Monday, July 28, 2008

I've got a new nose - it is called MR850

A new equipment was added today into the circuit a respiratory humidifier that plays the role of nose. Let me explain: Because I have to be ventilated through tracheotomy, my natural cute nose is bypassed and so the air does not pass anymore over a warm, ciliated mucous layer before passing to the nasopharynx. If the humidifier is not present in the circuit the air that is delivered into my lungs becomes dry and sometime not warm enough. This is not causing only my discomfort but it is also affects the properties of my path airways and will cause dehydration . That's why it is needed a respiratory humidifier for me now. The one that was choose for me is called MR850 from Fisher Paykel

Previously I had a humidifier connected to the ventilator in the hospital. One difference is that this one is now connected to the ventilator that I will use at home (hopefully soon) and another difference is that the new humidifier have some advantages on the existing one:
  • Control the quality of the air delivered to the patient: temperature and moisture
  • Automatic feeding with water from an external source
  • Alarms if anything goes wrong with regards to the quality of air or with the humidifier
I hope this new humidifier will increase the quality of my life until the air will flow again through my cute little nose.

Thank you RadiusMed for the special price offered for me and thank you Oxygenplus for helping me with connecting the humidifier to the respiratory circuit.

Love y'all

Sunday, July 27, 2008

110 minutes Sunday

Where are the good old Sundays when both mommy and daddy could spend all day with me? Well....I do not know, but I hope they will return.

What can we do in this days Sundays? We can sing, we can dance a little, I can learn mommy where is my leg, where are my arms, where are my eyes...I can talk with my birdie and tell her that I like candies and then time flies and the 110 minutes Sunday is over, my mommy have to leave!

Check out sequences from the 110 minutes Sunday today and please forgive my hairstylist (daddy) he was not allowed to get in today and I may not look too good because of that.

Love you all!

Friday, July 18, 2008

Preparations to Return Home - Step 1

We slowly started to prepare the transition from hospital to home. First step is to validate the setup that will help Alesia with breathing at home. The company that sells the ventilator in Romania - OxygenPlus - had the generosity to give us a setup with CARAT I Plus and the Oxygen Concentrator for tests in hospital before purchasing it. This is a very important help because it give us the possibility to test the compatibility, make sure that the device is easy to operate and it has all the features required for assisting Alesia with breathing. We learned a lot today about how to setup the equipment and which are Alesia needs in terms of ventilation.

Alesia stayed 12 Hours on the new ventilator and everything went fine. During this time she was happy and the only problem was that her pulse increased a little. Over night she was put back on the ventilator in ICU because the humidifier could not be adapted to the new ventilator.

The tests with Carat I Plus ventilator will continue in the next days and hopefully it will be a good choice for Alesia until a miracle will happen and she will not need the ventilator.

Saturday, July 12, 2008

Sad, discouraged and ... in prison

Disclaimer: The people in this post that are referred as "not having respect for life" does NOT refer to the medical staff of Grigore Alexandrescu Hospital. The medical staff from GA are referred as the ones that with their creativity can not compensate the " poverty, the indifference and in some cases the lack of hearth and respect for life of some other people" - people that created and maintain the medical infrastructure weak (almost as weak as Alesia) and in poverty in the majority of the hospitals in our country. Sorry for the confusion created!

Today I am a little bit sad and discouraged. I found out that love, devotion and even creativity of a few people can not compensate at all the poverty, the indifference and in some cases the lack of hearth and respect for life of some other people. I do not want to judge nobody because I am so very small and I am not in the position to judge. I just wanted to cry a little, and tell you that when I thought I started to gain the happiness back into my life and see a road to a better life in front of me, an old rule started to be strictly enforced. Another piece from my happiness has been taken away, and I have been sent to a maximum security prison....What have I done?

I will not refer to specific person or places because I think I might heart myself additionally One question I have for you though, Please tell my what do you think? Is it something good that is coming out from the following rule: I am only allowed for 15 minutes per day to talk with my parents (and this is only with my mommy)?

No pictures today because I am sad, I cried a lot and do not want you to see me like this.

Love you all!

Wednesday, July 9, 2008

Words are starting to come out again....

After more than 1 month of silence I can talk again. What a joy today.....words are coming out again and slowly I'm beginning to express myself not only with my eyes but also using my voice. It is still very hard because I need to do an extra effort to make the air escape the trach and pass through the vocal cords, and there are other obstacles as well, but as you know I am not giving up. I hope some day I will be able to read stories to other children as my mommy does every day.

Check my video below and see that I can kiss my mommy, I can show her where is the door, where is the window ...and I can say: "Tata"

First words after a long silence


Thursday, July 3, 2008

Medical Ventilator - The main equipment: How are we choosing it?

This proves to be a delicate task and there are some important aspects that needs to be taken into account and that probably will matter later on, for my quality of life. I did not knew in the beginning to much about ventilation, but I started to learn and with help from my doctors and cooperation from distributors I hope will be able to pick the right one

You are probably wondering what is a ventilator ?

"A ventilator, also known as a respirator, is the equipment used to mechanically assist breathing by delivering air to the lungs. Many people may be familiar with ventilators in the hospital setting, such as the ICU, where large complex acute care ventilators are used. The ventilators used in the home are small, lightweight and portable; they can be mounted on wheelchairs or carts or put on a bedside stand. Most of these operate on household electric current – some have internal batteries – and can be operated with external batteries. It is advisable to have a backup battery or even a generator readily available in case of power outages or emergencies."

Things to consider when choosing the ventilator Alesia:
  • Needs have all the ventilation mode I will need: Control, Assist/Control, SIMV, CPAP, BIPAP, NPPV
  • Needs to know several breath types: Volume Control, Pressure Control, Pressure Support, Spontaneous
  • Need to be able to provide the required parameters for my weight and age (tidal volume starting with 50ml, appropriate pressure)
  • Due to the small air volumes have to be possible to connect to small diameter tubes
  • Have to be small and portable enough NOT to keep me in one room because I'm hopping that I will be able to move around the house some day.
  • Need to have technical assistance available for failure cases and periodic inspections
  • Need to have easy available the consumables (tubes, filters)
  • Have to be quiet
  • Have to be affordable for my parents, although A LOT of help has been already received from friends - THANK YOU!
For now we are considering the following 3 options:
Hope we will choose the right one for me!


My first haircut in the ICU

I can not go to a hair stylist yet :), however today my personal hairstylist (a.k.a my mother) came with all her tools and gave me a new haircut and look.... but, hey do not worry, you will still recognize me by my smile and eyes:

Alesia and her new haircut!

Love you all,