Monday, October 27, 2008

CoughAssist as Royal Gift.

I added in my arsenal a new "weapon" that will help me to fight the disease. It is called CoughAssist and it proved to be a useful machine for other children that are fighting with SMA. CoughAssist clears secretions by gradually applying a positive pressure to the airway, then rapidly shifting to negative pressure. The rapid shift in pressure produces a high expiratory flow, simulating a natural cough.

Because of my muscle weakness I can not cough efficiently. It will surely help me a lot and hopefully keep me away from being hospitalized. I should have it earlier but my parents did not afford to buy it and so I received today as gift from a man with good heart...from a real Prince.

Doctor Cristian Tanase from Grigore Alexandrescu hospital came today and thought me how to use the Cough Assist...well actually trained my parents how to use it! I was scared that it will hearth me but it did not. I did not felt any pain and obviously I was able to clear more efficiently the airway paths.

Although it is so useful and used equipment, it is a pretty new device in my country (I think is the first). Maybe it will be useful in our hospitals as well! Maybe it would be good it the expenses for it would be supported by medical insurance for patient like me!

Saturday, October 25, 2008

First step to mobility and a + for my comfort

With the help from people with good heart I have now a new stroller and a laying system special designed for special children that have to fight this unfair war with a cruel and sadistic disease. The mattress seems to be very good for me and so...I fall a sleep in minutes after m&d put me on top of it....and I slept deep for several hours without even ask to be turn over.
The stroller will give me some mobility to move inside the house and hopefully if I will gain more power I will be able to go outside someday. For now I am happy that I can move few meters from my bed.

THANK YOU for all the good people that helped my parents to buy this equipment with money, advices and logistic (it is not available in my country)

Thursday, October 23, 2008

2 times close to ..."the END" today

Have you ever been in your entire life with the resources close to 0 (zero) and with the stress close to maxim? I think you have been.... I've been also, many times,... including today. There was a power outage for 5 hours and half and all our backup resources where close to 0 and our nerves close to 100% limit.  

Therefore, we discovered that in the current configuration the autonomy of our critical equipment is: 3.5 hours ventilator battery + 2 hours UPS. (5 hours and half instead of 8 hours as we originally estimated from the product specifications). We definitely  need to find a solution that will give as a longer autonomy.

Luckily the outage was during the daytime and we could get help from friends that brought us additional UPSs and batteries and power was restored in time and I could breath again...

Therefore my life is not only figuratively  hang on a tiny wire it is actually also hanging on a wire connected to power source.

Tuesday, October 14, 2008

7 minutes without ventilator because I was dancing :)

Yes it is true, it is a "world record" for me, today I was able to stay away from the ventilator for 7 minutes, and this is not all! During this time I was dancing with my mom and dad. I loved so much!I wish I would never return to my bed...

This was a Miracle....maybe I am getting stronger...maybe some day I will be able to stay up right and hold my mom in my arms...miracles happen every day ...all kind of miracles

Love y'all

Sunday, October 5, 2008

In the water again....I'm loven' it!

There is a long period of time since I could not do a bath in the bath tube. During this time I was washed like a medieval princes using an wet towel due to several restriction imposed for my safety. But today I was finally able to stay in the tube and ENJOY warm water and toys floating around me. This may seem trivial, but in my case it is actually an adventure and there are a lot of things that needs to be taken care of:

1. NO drop of water to get inside the trach
2. Do Not slip into the tube
3. Very careful with maneuvers of moving in and out of the tube
4. Reconnecting to the breathing circuit
5. Positioning
6. Very careful with the secretion not to go on the path airway
7. Careful with the g-tube (not sure if it is ok to go under water with it)

Anyway I loved it and I was actually crying when I had to go out because I wanted to stay more. My mummy had to promise that I will do another bath today after I eat just to make me stop crying. And you know what else I discovered? The bath tube that I was using 4 months ago is way to small for me now. Of course you realize that this means I have grown up! I definitely need a new bath tube.

In the water again....I'm loven' it!