Jonah
TrachKid Profile
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Jonah was born on 2 September 2008 in Nambour Hospital. He had a stridor from birth and was immediately flown by helicopter to the Royal Brisbane Womens Hospital. He was later diagnosed with vocal cord paralysis and had a tracheostomy put in at 5 weeks. Jonah is now 6 months old and has been in and out of hospital several times with pneumonia, bronchilitis etc. I'm so over going to hospitals!!
Jonah had a bronchoscopy done last week which showed no improvement on his vocal cords. We were devastated. I am truly inspired by your stories, especially the ones about Dr Cotton in the USA performing lateralization surgery on kids with vocal cord paralysis, leading to decanulation. It gives me hope that there might be a plan B in the future if Jonah's vocal cords don't start moving on their own. Please feel free to e-mail me at anthony.stephens@bigpond.com
14 July 2009
Jonah is having open posterior cricoid split and rib grafting surgery on 24 August in Perth, Western Australia with Dr Shyan Vijaysakeran. Dr Cotton from OH in the USA referred me to Dr Vijay via e-mail and after flying to the other side of Australia for a consult and bronch I am most impressed and excited about Jonah's surgery. Finally a plan and a light at the end of the tunnel! He is having the surgery open not endoscopically, due to a stoma collapse that the surgeon is going to 'fix' up at the same time as the rib grafting. Because of this website I was able to research and inquire about surgery options that my current ENT surgeon told me nothing about. Only 6 more weeks of suctioning..... the count down has begun!
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The tracheostomy is out!!!!!!!!!
5 November 2009 - 3:14am — AmberOn Oct 26 Jonah had an open posterior cricoid split with rib graft sugery (and a graft to fix his supra stoma collapse). It worked!!!!!! I will be forever grateful to Jonah's brilliant ENT surgeon Dr Shyan Vijayasakaran at Princess Margaret Hospital, Perth, Western Australia. Less than a week after the surgery Jonah was breathing on his own, drinking his bottles, eating pureed food and crackers, vocalising and playing like a normal 14 month old. He is completely tube free and only has a little dressing over his neck where the scare is healing. He still has some stridor, but apparantly that is expected from the swelling of the surgery. After all he's still learning to cough/swallow his own secretions with his new airway. I am the happiest mother in the world. I knew this day would come eventually.....It feels so strange to take him around the hospital and not have to bring the suction machine etc etc. Even giving him a bath without having the suction machine on standby was sereal! Flying to the opposite side of the country for the surgery was worth it a thousand fold. Hearing Jonah cry is music to my ears. It feels like a dream. If I'd listened to my ENT surgeon in Brisbane, QLD Jonah would still have the trach for at least another year and then things were still up in the air. Don't be afraid to seek a second opinion. Because of this website I learned about other surgery options that were not offered to me and I was able to find a surgeon able and willing to operate on Jonah. It was the best decision I ever made. Thank you for all the support from the bottom of my heart - Amber xx
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I hate swine flu
25 August 2009 - 12:16am — AmberJonah's surgery has been postponed till Oct 12 due to the increase of swine flu. There are too many kids in the hospital with swine flu, therefor being too risky for Jonah. I know safety comes first but I can't help feeling deflated - we were so close....more waiting. I am so over this! Jonah will be 1 year old soon and I'm planning a big party with family and friends at the park - I need something fun to look forward to.
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| Title | Poster | Replies | Updated |
|---|---|---|---|
| The tracheostomy is out!!!!!!!!! | Amber | 2 | 2 years 11 weeks ago |
| Our Dr. Visit today. | Tiggerifficfun | 2 | 2 years 16 weeks ago |
| I hate swine flu | Amber | 2 | 2 years 18 weeks ago |
| I need info about Endoscopic Posterior Cricoid Split with Rib Graft | tenieciaw | 1 | 2 years 49 weeks ago |
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I understand your sleeping dilema - Ive been there myself!
All I have to say is - WOW!!! I thought the medical system in the US was bad until I read your horror story! I hope that since the article in your local newspaper was run that things got better for you. I have an 18 month old that has his trach since he was 3 weeks old. I know what its like not getting sleep. We have nurses that take care of my son thanks to our medical insurance and Medicaid (state run medical assistance) but there is a shortage of nurses. Although we have coverage through our insurance plan - filling the shift are difficult. I used to hear the same from my family - put him down in his crib and get some stuff done that you need to or just sleep when he sleeps. They don't understand the work involved with taking care of a baby with a trach. They don't understand taking care of a baby that needs 100% attention - awake or asleep! However, I have a tip for you. My son seems to have a similar case as yours - Vocal Cord Paralysis with no other illness/medical problems. When he was about 9 months old we downsized his trach to a 2.5 - which his doctor wasn't even aware of. When we did that we were able to get him a Montgomery Valve which allows him to breathe in through the trach and out through the nose/mouth. And this valve is specially designed with a release if he coughs/sneezes. Once he was used to that valve we upgraded to a Passey-Muir valve - very similar to the Montgomery but does not have the feature to release when he coughs or sneezes. The great thing about both of these is my son was able to learn how to swallow his own secretions and also is able to talk. Therefore, cutting down on suctioning. In the beginning he would wear the Montgomery Valve when he was awake and we would put on his trach mist collar when he sleeps. Now that he has the Passey-Muir valve he wears it 100% of the time, he rarely needs to be suctioned and doesn't use the mist collar when sleeping. There are some days that he is just too dry to go with out it but those are rare. My husband did most of the research and was able to find the 2.5 trach online (Bryan Medical). And my husband was the one who found the info on the Montgomery valve...if he didn't do the research I don't know where Clintons progress would be today. We have tried to decannulate Clint 4 times now with no success - although we are getting close. Last time we tried we had the trach out for 3 days before we decided he was working too hard to breathe, at times. Also - the Montgomery Valve made bath time much easier...it helps keep the water out! I can take a washcloth and wash his hair by squeezing the water out of the cloth a little at a time. I hope that these little tips help you and if you have any questions - please email me - Tiggerifficfun@aol.com
Lauri
3 (?) weeks and counting!!!!!!
Hey Amber -
Is it 3 weeks? - or less? I know you are probably keeping track of the days and hours left for Jonah to be decannulated! It must be very exciting...cant wait till this day comes for us. Last Thursday we found out there is an end in sight for us!! :) We spoke with Clintons Dr about the same surgery that Jonah is having. If Clintons Vocal Cords arent moving by next spring - he will do the operation. He wants to wait until he is 2 and that is in December - but doesnt want to do this in the winter - so we will wait until the spring! Keep that baby well...dont let anyone near him that is sick...I know Clintons Dr wont do the decannulation or operation if he has been sick a week or 2 prior to the procedure! You are in my prayers!!!
Thanks Amber
Hi Amber,
It was so lovely to chat with you yesterday. Thank you so much for putting us on to trachkids. All the best to you and your beautiful family. Good luck in Perth.
Mel