Thursday 22nd July....Off to Brompton...

Early start today....

its a hard day...

Last week when we went it took us 2hours to get there and that was midday. Today we need to be there for 10.30am, right in rush hour!! As we are staying the night there Grandad Bish is taking us and Grandad White will pick us up tomorrow. 7am gramps arrives. Mummy has just finished feeding me and daddy is now getting me dressed while mummy makes sure we have everything we need, its mainly my stuff. Mummy and gramps load the car up and 7.30 we're off. And so am i, off to sleep. I know i didn't wake up long ago but its tiring being this gorgeous hahaha ;) We arrive in plenty of time, about 9.30 so me and m & d wave off gramps and we go to the hospital cafe so they can have breakie. My time here is very exciting, i eat, have a poop and a wee then i snooze a little. Then i feel hungry again, but with all these different people coming in and out i don't think mummy has realised....Ill give her a nudge and scream.... that's pretty much how my 2 days go....

after a long day, me and daddy pass out...

We met lots of different people.  Firstly Katie, our cf nurse for the 2days. She pops in and out after everyone making sure we, i mean mummy and daddy, understand it all. She is very nice and explains alot about cf. So we met the dietitian who explains all about the digestive system part of cf. Because my pancreas doesn't produce the enzymes to break down and store the fat and protein in food, i will need to have something call Creon before anything i eat. Its ok, its like gravy granules. Mummy is told to give it to me with a little teeny tiny bit of apple puree, it goes down a treat. I start taking it today. As i start eating more, mummy and daddy will have to give me more. At least now, i should be storing all the fats and should start to gain a little weight steadily. Next we see the physiotherapist. She explains all about the 'tapping' on my chest m & d will need to do. I don't like this, it doesn't hurt, its just boring and a bit uncomfortable. I have to have this done for 15minutes, twice a day. We see the consultant, not sure what his role was. He just done alot of talking about the condition in general. As we started later today (not till about 11.30) that's all so we are left to ourselves for the evening. We watch a bit of tv then head off to the high street to find somewhere for m&d to have something to eat. I have had a long day so sleep the whole time, gave them a bit of time together. Then its back to the hospital to settle down for the night.....

snooze...

The next day we see all the same people, recapping yesterday and seeing how the Creon and physio went. I think m&d done a fab job. Didn't even realise they done the physio, think they done it in my sleep. We also saw a lady about the different benefits m&d can claim. Things like the congestion charge can be claimed back, every little helps. She will be there to help with things like disability living allowance etc. Then we saw a councillor. She offers support on our blue days and gives encouragement when you feel down. Lastly we say the pharmacist. He came in with what looked like a big bag of sweeties....how wrong could i be. He explained all about the medication i would need, starting today, and how it would change over time. So not only do i have the Creon and physio, i have to have antibiotics twice a day and 2 different vitamin supplements once a day. They show m&d how much and how to do it all now.....YUCK!!!!! These antibiotics are horrid :( the vitamins are quite tasty though. Oh well its just something iv got to put up with now.

Its 3o'clock now and we are all done and gramps white is ready and waiting to take us home.

Mummy and daddy go at it alone.....

That evening it was time for my yummy (joke) antibiotics and physio. This certainly is going to take some getting used to. But thats life....

Wednesday 21st July....back to see Sue for a weight check

8 days after the last weighin....

So 8 days ago i was exactly 7lb. Mummy has been feeding me up good and proper, she will not be happy if i havent gained any weight. Here comes the dreaded cold plastic bowl on my naked tooshie.....WOOHOO gained 4oz, half an oz a day :) 1 more oz and im back to my birth weight. Sue said she could sign us off to the health visitor but mummy likes coming here so we are going to come for 1 more week. We are all off to Brompton tomorrow for m & d's training. Wonder who we will meet...

Thursday 15th July....First time at Brompton...

Off for the sweat test....

cuddles with daddy before we set off

I'm back....so me, mummy and daddy go for a long drive to South London. I was a good boy and slept the whole way. I woke up when we arrived and I must say, it's very posh. Dosen't look like a hospital at all, until you get to the rooms or wards of course. We was met by a lovely lady called Jackie. Like Pat she is one of the specialist nurses there, along with Katie and Vikki...we meet them later. Jackie attached a little device to my arm for a few minutes to make it hot and sweaty, this was quite uncomfortable and i did cry....just a little though. Then she took that off and strapped something else round it to draw in the sweat. She then done the same to the other arm. I was a bit fed up by now so I thought I would let them know with a screaming fit. The little thing that takes in the sweat stayed on for about half an hour, this was fine, didnt really feel it. This was lunch time for me anyway so I was happy. Jackie then took it all to the lab to investigate and after about half an hour she was back with the results. M & D was prepared for the answer, of course it came back posative...I have got cystic fibrosis :( They all had a little chat about what happens next, I was slowly nodding off, still feeding :) We are to come back next week for 2 days so m & d can have their 'training' and start me on the meds....

Wednesday 14th July....The day our lives changed for good....

This was me 2days ago, 2weeks 3days old....

...loving the hat mum!!

Daddy went back to work yesterday :( but I'm looking after mummy, she is doing a great job. About 11o'clock the phone rings. I hear mummy say hello Elizabeth. Elizabeth is our health visitor. I think she takes over our care once Sue signs us off. I'm guessing she is coming to see us as mummy ends the conversation with 'see you later'. I have to guess this stuff because mummy never tells me, I mean why would she...I'm only her son!! Mummy then rings Daddy to tell him. Again I'm guessing here, but I think daddy is coming home early. I wonder whats going on.....yawn......

I wake up from a lovely sleep to see Elizabeth staring down at me....argh.....how long has she been watching me!!! Ahh theres daddy...he looks sad.....mummy is crying....what has happened, I'm the one that is supposed to do the crying!!

I'll pass you over to mummy now as I get a little confused....

Well Elizabeth came with a lovely lady called Pat. Pat is a nurse at the Royal Brompton hospital. After a few minutes chit chat Pat begins to explain why she is here. It is 2 weeks to the day since Ethan had the heel prick (blood taken from his foot for tests) and something had shown up....that he has Cystic Fibrosis. Now like most people we just said oh ok, whats that. We knew nothing about it at all. Pat is a specialist nurse trained in cf, hence why she came. She explained as best she could but we done most of our leeaning over the next couple of weeks.

What is Cystic Fibrosis....

CF, is an inherited disease of your secretory glands, including the glands that make mucus and sweat. "Inherited" means that the disease is passed through the genes from parents to children. People who have CF inherit two faulty CF genes—one from each parent. The parents likely don't have the disease themselves. CF mostly affects the lungs, pancreas, liver, intestines, sinuses, and sex organs.

Mucus is a substance made by the lining of some body tissues. Normally, mucus is a slippery, watery substance. It keeps the linings of certain organs moist and prevents them from drying out or getting infected. However, if you have CF, your mucus becomes thick and sticky. The mucus builds up in your lungs and blocks your airways. The buildup of mucus makes it easy for bacteria to grow. This leads to repeated, serious lung infections. Over time, these infections can severely damage your lungs.

The thick, sticky mucus also can block tubes, or ducts, in your pancreas. As a result, the digestive enzymes that your pancreas makes can't reach your small intestine. These enzymes help break down the food that you eat. Without them, your intestines can't fully absorb fats and proteins (hence the weight problems to start) This can cause vitamin deficiency and malnutrition because nutrients leave your body unused.

CF also causes your sweat to become very salty. As a result, your body loses large amounts of salt when you sweat. This can upset the balance of minerals in your blood and cause a number of health problems like dehydration, increased heart rate, tiredness, weakness, decreased blood pressure, heat stroke, and rarely death.
You're also at increased risk for diabetes or a bone-thinning condition called osteoporosis. CF also causes infertility in men, and it can make it harder for women to get pregnant.

The symptoms and severity of CF vary from person to person. Some people who have CF have serious lung and digestive problems. Other people have more mild disease that doesn't show up until they're adolescents or adults. The symptoms and severity of CF also vary over time. Sometimes, you will have few symptoms. Other times, your symptoms may become more severe. As the disease gets worse, you will have more severe symptoms more often.

Lung function often starts to decline in early childhood in people who have CF. Over time, permanent damage to the lungs can cause severe breathing problems. Respiratory failure is the most common cause of death in people who have CF.
As treatments for CF continue to improve, so does life expectancy for those who have the disease. Today, some people who have CF are living into their forties, fifties, or older. Early treatment for CF can improve both your quality of life and lifespan. Such early treatment includes nutritional and respiratory therapies, medicines, exercise, and other treatments.

So, although it was very upsetting finding out that your 2week old baby has a life threatening condition, now is the best time to find out so we can start treatment and prevent any infections so early on. We have to go down to the Brompton Hosp tomorrow just to have it confirmed by a sweat test. Very rarely does the sweat test show that the blood test was wrong and infact cf is not present. But we can hope....

Friday 2nd July....back to Sue for a weigh-in

1 WEEK OLD TODAY.

As agreed on Wednesday, we are back to check my weight. So there goes mummy, stripping me off once again, I guess i chould get used to this, and in the cold plastic dish. Mummy is smiling, could it be good news....."he put on half an oz" Sue says. 6lb 11.5oz Yay!!! Only a little, but a gain is a gain. Back on Monday she says to see how im getting on....

Monday 5th July......

Comfy on mummy & daddys bed 

Back to Sue, naked in the dish. This time I manage a small wee....hahaha....serves you right!! Mummy is laughing at me :) well mummy has been feeding me like mad all weekend, I feel like all I have done is eat, sleep and poop!! Ahh thats because that IS all I have done! Not good, I have lost 1oz I am now 6lb 10.5oz. I don' get it! Neither does mummy. She feels like she is doing something wrong, "maybe I'm just not producing enough milk". Sue tells her not to be silly and that I will eat as much as I want to, and I do. Little did mummy know, she was doing a perfect job and the weight loss was nothing to do with her. Sue says maybe mummy needs to stretch my little tummy a bit. Huh?!? "try topping him up with a bottle, just to get the demand higher". I thought I was quite demanding, obviously not enough.

Drying off from the bath  

So over the next week I am having my normal feed until i fall asleep, then mummy wakes me up and sticks a bottle in my mouth and I have more milk, tastes a bit different though and it takes me a few days to get used to it. M & D are laughing at the faces I pull. Strange though, every now and then I look up and see daddy feeding me, must be giving mummy a break.

Snuggled on mummy after my bath...night night...

Tuesday 13th July.....

Weigh in......WOOHOO I am now 7lb. Something is working. Mummy got a bit upset like she was failing, but after a little chat with Sue she cheered up, for now anyway...

Day 5 in the world...Wed 30th June

So I have been in the world a whole 5 days now. Quite different to what I have been used to but I have a wonderful mummy and daddy looking after me. I do love my sleep at the moment which you would of thought m & d (short for mummy and daddy) would like, but she keeps waking me up....to feed me :) can't complain at that. Today we had an appointment with Sue, the midwife, for a check up.When we got there mummy strips me of naked, even takes my nappy off, and puts me in this really cold plastic dish. I did try and squeeze a wee out, payback for waking me up and making me cold, but there was nothing there! Apparently, I have lost quite a bit of weight. I was 7lb 5oz when I was born and now I am 6lb 11oz. I heard Sue tell m & d that that was quite a loss and to go back on friday to check it again. Next thing I know im getting dressed again, ahhh.....or so i thought. All of a sudden i get this little stab in my foot, ouch!! I dont cry though, im hard like that :) back in the car and I'm asleep before the handbrakes off.....