back to SGH from today. SGH didn’t have a bed today, so we will have to see what happens tomorrow.

We have a date for the brochoscopy/MLB/lasering of the granuloma and that will be next Wednesday 18th. We also have a date for his gastrostomy and that is 26th June. We are investigating the possibility of combining the two and doing everything on Wednesday as this would reduce the number of general anaesthetics he would have to go through, however the shunt has also incurred surgery on his stomach, so we don’t know if it would be too early for more surgery in roughly the same spot.

Massimo and I had a lovely cuddle this afternoon. His pain medication has come down today and he doesn’t seem to need anything extra so hopefully that means that his bits ‘n’ bobs don’t hurt as much today. So all in all a good day.