Relieved and inspired: my introduction

[rogerreal]

Finding this site and this message board is like breathing pure oxygen after cyanosis!

Let me introduce my self. I am a father to a 16-week beautiful girl who has been trached 5 days ago. Trying to understand her life after a trach, led me to this resource. As of today, she was diagnosed with multiple congenital anomalies. Right after birth in April 5, she was found out having cleft palate (bilateral). After about 30 minutes she had cyanosis and was immediately intubated and hooked on ventilator. She had pneumonia and underwent a two-regimen of antibiotics for 20 days. It was found out also that there was three holes in her heart: one that should close in the first hour (which did not), one on the upper part and one on the lower (VSD). Her VSD (ventricular septal defect) was measured to be 5mm. Pneumonia and VSD was kept in mind in providing care for her. The holes in her heart ultimately closed with the VSD down to 2mm which according to the pediatric cardio is not a problem at all.

Having the VSD and pneumonia, her difficulty in breathing can be explained. With the two controlled, doctors were baffled why she still had episodes of cyanosis. She eventually produced sound during inspiration (stridor). She was suspected to be having anomalies in the airways -- either laryngomalacia or tracheomalacia. She underwent laryngoscopy and it was found out that her larynx almost collapse during inspiration. From then, she was put on a prone position and a bit angled to relieve her which really helped her.

The problem is when she gets cold and other infection in the respiratory tract. Thrice she has been hospitalized for this. The first time, her larynx was so inflame that intubation was not possible. Instead she had tracheostomy last week of June. She eventually got cured of the severe pneumonia and the trach was removed.

Prior to this hospitalization, she was fed using Haberman to mitigate her cleft palate. But she was not gaining significant weight. She was born 2.8kgs band gain only up to 3.8kgs. She became lactose-intolerant and lose a lot of weight until finally, she shifted to soy-based formula. She can feed right but she was not gaining weight further. She just hovered at 3.5kgs. (All her energy was consumed in feeding)

During her hospitalization, she was put on OGT to help her gain weight. At the start of this hospitalization, she just weighed 3.2kgs but with OGT, she became 4.5kgs. At the start, the doctors are suggesting PEG to have it more long term but with the significant gain, they are ok with OGT. We were taught how to maintain it and how to change. Discharged.

After a week at home, she became cyanotic again. She was again diagnosed with pneumonia and treated with antibiotics until we are ready to go home. The night prior to our discharge, she became cyanotic again due to aspiration pneumonia. It was controlled and we were asked if we want to go home the next day. Shewas transferred to a regula room and we were just readying to go home the next day. Unfortunately, she became cyannotic twice in a 30-minute period. She was intubated and put on ventilator at the ICU. Her tests indicated that she is free from pneumonia but this time, her larynx got so unstable that it is collapsing uncontrollably. Doctors prescribed a tracheostomy for longer period until her laryngomalacia is resolved. In addition, she had G-tube insertion to augment and to help her gain weight (which is needed for her cleft palate operation and for the larynx cartillage to strengthen).

On the diagnostic side, DiGeorge syndrome was ruled out as she demonstrated she can fight infection (she has T-cells). Pierre Robin sequence was also ruled out as her tongue is not the one causing her breathing difficulty. The other thing being considered was the likelihood that her mother got viral infection during the first 6weeks of conception-- which has really happened. But we are still open to other genetic diagnosis.

This is from where we are coming. Right now, she has a 4.00mm trach (PED) and a G-tube. The extent of the care she need is really overwhelming, emotionally, physically, and financially. Getting to this web resource is a great help. I now strongly believe that there is life after trach.

By the way, we named our daughter Abbrielle Calleen. Abbrielle is Welsh meaning father's delight and Calleen is Australian aborigine meaning fresh water.


Faithfully,
Roger

[Ann]

Welcome Roger. Glad you found us. Yes, there is life after trach and you will find a wealth of information from the parents on this board. I look forward to getting to know you and your daughter as you travel this journey none of us hoped for, but which will lead you down some truly amazing roads.

[faywrayy]

Welcome Roger! Sounds like you've had a rough start, but yes there is life with a trach and we're all here to prove it!

Jump in anytime!

[My little figther]

Welcome!!! I am sure this is not the board you wanted to be on - quite frankly none of us wanted too - but you could not have a found a better place to ask questions and learn about trachs. There is a life with a trach - the road might by rocky at times but being with your child is a victory by itself.
Your daugther' s names are beautiful I am sure she is already dad's delight

Michelle

[KJKK8437]

Welcome! There is no more knowledgable and experienced (with trachs) set of people on this planet than these men and women. They have saved my sanity, and many others as well.

Trachs suck -- but they are manageable, and children do grow and heal. No matter which way your treatment goes, folks here will be able to understand and help.

[JWorthington]

Welcome Roger. I am sure this is a club you would prefer not to have to join, but you will find a wealth of support and information here. It may seem hard now, but you will soon get into a routine with it and it becomes part of everyday life. Not what you hoped for your daughter, but definitely doable. Make sure you take any offers of help from family and friends in the early days and if you have any questions, however silly they may seem, ask away here, there is usually someone who has an answer for you.

Good luck
Julie x

[alizesmom]

Just chiming in to welcome you and your family. This site is indeed a life saver. Feel free to ask questions and share information. We all learn from one another. God Bless. Karen

[haltec]

Welcome Roger. It's a tough road at first, but things do get easier and you'll ajdust to your new 'normal' way of life. We are all here to help with any questions you may have. Abbrielle Calleen is a beautiful name!

[drct1245]

Hi and welcome to the board!!

[Hope]

Welcome, Roger. Your daughter has such a lovely name!
Hope