New father to the boards.

[Doug-Iowa]

Hello Everyone,

First off thank you for this site. My wife Jarita and I have a 4 month old son who developed a hemangeoma in his trachea. This developed at 6 weeks of age. We have up until yesterday treated it with steroids off and on. After doing a scope of his throat yesterday the doctor, my wife, and I decided for safety reasons to do a tracheostomy. Mason was on a ventalator overnight, and was breathing over it the whole time. Today we have had him just with some oxygen assistance. He seems to be adapting to breathing through it very well. It will take some time for us to adjust but we are doing well so far. Mason will remain in intensive care until next Wed. I would like to invite you to visit his web page so you can know who I am talking about. Mason's Web pages

Any advise we can get we would surely appriciate. Again thanks for this site. It helped prepare us for yesterday and I am sure will continue to help us as time goes along.

Doug, Jarita, & Mason Heidebrink
Ottumwa, Iowa

[sandra]

Doug,

I hae found amazing support on this board. Welcome! I hope everything works out wonderful for Mason.

[Jacob's Mom]

First I just want to tell you that you have a beautiful baby boy. Congratulations to you and your wife. Second, I want to say that no matter how overwhelming everything seems right now, it DOES get easier. I wish I had found this board earlier and had people to tell me that.

There is tons of great support and understanding here!!

Good luck with everything.

Hello,

We found this website through our Dr.Ramachandran from the first day of Leela's trach. She has subglottic stenosis. This site is such a ton of strenght to face each day of trach life and the support you get is amazing. Take one day at a time to get used it. Do remember your child is breathing easy thru the trach though you are going thru pain seeing it.

reg
Muktha

India

[christyw]

Doug,

I'm so glad you found this website! You may have issues and questions that arise from day to day after you come home with the trach, and this place has been excellent at helping me and others with everything. So many here have had various experiences, and it is so great to be able to know what other parents REALLY have gone thru with their kids. The docs are great, but the parents really know all about it! They live it each day with their kids.

I haven't checked Mason's website yet, but I wondered if the hemangioma would later be removed?

Christy

EDIT: THE WEBSITE IS GREAT, HE IS ABSOLUTELY GORGEOUS!!! THANK YOU FOR SHARING ALL THE PICTURES.

[abby]

Welcome and thanks for sharing pics of your beautiful baby!

[Stefan & Jennifer]

Doug,

Welcome--the trach stuff at first was overwhelming to us, but not having to see our son intubated and breathing and sleeping comfortably was worth all the initial fears and worries.

Now, we take the normal precautions when we go places, but we have decided that we are not going to hole ourselves away with our child just because he has a trach and craniofacial deformities. Packing a suction machine and emergency supplies for any trip, even to a nearby restaurant is just part of the routine now.

Hopefully your son's trach will just be a temporary aid for a little while. All the best of luck and check here often for advice and support.

[Olga]

Hi
Welcome to the website. I have found it so helpful and supportive. Your story sounds exactly the same as we have been through. Grace was trached at nine weeks for a subglottic haemangioma and was decannulated just before Christmas at three and a half years of age. She has had no surgery at all, the thing just shrank back of its own accord. I write this to give you hope. The first prognosis was that she might keep the trachy for 18 months to two years. It took a little longer, but at least she is trach free now. We were told that prolonged use of steroids could cause diabetes later in life, so a trachy was a much safer option. I wish you luck. You will soon get used to the routine of trachy care although it may seem overwhelming at first. I couldn't find out much about haemangiomas - even doctors don't know much about them, but if you have any questions feel free to email me.
Best wishes
Olga

[Doug-Iowa]

First let me say thanks for the warm welcome. It sure seems Mason is much more ready to accept this change than Jarita and I were. All is going very well so far. We are doing well with keeping the trach suctioned and clean. It sure is going to be a change at home. But both Jarita and I are ready to do whatever we need to.

[quote]I haven't checked Mason's website yet, but I wondered if the hemangioma would later be removed?

Right before they put the trach in the did laser surgery on the hemangeoma. We will return to Iowa City for laser surgery every 6 weeks, as of right now, to trim the hemangeoma from his throat. With this they can tell how fast and how much it is growing. They won't completely remove it because of the damage they could do to the lining of his throat. When it has stopped growing them he should be able to have the trach removed. As for a time frame we really don't know. They are telling us possibly by the time he is a year of age.

The really great thing is he is young enough he doesn't even know this isn't the way life is suposed to be.

Again thanks for the wonderful welcome.

Doug, Jarita, & Mason Heidebrink

[Olga]

The last comment you made is particularly true. A trachy is "normal" for most of the kids here as they don't know anything else. A word of caution. Grace's doctor (one of the top 3 doctors in the UK for this sort of thing) was reluctant to laser Grace's haemangioma because of the risk of scar tissue it causes. He was only going to do it if the haemangioma didn't start to shrink. He even said that LTP surgery caused less scarring than lasering. I know no trachy is preferable to having one, but his view was leave it alone unless there was no other option. I hope you don't have to wait as long as we did. Best wishes. Olga