# 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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# 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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