Week 1

Tuesday 21st October

04:30: Hummm... not quite sure whatís going on here, but I get the feeling someone might be trying to move me out....
13:00: ...ok, my head is getting squashed..this is starting to hurt now...
23:00: Ouch, now this isnít funny, if you think I can fit my head through that gap youíve got another thing coming.
23:52: OK, you were right, I was wrong, now just put me back in.

When can I go back in mum?

Wednesday 22nd October

Since making my exit I seem to have been poked, prodded, had needles stuck in me and generally messed about with. So far I have spent all but the first five minutes of my life in the special care baby unit at Warwick Hospital, it seems I need special care because I wonít cry and am a bit floppy. All most people want is a baby thatís nice and quiet, but thatís just not good enough for my Mum and Dad.

Thought I had better make a bit of an effort, so I opened one eye when Mum and Dad came to see me a few minutes ago..... knackered me out though, so I think Iíll have another sleep now.

Thursday 23rd October

Mum got discharged from the hospital but stayed with me most the day.

More poking about with needles which took it out of me, so I spent most the day snoozing. Mum and Dad got all excited as they got to cuddle me at last, but I wasnít too bothered by this so slept through the whole thing.

far too much excitement for me...

Friday 24th October

Today I spent the morning having secretions sucked out of my throat becuase I just couldnít muster up enough energy to swallow them. The senior midwife Jennifer kept tutting at me and telling me not to be so lazy, but I think she secretly likes taking care of me as she doesnít leave me alone.

In the afternoon I was struggling a bit. Mum tried to have a cuddle but it became more and more difficult to breathe, so Jennifer said I would have to be given oxygen, but this meant I would have to be transferred to another hospital where they could give me one to one care on a ventilator.

So - I got to travel very fast in an ambulance and was transferred to my new city dwelling in Birmingham, where I got to do my David Blaine impression - sleeping in a plastic box with no food and drink (only a glucose drip to hydrate and feed me). The new pad was OK I guess, but it made mum and dad a bit sad as I had to wear a hat which hid all my hair - secretly Iím quite glad, as it was getting a bit out of hand and could use a good wash and cut.

Saturday 25th October

I started the day very well, my blood oxygen level was at 100% and the consultant (Richard) came round to see me. It turned out he thought I might not be very active because the connections between my nerves and muscles might be slightly dodgy. He recommended they try a drug called Neosticmine, which might help prove if the connections need fixing. The consultant and registrar werenít sure how much to give me, so they opted for the biggest dose that was listed.

Not sure what it was is supposed to do, but all it has did for me is make me even more sleepy. So once it worked itís way out my system I felt totally normal (100 BPM and 100% Oxygen saturation in my blood).

Later in the day the registrar thought I was doing so well with my breathing he wanted me to breathe without any help. Trouble is, that meant they had to stop my Diamorphine supply, which made my chest hurt quite a lot. They took the tube out of my throat for a minute and cleared out my lungs as they were full of secretions. Trouble is, they forgot to mention I would actually then have to make an effort to breathe for myself and since I am not so strong, I didnít bother. So after I stopped breathing they flapped about a bit giving me air by Ďbaggingí me , then gave up and stuck the tubes back down my throat. Iím not so happy with this because it hurts a lot - give me the drugs again!
 

Sunday 26th October

Today was a very quiet day. They could not do anymore tests on me because all the labs are shut over the weekend.

Mum and Dad spent all day with me again and talked to the consultant about the tests they would start to do on Monday. I got to chill a bit knowing nothing eventful was going to happen.

Also, my antibiotics were stopped today, because the results back from the lab showed I donít have an infection.

ok I didnít choose the hat...

a guys gotta get his rest...

Monday 27th October

Iím doing well today, only needing 10 breaths a minute on air (21% Oxygen) from the ventilator. This means I am doing most of the breathing on my own. They wonít be taking my ventilator out for another couple of days though, just to be on the safe side. If I do come off my ventilator theyíll stop my diamorphine drip, which will mean Iíll be a lot less sleepy.

They are starting more tests on me today. To start with they will just be taking more blood to be sent off to the labs for analysis. Theyíll be looking for genetic disorders and chemical imbalances in my blood.

Hopefully Iíll be seeing a specialist called Dr Helen Roper later on this afternoon. Helen specializes in muscle weakness in babies and children. More than likely sheíll want to do some more tests on me, including a muscle biopsy, nerve conduction tests or a more detailed brain scan.

Iím feeding well today, having 2 ml of milk every hour. They feed me by squirting my milk directly into my tummy, because I canít swallow with the ventilator in my throat. Hopefully, if I keep feeding well, they will take the glucose drip off in a couple of days, but that depends if I am strong enough.

I opened one eye today, just long enough to have a quick peek at mummy.

 

Tuesday 28th October

Today, most importantly, they have changed the amount of food I am getting to 4ml an hour and they plan to increase it further as the days go on. In beer terms this is about 1/5 of a pint a day, not bad for someone only weighing 7lb.

Not much else has changed and I am still coping well with the very little oxygen, doing most the breathing myself. Later today theyíll be trying me on CPAP ventilation, which is a continuous pressure into my lungs rather than the oxygen itself. If I can handle this I might loose the ventilator totally in a few days time. :-)

Dr Roper couldnít come round to see me yesterday, but made it round first thing this morning. She unplugged me from my air and messed with my arms and legs quite a lot, including banging them with a hammer. Sheís not sure what is wrong with me so wantís to do a muscle biopsy on my leg, which means sheíll be cutting into me and stealing some of the muscle from my thigh. It is going to happen either tomorrow or Thursday, as she has to get the scientists from the university to come over to freeze the muscle as soon as it comes out of my leg (-70C, brrrrrr). Luckily I get a local anaesthetic so I shouldnít feel a thing. She should get the results back from the lab early next week, so it looks like I wonít be getting out and about for a while.

When my muscle gets sent to the lab theyíll be doing three lots of tests on it. Firstly checking the composition under a microscope, secondly checking the chemical balance and finally checking it out under an electron microscope. The final test might take 3 or 4 weeks to come back, but the other two should come back within a week.

Also, Dr Roper thinks the results of the blood tests will come back negative, because the two genetic conditions they are testing for donít match my symptoms. She said my condition could be described as Congenital Myopathy, which could include a whole host of different things, but the tests should help to find out exactly what.

Afternoon Update: They changed my ventilator to CPAP ventilation this afternoon. I handled it very well so they then decided to take the tubes out of my mouth and use a nasal CPAP machine.

When the tubes came out I managed to breath on my own without any help at all, so they decided I didnít need any assistance. They are now pumping a little oxygen into my incubator to keep me happy, but thatís it. Also, I hope you havenít forgotten but itís my birthday tonight, HAPPY BIRTHDAY TO ME, I am 1 week old at 23:52.

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