# Tuesday, 30 December 2008

Back in hospital, and Simcha is being toilet trained!

As expected, Chaya Devoira is back in hospital. Her breathing was become more strained, and she was working very hard, fighting for every breath. We took her in yesterday lunchtime, and they took her up to a ward in the early evening. She was on oxygen, which helps keep the saturation levels up, but didn't seem to do anything for her breathing.

The doctors are convinced that this is bronchilitis again, whether the same strain or another.

Her breathing was bad during the night, so they transferred her to the High Dependency Unit (HDU) this morning. This is good, in that she will have closer care, but it means that the situation is serous.

With exquisite timing, the Boss had decided to toilet train Simcha this week. Off came the nappy, and out of the house went the Boss! So far, she has done pretty well, with only one accident in 36 hours (excluding sleep time, when she was wearing a nappy). She seems to have the hang of it very well, and goes when asked.

We are running out of sweets though, as I decided to reward her for each successful trip. I don't know how much this has contributed to the progress, but she's eating me out of house and home!

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# Sunday, 28 December 2008

The tube came out - twice - and we didn't go to hospital!

An amazing thing happened. Chaya Devoira's feeding tube came out twice this weekend, once on Thursday night, and once on Shabbos, and we didn't go to the hospital! On both occasions, the Boss managed to get it back in again. I think she's ready for the nursing exams!

Unfortunately, Chaya Devoira's breathing has been laboured for the last day or so, and she seems to have some kind of bug. The nurses came to see her this morning, and they weren't happy. As they seem to trust the Boss to be sensible, they gave her the benefit of the doubt, and let he stay home. They are coming back tomorrow to see how she is. I have this nasty feeling that they may end up back in hospital again.

Ho hum, here we go again!

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# Monday, 22 December 2008

Couple of pictures

Thankfully, life has been pleasantly dull, with no unexpected visits to the hospital. This make blog entries short, which is fine by me!

The only slightly exciting thing that happened was that Chaya Devoira's tube came out again, which resulted in a brief visit to the hospital to have it put back in again. Like last time, I took the opportunity to remind myself what a lousy photographer I am, as I tried to get a decent picture of her. This was the best I could manage...

Chaya Devoira

Not outstanding, but about as good as I have managed. She looks a little surprised, but I guess that's understandable as I was flashing lights right in front of her!

The shame of it is that she has a smile that lights up her whole face, but it's impossible to guess when she's going to give it. I have a hard disk full of pictures of her about to smile, and having just smiled, but haven't yet caught the actual moment. Oh well, I'll keep trying :)

On the other hand, Simcha is dead easy to photograph! Apart from being very photogenic (bli ayin horo), she also smile pretty much all the time. Here she is jumping for joy...

Simcha Jumping

One of her favourite pastimes is washing up. She will pull the stool into the Boogle (which, for the uninitiated amongst you is the small room where we keep the washing machine, dryer, Pesach kitchen, etc), climb up so she can reach her pinafore, drag the stoll back into the kitchen and climb up in front of the sink, ready to wash up...

Simcha Washing Up

I only hope she is as enthusiastic about it when she is able to do it properly!

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# Monday, 15 December 2008

Hurray, they're home!

Boruch Hashem, the Boss and Chaya Devoira came home this lunchtime. The doctor came round this morning, and was contemplating the oxygen levels. He tried turning off the feed altogether, and watched as her saturation levels dropped a few percent below the acceptable level. He turned it back on again, then off again. In the end, he decided to send them home before the levels dropped any further! I think he was satisfied that everything was fine, and wasn't worried about one or two percent on the level.

When she told me that they were ready to come home, I called to Simcha (who was the only one home at the time) and told her that Mummy and Chaya Devoira were coming home. She grinned and jumped in the air. The two of us danced around the kitchen for a few minutes before getting in the car.

So, we are complete again. IY"H we will stay this way now - although I've said that before! They are going to review her case on Thursday, so we should find out about the operation by the end of the week.

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Oxygen levels better, but still not quite good enough

The Boss and Chaya Devoira are still stuck in hospital, although we are hopeful that they will be home soon. As I think I mentioned before, they put Chaya Devoira back onto the nasal specs, which are small tubes that go a short way into her nostrils, so they can supply a carefully measured amount of oxygen. Although this seems like a step back from the oxygen mask kept near her face, it is actually an important stage in measuring how much oxygen she actually needs.

The mask was supplying about 5 litres per minutes (lpm), although much of this was wafting around and escaping into the air. The nasal specs supply oxygen directly into her nose, so very little (if any) is lost.

She was on one lpm before Shabbos, but they brought this down to 0.9 lpm, then 0.7 lpm, with the intention of reducing it to the stage where they could turn it off altogether. At each stage, they have to ensure that her oxygen saturation levels remain high enough.

Shabbos was, by all accounts, a pretty challenging time for the Boss. When I went in on Friday afternoon, the ward was almost empty. The girl in the bed next door was on her way home, and there were only two other patients there, both small babies. This gave some hope that Shabbos would be peaceful.

Sadly, it was not to be. Late Friday afternoon and through the evening, a steady stream of children came onto the ward. Most of these were of an age where they needed entertainment, usually of a noisy sort. Shabbos day was a cacophony of DVDs and PlayStations, both played at full volume of course. Why people can't keep the volume to a reasonable level is beyond me, but it seemed that everyone was competing to see who could be the loudest.

Right in the middle of all this was the Boss and Chaya Devoira. Attempting to create some sort of Shabbos spirit amongst the din, the Boss said Tehillim and tried to block out the noise.

By the time we arrived after Shabbos, she was worn out. The noise had quieted down to the level of a mere earthquake. Thankfully, Chaya Devoira had slept most of the day, and was in fact so sleepy that we were a little worried if she was OK. The nurses reckoned she was just catching up on some lost sleep from the previous few days. How she managed it with the noise is beyond me, but she has impressed me with her determination before! My mother reckons that she has the fighting spirit of her namesake, which is probably a good thing, considering the challenges she faces ahead of her.

The oxygen levels were down to 0.3 lpm by the early evening, and we were hopeful that they could be reduced even further. The doctor had given the nurse permission to decide when to reduce it further, and the nurse seemed happy for the Boss to take this on.

Unfortunately her attempts to reduce the level wasn't met with the success we would have liked. She took it down to 0.2 lpm, which was fine for a while, but then Chaya Devoira's saturation level dropped below the acceptable limits, and we had to raise it back again.

The nurse said that babies often respond better to a drop in oxygen when they are asleep, so the Boss is going to try and reduce it overnight, and see how she is by morning. As soon as she can get the levels down to the point where they can switch the oxygen off, they can come home. We live in hope :-)

Oh, and for those who are wondering, I spent far too long battling with the badly written software that came with the MP3 player, but eventually managed to get quite a few hours of music on there, along with a few videos of the children.

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# Thursday, 11 December 2008

Still in hospital, hoping to be home for Shabbos

Nothing much has changed, except the Boss is even more bored than before! Chaya Devoira is doing fine, but is still not keeping her oxygen levels high enough for them to let her home. It's frustrating, as she is keeping at the same sort of levels as she was doing before she went in, and is certainly breathing fine. I guess they are being cautious.

Being on the open ward has been a bit difficult, due to the lack of privacy and the higher levels of ambient noise, but it has its advantages. The bed next to Chaya Devoira's is occupied by a 13-year old Jewish girl, who had an operation. Her mother stays by the bedside most of the day, and turns out to be a very nice lady. She and the Boss have got quite friendly, which helps things along.

I bought an mp3 player yesterday. I've been itching to buy one for ages, as I love gadgets, but couldn't justify the cost as I rarely need something like that. However, on the suggestion of a friend, I got one so that the Boss could listen to music or shiurim whilst sitting in hospital. I don't know why I didn't think of it before! I even wrote the web site for Start Your Day The Torah Way, who have hundreds of shiurim for download.

The downside of this is that I spent far too much time last night playing with it, and trying to work out how to get some music onto it. I managed, but not without problems. Still, it's given the Boss something for the morning. I'll pinch it back this afternoon and see if I can get some shiurim on.

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# Tuesday, 09 December 2008

Boruch Hashem, much better, but still in hospital

OxygenI managed to get to the hospital in time to see the doctor on his rounds this morning. Boruch Hashem, Chaya Devoira is doing well, and is basically off the oxygen. She still has an oxygen mask near her, purely to increase the ambient levels around her. She doesn't generally need this, but as her saturation levels sometimes drop a little low, this helps keep them up. Hopefully they will be able to remove even this fairly soon.

They finally got the results back from the labs, and it turns out that she doesn't have bronchiolitis as we had thought. Instead, she has something called (I think) a rina virus. Not sure what that is, but it's a virus, and is thankfully on its way out. Like her namesake, Chaya Devoira is a tough cookie, and is not taking all this without a fight!

Having been on a slow drip feed for a couple of days, they decided to start semi-normal (tube) feeding again. They are trying her out with feeds every two hours, and if she tolerates those without problems, then they'll go back to every three hours, like she was before.

Once she can cope with being fed every three hours, and keep her oxygen levels up, she can come home. It looks like this will still be a couple of days though. Unfortunately, they moved her out of the isolation cubicle, which was fairly quiet and private, onto the main ward, which isn't so quiet and not at all private. This is harder on the Boss, who is staying with her, but she's taking it very well.

End of newsflash.

P.S. As mentioned before, we have a fair amount of cake left over from the kiddush, so I decided that for the benefit of those of you who don't live close enough to pop in, I would attach some to this blog post, in much the way that you attach files to an e-mail. If your browser supports cookies, you should be able to download them!

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Chaya Devoira getting better, but still in hospital

Well, having mentioned on Thursday that the Boss and Chaya Devoira were staying in hospital over Shabbos, things moved fairly quickly after I had switched the computer off.

On Friday afternoon, one of the neighbours, who has been an amazing help since Chaya Devoira was born, came over to ask if she could stay in hospital over Shabbos, so that the Boss could come home for the kiddush. Normally, she would never agree to this, but due to Chaya Devoira's breathing problems, the doctors had taken her off milk, and put her on an IV drip. She was also going to be moved to the High Dependency Unit (HDU), which is basically one step down from intensive care. The benefit of this is that Chaya Devoira would have one nurse specifically assigned to look after her. With this extra care, and the neighbour staying by the bed, the Boss agreed to come home.

So, the kiddush went ahead with both of us, but no Chaya Devoira. This wasn't actually a bad thing, as having loads of people breathing and cooing over her in the colds and coughs season wouldn't have been a good idea anyway.

The kiddush was lovely, although we ended up with more cake than we expected as there were seven other kiddushin on the same day! If you're in the area, and want some cake, please drop in and eat some!

After Shabbos, we went off to the hospital to see how things were, to find that Chaya Devoira's breathing had been even more laboured on Shabbos morning, and they had put her on a fancy looking machine called SiPAP. This looked like a medieval instrument of torture, involving a cap that fitted over her little head, with all sorts of wires, pipes and tubes connecting her to various machines that went "bing" and "ping" at irregular intervals. She also had a strap around her head, which held a large contraption over her nose, so that the machine could pump oxygen into her lungs, avoiding her the need to inflate her own chest. I confess that the site of my helpless little baby wired up like that was enough to bring me to tears. She looked so small and vulnerable.

Anyway, she stayed on that overnight. Boruch Hashem, they decided that she was doing well enough on it to try taking her off it on Sunday morning. They gave her a mini version of it instead, which was altogether less evil-looking, and probably less uncomfortable. As she seemed to be doing OK on this, they took her off the machines altogether, and just gave her some ambient oxygen through a mask held near her face. She stayed like that for about five hours, which was excellent.

They put her back on the SiPAP machine overnight, but the doctor agreed to let her off it again this morning. She stayed off it for the rest of the day, and was ready to move out of the HDU into a regular ward by early evening. This is very encouraging, and means that she is well on the way to recovery.

They moved her over around 8pm this evening. She started off without any oxygen at all, and wasn't doing badly. After a while, her blood oxygen saturation levels dropped, so they put the ambient feed back on. This could have been from the exertion of moving, and being off oxygen for a while. We are hoping that she will be able to come off it again in the morning. If she can keep her saturation level up to 85% without extra help, then they will let her home. We have to daven that she'll manage this sooner rather than later.

Whilst she was on the ward today, they weighed her, and she is now 7lbs 8oz, which is pretty good! She still needs to put on some more weight, but she is definitely going in the right direction. The surgical team at Alder Hey hospital are reviewing her case again next week to see if they think she is ready for the heart operation. I hope so, as that should give her a big boost.

Way past my bed time. I wouldn't get away with typing blog entries at this time of night if the Boss were home! Night night.

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# Monday, 08 December 2008

These are hilarious! Real sci-fi movie trailers from the 1950s

OK, so I admit I was wasting time. As I was driving to the hospital, I noticed a poster on a bus stop, advertising the imminent release of a remake of The Day The Earth Stood Still, which was one of my favourite 1950s sci-fi films (back in the days when I used to watch such things). Curious as to what they had done with it, I had a look at the web site. Predictably, this led to YouTube (doesn't it always), and the inevitable wasting of time watching videos.

Anyway, along the way, I came across the trailers for two sci-fi films from the 1950s, which were so awful as to be very funny. I have never heard of either of these two films, but judging by the trailers, I don't think many people would have!

Watch the trailer for The Giant Claw if you dare! If you can stop laughing at that one, watch the trailer for Robot Monster and guffaw some more!

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# Friday, 05 December 2008

Back in hospital again

Unfortunately, Chaya Devoira has gone back into hospital. Her breathing was a little laboured yesterday, but not enough to be significant. However, it got worse during the night, and we took her to the doctor this morning. He recommended taking her down to the hospital, where she was admitted and sentenced to three or four days servitude. The saturation of oxygen in her blood was low, so she is back on an oxygen feed again. They tried to insert a breathing tube up her nose (the nostril that doesn't have the feeding tube), but they couldn't get it to go in, and she got so upset by this, that they gave up. She seems to be managed OK on the oxygen feed through the mask though.

It looks like she has bronchiolitis, which is not a spelling mistake, but is an infection of the twiddly little passages in the lungs (bronchial tubes, as opposed to the larger bronchal tubes, which are what get infected with bronchitis). To quote from the NHS web site...

"Bronchiolitis is a common respiratory infection that affects babies and young children. It occurs when the smallest airways in the lungs, called the bronchioles, become infected and inflamed, leading to a build-up of mucus. This makes it harder for the child to breathe because the amount of air entering the lungs is reduced." Read the full article here.

Sadly, this means the Boss will miss the kiddush, which is supposed to be happening this Shabbos. The doctors don't seem too worried about Chaya Devoira, as it is a very common infection, and not dangerous. They are keeping her in as a precaution, as her delicate medical condition means that they need to monitor her closely during any infection or illness.

The silver lining in this cloud is that they have given them an isolation cubicle, which is fairly large, isolated from the main ward, and with a real bed for the Boss. This means that she can have some quiet, privacy, and a decent rest.

More bulletins as events warrant. Good Shabbos to you all, and if you live nearby, please come in for a l'chaim on Shabbos morning.

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# Monday, 01 December 2008

Maybe it's wishful thinking, but...

I went into Chaya Devoira's room this morning when I came home from shul. She was awake in her cot, looking at her mobile.

I should point out that I am referring to the colourful decorations, often found hanging over babies' cots. I was not referring to a mobile telephone, as some more astute readers may have realised. We decided not to let Chaya Devoira have a mobile telephone in bed, as we were concerned that she would spend too long chatting into the night, and would not get the rest that she needs before her operation.

As I walked over to the cot, she turned her head towards me and gave the most beautiful smile! Her whole face lit up. The Boss thinks that she does smile at faces she recognises, but I'm not so sure. I don't seem to remember the others smiling quite this young, and given that she is likely to develop later than the others, I think it might be wishful thinking.

Either way, it made my day :-)

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