nibbles...

i have been on the soft food diet for a few weeks now and also having protein shakes through my PEG they don’t half make you feel bloated! i have been eating skips yogurts things that melt on your tounge but in the last week i have been a bit braver and tried harder foods such as brussels pate and tuc biscuits they went down my throat easier.

in a few weeks we have an appointment to see professor turnbull we weren’t due to see him til next year but as i was in hospital for pneumonia he wants to see us sooner and get an x-ray on my chest and blood tests.

To dye for...

Having been home a week nil by mouth apart from formula drinks going through my PEG i was going crazy i wanted something to eat!! i hadn't  eaten for 3 weeks!

i was sooo glad that the time finally came for my appointment for the dye to down my throat to show that food was going down the right hole 

We had to go to Halifax as that was the only hospital that did it near us and they only do it once a week. Don't ask me why!

in the appointment they gave me a apron to put on just in case it got messy and i sat next to a x ray machine   (dont worry i took my cochlear implant processor off!)  they first fed me the dye on its own to check i could swallow liquids which went fine. They then  fed  they dye with some yogurt and then the dye with yogurt and bit of biscuit in. Although they were happy with them all going down the right hole ,they were worried that food sometimes "sat"  in my throat called "pooling"  and they were worried because sometimes it sits there too long that it could go down the wrong hole. They said as long as i had a drink every time i ate it SHOULD be fine but i have  to be careful not rush. 

They were happy for me to start having soft foods such as yogurts and scrambled eggs etc but not a big meal like fish and chips. they dont want me to go crazy eating everything! 

The motto is slow and steady wins the race! 

pneumonia round 2...

its been 3 weeks since i've been out of hospital suffering pneumonia again. i had good help in my local hospital the doctors were great knowing about mitochondrial disease  during my time in hospital they gave me neutralisers and oxygen to help my lungs clear which took over 2 weeks and i was nil by mouth the whole time because the doctors were worried about food and drink going in to my lungs  (i was gagging for a cup of tea!!)  all i could have was the apple juice i use to drink my anti depressants and little sips of water and spit it out they didnt want me to swallow it. I got so hungry i was jealous of other patients getting their cup of tea!!

 

i had the ocuupational therapists to help me get the junk of my lungs using a machine to improve my breathing and help me cough better (it involved me breathing in then sucking my air out which was scary because you feel like you cant breathe but it does the job!!) 

i also had help with walking again as i still felt weak on my legs after being bed ridden for a week and hooked up to antibiotics and water to hydrate me, the  hospital gave me a walker to take home which helped helped for the first few days til i got stronger.

The dietitians kept an eye on my wight by having my hooked up to formula going through my PEG and making sure i was nil by mouth.

After 2 weeks of being in hospital i was allowed home but i had to be nil by mouth for a further week as they were not sure it was safe for me to eat or drink til i had an appointment to show that food and drink were going down the right hole. 

Mito spoils my tea......

Sadly i must have caught a bug when i was at the lily foundation weekend as i could not stop coughing and we decided to go to to A n E as it wasnt letting up we thought i might just get some antibiotics or something like that but i got admitted that night for pneumonia  they gave me antibiotics through a drip as well as fluids i was in hospital for a week but even at home im suffering as im nil by mouth til i see a speech therapist and i have a fluoroscopic swallowing exam to see if food and drink is going down the right way. The drs told me that it might happen again unless we got to see someone but im finding it frustrating that i cant eat or drink i miss my cup of tea but i have to wait another week to see this speech therapist so ill have to wait and see what happens  

the lily foundation family weekend...

last month me and the parents went to the lily foundation family weekend and had a fabulous time i got to meet new families who have a loved one who is suffering with mitochondrial disease as well as meeting old faces too. There were lots of information on stalls that would help people with mitochondrial disease