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This isn't what we wanted. Leo has had a few colds, but this one really got him and got down into his chest. In reverse chronological order we provide here an overview of what has been happening. If it's your first visit, you may like to start at the bottom and work up. If you are returning, latest updates are just below.
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Tuesday 25 October
Today is Leo's six month 'birthday' and we were hoping to celebrate it at home. Alas the x-rays taken yesterday showed one lung recovered, but the other still not inflating fully. He is having an ultrasound later today or tomorrow to check it out further.
We have had Miki here again over the weekend (she heads back today) and she has been so helpful around the house and played endless games of boats with Max. We will miss her.
Sunday 23 October
OK, it's been a few days. Part of the excuse is that I have had gelato spilt on the laptop (don't ask!) and the keys and mouse pad are literally sticking. But the other reason that there hasn't been a lot of news.
Leo is improving solidly. He doesn't have any oxygen anymore and he is in good form. He is even tolerating his aersols (a fizzy mask with a menthol like vapour) in a way he never has. It's not like he likes them but before, it was horrific.
The doctor this morning was saying that he will have a chest x-ray tomorrow (Monday) and may be discharged Tuesday or Wednesday.
We are still unsure about how careful we need to be with flying and Leo. We may need to delay our departure a little bit to give his lungs a little bit more recovery time before we go.
Thursday 20 October
Leo is continuing to improve and has one a tiny amount of supplementary oxygen as of this afternoon. Once they turn it off, monitor him and do a final x-ray, we will finally be able to say goodbye to the hospital.
Danielle has slept there every night for the past week. At best in a patient bed, at worst a reclining chair, but always with beeping machines, nurses entering through the night, a little boy who gets an aersol shoved in his face at 3am and then won't go back to sleep. It is amazing what she has gone through.
So, it's a good thing the food and coffee in the hospital bar is so good. (More hopefully tomorrow!)
Wednesday 19 October
Another day with steady improvement. Such that Leo has moved from a neonatal to a regular pediatric ward. As I write this Max and I are hanging out while Leo is settled in, but already it is more relaxed in it's arrangements, more noisy and a little more chaotic. Perhaps we were a bit spoilt up until now. Leo is sharing a room for the first time and I fear the 8 year old is going to be distrubed more by Leo than vice versa.
Leo's behaviour is completely normal now, so it's fun to play with him and get him talking and smiling back. The trick is to wean him off the oxygen supplement he is getting while still keeping his blood oxygen saturation levels up.
We still can't get a firm answer on when he will be out, but we were another step closer today.
Tuesday 18 October
This morning Danielle spoke to the Pediatrician at the RPA (The hospital in Sydney where Leo was born) and got a general review of Leo's situation with the ease of both parties speaking in a natural language.
He reassured us that Italy was a great country for this to happen in and that all the treatments that Leo has received would be equivalent to what he would receive in Australia. It was really nice to hear.
Danielle has been amazing with her Italian and has rapidly expanded her vocabulary in both technical medical terms and colloquialisms for babies' bodily functions. Quite a few of the staff speak some English and a few of the doctors are reasonably strong, but we do miss being able to communicate instinctively and with all the subtleties of two people speaking in their native language.
Leo has continued to improve and his behaviour is essentially normal - well as normal as it can be hooked up to a nasal oxygen supplement as well as an array of sensors connected to a beeping machine.
He had his cannula removed today, so that is always a positive milestone. They were also talking about moving him to a general pediatric ward but it didn't happen today. Hopefully tomorrow.
Monday 17 October
Leo is really returning to his normal behaviour; how nice it is to see him smiling today. He started some physiotherapy which involves Lucianna cajoling him with a hybrid of Italian and English encouragement while she pats and massages his chest to shift any mucus that may be limiting airflow to the far corners of his lungs.
He also had a precautionary cardiogram (see right) that he passed with flying colours despite vomiting all over the sensors on his chest.
Today Max lit a candle and said some prayers in the small chapel attached to the hospital and right next to the side entrance where we usually sneak in. He has been so supportive and tolerant, especially as without baby-sitters from today he has to make the trip twice as often as us as we do the tag-team switch.
Miki and Nonie returned to Dublin this morning after being here since Friday. For them it has been a real bus driver's holiday as they have shopped, cooked, cleaned and baby sat for us. It has been wonderful to return from the hospital after my shift with Leo to have a beautiful meal prepared for me and great company. They offered to stay, but we declined it.
Sunday 16 October
Today we got some time with Claudio, the pediatrician who is taking the case. In his mid-forties, he has the build of a past rugby player. He speaks quietly and in English he speaks slowly with plenty of pauses for the right word. He speaks so grammatically correctly that it lures you into believing you are comprehending what he says, but it does get technical and intricate and as much as he tries and we try, we crave to be able to speak to a native speaker.
He explained that the virus has gone, but that the damage it caused is still there and will take some time to resolve. Some parts of Leo's lungs aren't inflating yet and other parts are overinflating as they try to compensate.
He uses the word 'dynamic' a lot in his explanation, which we take to mean 'could get better, could get worse' but when we push him a little he says Leo is exactly where he would expect him to be.
Leo had an ultrasound this morning to try and resolve whether the air bubbles in his lungs they thought they may have seen in yesterday's x-rays actually exist and the news is good.
Danielle had lunch out with Miki, Nonie and Max today and it was nice for her to get out of the hospital and have some time off. She has slept beside Leo every night and going through all the trouble of expressing milk as well as just being there for Leo.
Saturday 15 October
Leo moved from Intensive Care to Neonatal today which is a nice landmark to tick off. He has a huge private room (see right) separated from the newborns and shares a nurse with one other baby. It feels a relief to be slightly more relaxed and away from intensive care.
Leo had a couple of x-rays of his chest today. They wheel a machine in that is painted like a giraffe, which becomes obvious as they extend the 'neck' out that allow them to align the x-rays. Apparently x-rays of the lungs are very hard to interpret, but the doctors are worried that they may had spotted an air bubble in Leo's lungs.
If he has, it should resolve itself naturally and the air be redissolved back into the blood. However, if it bursts then that's not good, but I'm not sure exactly how 'not good.'
Leo has also had the hood replaced with a nasal tube that feeds air with added oxygen to help. We won't miss that and I'm sure neither will Leo.
This evening, my mum, Maryke, left for Rome to fly back to Australia tomorrow morning after a month in Italy. She very graciously delayed heading down to do the tourist thing in Rome to be here and support us and she has been wonderful at cooking, cleaning, washing baby-sitting etc.
Max also got snuck in to see Leo. I feel I need to explain that we had the doctor's permission, but children are not normally allowed into neonatal. So after getting him washed and dressed in dark green paper gown and face mask, I carried him down that back access way and gave him a couple of minutes for the brothers to see each other. It was beautiful to see how Leo responded to seeing Max.
Friday 14 October
Leo improved slowly, but steadily over Friday Danielle stayed overnight and was very relieved when they wheeled a patient bed in beside Leo so she could get some sleep, something that has been scarce in he last few days.
Both Danielle and I spent a lot of time playing the game of trying to reinsert a dummy into the mouth of a grumpy and miserable boy inside a clear plastic hood. It took a lot of patience.
The staff have been friendly and helpful. The nurses have always offered me a meal when I have been there, but usually I have given it a miss. Not only is this because of the notorious nature of hospital food, but also the bar upstairs does wonderful pizzas.
Today, for convenience sake, I decided to do it while Danielle caught up with Miki and Nonie and it wasn't bad! Pasta (of course), a salad (of course) and a tasty, if horrible looking, thick slice of sausage meat with a thick pale brown sauce with diced carrots over it. If you didn't think about what it looked like, it was quite edible. Certainly far better than anything Danielle got at the RPA.
Thursday 13 October
We bit the bullet and took Leo into Hospital. Well, Danielle really was the one who pushed it. Danielle, Maryke (my mum) and I did shifts through the night to hold Leo and watch his condition.
I wasn't sure that his condition had changed much from yesterday and was worried that we would get turned away.
Instead the opposite happened. Within a few minutes, Leo was whisked off for a rapid assessment and then put into Intensive Care.
Yes, (not for the first time) Danielle was right and I was wrong. Thank goodness she insisted.
They limit access here to only one parent (by default the mother) so with no prospect of being involved, I headed back to our house until we knew more. Danielle had to wait outside Intensive Care until he became stable and she found it torturous the three hours or so of not knowing what Leo was going through behind the security doors.
Other than the limits on access, the professionalism of the staff and the equipment in the hospital have impressed us. The locals are proud of their hospital and the standards it has and it seems with some justification.
Once Leo had stabilised, Danielle could go in and later we did a bit of tag team of sitting beside him. He is in a hood that creates an increased pressure that helps the extremities of his lungs to stay inflated and contains supplemented oxygen.
He is connected to a lot of sensors, blood samples, swabs and poo has been collected for testing and he has his own nurse looking after him.
Wednesday 12 October
We had a doctor do a home visit today. He spoke a little English, but either language was compromised as it looked like he has had a nasty stroke in the past. He told us that it was viral and that it sounded like it was in the lungs. He set us up with a whole regime that included antibiotics to prevent a secondary infection and instructions to get an aerosol machine to create a vapor with some steroids for Leo to breathe. He advised us that if he got worse to take him to the hospital.
Tuesday 11 October
Leo came down with a bit of a snuffle. As we had all had sore throats and runny noses it was no real surprise. He was making some noise when he breathed, but we had taken him a couple of times to the GP in Australia worried about these noises only to be told that it was phlegm in the back of his throat rattling away and it sounded like that again to us.