# Monday, 02 February 2009

In intensive care - but don't worry, it's not that serious!

Chaya Devoira was transferred to the intensive care unit (ICU) this morning. Before you panic, this was only because they didn't have a bed in the high dependency unit (HDU) where she went the last couple of times. Just like before, her breathing became more difficult as the virus/infection set in, and she got to the stage where they wanted to put her on to the SiPAP machine that pumps the oxygen into her at a sufficient pressure to keep her lungs open. They would normally have done this in HDU, but they didn't have any beds, so she went into ICU instead.

Now, I'm pleased to be able to say that I've never had the need to see inside an ICU before. Having seen the HDU, and knowing that ICU is one step up in care from HDU, I imagined that ICU would be a very silent place, where each bed was in its own cubicle, where the nurses crept around and spoke in hushed tones, and the inert patients would lie semi-comatose in their beds, each hooked up to a wealth of serious-looking machines.

Hah, was I ever wrong! Talk about noisy! It was more like an open ward, albeit with rather more security on the door, but with loads of people bustling around. True, there were more machines than I'd seen in one place before, but the majority of these were familiar to me from other wards.

Anyway, right in the middle of it all was Chaya Devoira, with her strange mask on and the SiPAP bubbling away (it removes the moisture from the oxygen before shoving it up her nose, as it wouldn't be too pleasant having a nose full of water!). She was calm and drowsy, although it turned out that this was due to heavy sedation.

All in all, she is doing fine. They slowly reduced the oxygen levels during the day, but she is still on 35% oxygen, which is quite a lot higher than the 21% in normal air. They aren't in a hurry to get her off the SiPAP, as they would prefer to make sure she's really better first. Sounds good to me.

The cardiologist came round while I was there, and we asked him how this would affect her operation. He said that it depends on whether she has a virus or an infection. If it's a virus, then they will want to leave her for a couple of weeks before operating. If it's bacterial, then they can go ahead straight away.

It turns out that Guys hospital, where she is to have the operation, currently has a very short waiting list, and they were going to ring us on Sunday to ask her to take Chaya Devoira down, so they could operate today! As she was admitted on Shabbos, this never happened.

It seems that if she has an infection, they could call us at any time for the operation. This is good, in that she should get seen sooner, but it puts us on alert pretty much the whole time, which is quite a strain. It also brings the whole thing more closely into reality, which had to happen some time or other. Subconsciously, I think we were putting off the thought. Looks like we can't now!

Anyway, no more news for now. IY"H she will be home soon, but we'll see.

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# Sunday, 01 February 2009

Sigh, back in hospital - when we were so close

Due to breathing difficulties, we had to take Chaya Devoira into hospital yesterday (Shabbos). It seems she has yet another virus, so is back on the same routine as before.

Unfortunately, we are still at the difficult stage, where her breathing is very laboured, and she needs high amounts of oxygen pumped into her to keep her levels to a safe point.

Apart form anything else, the problem with all of this is that she was supposed to have her heart operation on the 13th Feb. The cardiology people said that they want a full ten clear days from when she gets over the virus before they will operate. Her previous bouts of these viruses have kept her in hospital for 11 or 12 days, so if this pattern is to be repeated, she would only be coming out of hospital the day we are supposed to go to London to check in.

Oh well, all in its right time I suppose. For now I'm playing Mummy again.

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# Wednesday, 28 January 2009

Chaya Devoira fast asleep in her chair

I managed to catch a picture of Chaya Devoira whilst she was fast asleep, with a full tummy and (presumably) sweet dreams.

As you can see, she has filled out somewhat, and is almost chubby now!

We are still waiting to hear about her operation, but boruch Hashem, things are quiet here, so we aren't complaining.

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# Monday, 26 January 2009

Two cute comments

I had to share these with you, they're just sooooo cute!

Simcha and the frogs

We were sitting at the Shabbos table, and Simcha was on my knee. I was asking her about the sedra, and telling her all about the plague of frogs. I said that when Paro (Pharaoh) woke up, he found frogs in his bed, frogs on his head, etc. I kept going on about there being frogs in his dinner, frogs in his shoes and so on. Unbeknown to Simcha, I had hidden a green plastic frog in the bowl of Smarties that was on the table in front of us.

As I worked my way through the list of places were frogs could be found, I pushed the dish of Smarties under her nose, so that she could see the frog, and asked "And what was in Paro's Smarties?"

After a moment's thought, her face lit up and she shouted "CHOCOLATE!"

Who made the snow?

After hearing the above cute story, someone else at the table said that she had heard another cute one from a family who live very near us. They have triplets, around the same age as Simcha. One day, one of the triplets was looking out of the window at the snow. Turning to her mother, the little girl asked "Mummy, who made all that?"

Her mother answered "Hashem did," to which the little girl replied "Well, I hope he's going to clear it up then!"

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# Sunday, 11 January 2009

Welcome home Oxygen Girl!

After an edge-of-the-seat rush that would have been worthy of a good thriller, we managed to get the Boss and Chaya Devoira home 25 minutes before Shabbos. As I mentioned before, we were expecting the home oxygen people to ring on Friday to arrange to come and assess the house. We thought this meant that they would come and install the system on Monday.

At around 11:30am on Friday, I had a telephone call from them, asking if it was OK to come round and install the system! I replied in the affirmative, and within about ten minutes, there was a chap at the door with cylinders, pipes and a machine. He said it would take about 20 minutes to install, and would then be ready for use. Contrary to our previous understanding, the machine turned out to be a fairly modest, portable affair that sits in the corner of the room, extracting oxygen from the air and pumping it down the outlet tube. This connects to the nasal specs, which are small prongs that go up Chaya Devoira's nostrils, and send oxygen to her lungs. This isn't as unpleasant as it sounds, as the prongs are quite short, but it does involve extra sticky tape on her face to hold them in place, as you can see in this picture...

Chaya Devoira having a cuddle with Grandma

If this were to be a long-term situation, they could plumb tubes around the house, so that she could be plugged in in any room. As we are hoping that this will only be for a few weeks, we opted to have a long piece of tube attached to the machine, so that we can trail it around the house to wherever we want to take her. He also gave us a back-up tank, and a couple of portable tanks, so that we can take her out of the house. These came with a fairly smart carry bag that goes on your back.

Excited with the thought of them coming home, I rang the Boss to tell her the good news, and to get her to ask to be discharged. That's where it all went wrong...

They couldn't find the doctor. I mean, this is a hospital, and they couldn't find the doctor! Unfortunately, without a doctor, Chaya Devoira couldn't be discharged. Furthermore, without a doctor, her medicines couldn't be prescribed.

Whilst trying to be as polite as possible, the Boss nagged them every few minutes until they managed to find the doctor. With that hurdle over, we had to sort out the medicines. Apparently, the pharmacy in the hospital has a turnaround time of four hours, putting it well into Shabbos. Thankfully, the nurses were on our case, and they managed to get this sorted out with about an hour to spare.

So, I set the bath going (as neither of us had managed one yet that day), and shot off to the hospital to pick them up. When I got there, I discovered that there was another hitch. For the last week in hospital, Chaya Devoira was on 0.1 litre/minute of oxygen whilst awake, and 0.2 litre/minute whilst asleep. Apparently you sleep more lightly when asleep, which was news to me as I thought you breathed more deeply, but that shows how much I know eh? Anyway, the doctor had prescribed 0.5 litre/minute, which seemed rather high to us. For those of you thinking that too much isn't a problem as long as she gets enough, it seems that too much can be as dangerous as too little, as if she gets too much, her body thinks that she has plenty of air and slows down her breathing, depriving her of nitrogen, the other main gas in the air we breathe. Apparently this is very dangerous.

So they had to find the doctor, and couldn't! Yup, this is the same hospital, and they couldn't find the doctor again - albeit a different doctor. Time was ticking away, and we were getting somewhat nervous. We tried ringing the home oxygen company, but they referred us back to the doctor. Eventually, we persuaded them to let us go home. The nurse was going to continue to try and see what she could find out.

We dashed to the car, and drove home as fast as the traffic and speed limits allowed. We arrived home 25 minutes before Shabbos, both needing baths, with loads of things to sort out before Shabbos. Unfortunately, in the rush at home, the running bath had been forgotten, so we had a small flood in the ground floor of the house!

Amazingly enough, we somehow managed to sort out Chaya Devoira's vast array of medicines and utensils, mop up the flood, bathe, dress and arrange ourselves in time for Shabbos. I'm still not sure how, but we did it.

Shabbos was wonderful. It was so nice having them both home again, even though we had to watch out for the oxygen tube that trailed around the house. We were never in doubt as to where Chaya Devoira was, you just had to follow the tube!

So, if anyone is feeling oxygen-deprived, just pop round to the Smile Gemach and have a whiff - we've got plenty :-)

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# Thursday, 08 January 2009

Isn't my time worth anything?

To add to the fun and games in the house, the dishwasher packed up on motzei Shabbos. I know these things are a luxury, but we were given it as a present, and with all the crockery and cups we go through, it's become an essential.

So, off I went on Sunday morning to buy a new one. They are very keen on being eco-friendly nowadays, so the dishwasher manufacturers are all competing to see whose dishwasher uses less water, less electricity, produces less waste, etc.

What they don't seem to consider is being economical with the owner's time. Our new dishwasher takes almost three hours to do a standard wash! I know I can just set it going and go do something else, but it seems a very long time, considering I could do it by hand in about half an hour.

We had the same thing when we bought a new washing machine a couple of years ago. The new one takes at least twice as long as the old one, but doesn't wash the clothes any cleaner!

Apparently my time isn't worth anything as long as we save the environment. Ho hum.

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Ho hum, still in hospital and Simcha mostly trained

Unfortunately, Chaya Devoira is still in hospital, so I haven't a lot to tell (unless you want to hear about the washing, shopping, cleaning, etc). She got over the virus reasonably quickly, and was only needing a small amount of oxygen to keep her breathing. We had high hopes of her coming home last Monday, but it didn't work out.

The frustrating thing is that she is only on the lowest level of oxygen, and should really be able to manage without it, but every time they try to take her off it, her levels plummet.

They are now organising an oxygen system for the house. I thought that this would be as simple as a canister of oxygen that we would put under her cot, but it seems that they don't do that. They have some fancy system that pipes oxygen around the house, so you can take the baby into any room and plug her in. Trouble is, they have to come and assess the house, then come back and install the system before they'll let her home. This all takes several days, during which the Boss is sitting in hospital wishing she were home.

On a brighter note, Simcha's toilet training went pretty well. We have had a few inevitable accidents, but overall she's getting pretty good at it. Another thing thing to add to my CV!

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# 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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