An update – finally

Sorry for the long delay since our last entry but I have been feeling very, very unsettled about Massimo’s stay in hospital, but finding it very hard to pinpoint exactly why I was so unhappy with everything.

A few things did bother me and bothered me more and more as the days have gone by. The first is that they kept taking him off CPAP even though he seemed to be working very hard with his breathing. I couldn’t understand why they appeared to be making things harder for him. I spoke to a very nice doctor today (Jonathan) who explained that as the CPAP did not appear to be helping him, it was better that he wasn’t relying on it otherwise if his breathing got any worse the only way to assist him further would be to put him on a ventilator (rather than just back onto CPAP). He was off CPAP for most of Sunday, Monday and Tuesday but every day, at some point, he would be put back onto it. Also he always seemed to be working very hard. Today he has been on CPAP all day and he had a very long cuddle with me which seems to have helped him to settle down much better. The plan is to leave him on CPAP now until Friday morning and review him then. Obviously if he starts breathing more normally they will try to take him off before then.

The other thing that bothered me was the fact that they keep sedating him at night. They tell me that he doesn’t settle well and gets quite agitated and eventually yesterday I asked them not to sedate him unless it was really necessary. Last night when I called as usual to ask how he was, they told me again that he had been sedated. Today, I repeated my request that sedation should only happen as a last resort and I hope that as he was more settled when we left, a dose of paracetamol will be more than enough to sort him out tonight.

He seems to have finally turned a corner as both Justin and I felt that he looked better today. His breathing did seem a little easier. I am sure that the fact that I spent longer with him today and that I gave him a very long cuddle this afternoon (he slept on me for nearly 2 hours – my arm and bottom were very sore) really helped to settle him. I sincerely believe that he knows he is back in hospital and he doesn’t want to be there. He doesn’t like the doctors and nurses because they always seem to be doing things to him and generally hurting him and therefore this is unsettling him and delaying his progress. We need to have our fingers crossed that he is better by Friday.

Several other things came out of my conversation with the doctor today. They did a BAL (Bronchial-alveolar lavage) on Monday because they are afraid that Massimo could have aspirated some vomit (caused by the reflux) which would sit in his lungs causing difficulty in breathing. The results of this have not come back yet. Also he said that as Massimo has an abnormality in his upper airway, ie his narrowing, it is logical and likely that his has other abnormalities further down his trachea. He has therefore asked GOS to do a proper bronchoscopy – with the MLB (micro laryngo bronchoscopy) they focus on the upper airway and is more of a tracheoscopy than a bronchoscopy.

GOS has been in contact with SGH and as Massimo hasn’t been well enough to go there yet, they asked if SGH could organise a fresh CT scan. This was done yesterday. The plan now is that if Massimo is well enough he will be transferred to GOS as he is on the list for surgery on Friday. The hope is that surgery will go ahead even if Massimo is still on CPAP as long as they have a bed for him in PICU. This would be the preferred and most straight forward option as the shunt and the bronchoscopy can be done together (and now). He would then go for the gastrostomy and the MLB as soon as possible afterwards. The gastrostomy is quite important from a reflux point of view as he could be aspirating his vomit and compromising his breathing, and because the acidity could be causing more problems to his tracheostomy. The MLB is not urgent, but it would certainly be nice to know a bit more about what caused the need for his trachy in the first place and more importantly to figure out what his future requirements are going to be. By the way, the MLB is done by an ENT surgeon and the bronchoscopy is done by a respiratory surgeon therefore considered two different ops!

If Massimo is not well enough to go to GOS and/or they are unwilling to take him on CPAP, then the bronchoscopy will go ahead at SGH asap and they will do the MLB at the same time. If he isn’t getting better they really want to find out what, if anything is in his lungs. The shunt will then happen as soon as GOS can take him and the gastrostomy will happen later on.

Further Massimo has been getting very upset before performing (pooing) and today Jonathan had a look at the little boy’s nether regions and found a (healing) fissure in his anus. This is just a very thin (paper cut -like) break in the skin around the bottom which, of course, hurts whenever he needs to poo or fart. How and why he has this is unknown especially as he has been fed mainly breast milk with some SMA therefore he has had no hard “stools” which would could be blamed for this condition. However, his little cousin in Italy has the same problem! Most importantly it is healing and it is getting better.

In conclusion, I apologise for the long and drawn out medical stuff, we hope that Massimo has finally turned a corner and that he is beginning to get better and above all I am much happier with everything after my chat with Jonathan and I hope that this rubs off on the little man. J and I still have our coughs and sore throats, although J’s seems to be on the way out and mine seems to be gathering strength.