OmppusMom
TrachKid Profile
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Oona was born in May 2009. She is our only child. Right after birth she was diagnosed with Down Syndrome and AVSD as well as some other congenital problems with her heart (VSD multiplex, PDA, PFO). For a few weeks she seemed to manage well despite her heart condition. We were able to have her home after ten days in NICU. Unfortunately, she started to deteriorate and have difficulties with breathing. She was hospitalised on June 19th 2009 and has been in hospital since. Oona was diagnosed, first with laryngomalacia, then with tracheomalacia and finally with tracheobronchomalacia in July 2009. She had her tracheotomy on July 8th 2009.
The following night Oona suffered a bronchospasm and we nearly lost her. She was rescucitated for 14 minutes. Luckily, she recovered well without any noticeable consequence from the incident. She was ventilator dependent practically up until her heart operation in August 2009. After that she recovered well enough to be able to breath on her own.
Oona is now nearly a year old and she is a lively happy child. Unfortunately, she often suffers from different type of infection, probably also due to the hospital environment she lives in. For example, she suffered a very bad RSV infection which gave her pneumonia and lasted for almost four weeks. In Finland it is extremely difficult to get the help you require to care for a trach kid at home - we have not got any and so are forced to continue living our lives halfway between home and hospital.
Oona practices eating but will need to be fed via G-tube for a quite a long time still. Due to DS and the trach she is noticeably behind in many areas of development. Nevertheless, she progresses at her own pace and we are happy of every little thing that she learns. She has started to make different types of vocal noises in what seems to be a very controlled manner - this has lead us to hope a little for the first time that she might be able to be decannulated some time in the near future. She is our sunshine and we are so lucky to have her. She truly makes our life worth living!
Update July 2010: Oona was decannulated a bit over a month ago. She was exactly one year, one month and one day old when it happened.They were supposed to try it earlier, already in May, but Oona got a bad respiratory infection and it did not work out. Anyway, Oona's finally home and she's thriving. She recently started to sit up on her own and is now also pulling herself upright into sitting position. Her true character has been revealed once and for all now that she's home - she is a fiesty one!
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- Finland
