new to trachs

[Tori's Mom]

I found this site when trying to find out more about trachs. My daughter just got her trach surgery this past friday. She's been in hospital since she was born (5 months ago, at full term, 10 weeks after we lost her twin sister in utero)...has had 2 open heart surgeries, and many more minor procedures, upper airway issues, and was finally diagnosed with tracheo and bronchomalacia and trached last week. We're hoping this is the last step to getting her home.
I'm afraid we're never going to sleep again. I am hoping to find out what caring for a trached baby at home is like, and other parent's experiences with tracheo/bronchomalacia, and the requirement for ventilation or not? Can't wait to learn more...thanks

[aclancey]

Welcome!!! I don't have experience with vents but I do have experience with sleep deprivation! I am so sorry you are having such a tough time. This is a great place to come and ask anything!!!

[Hope]

I'm sorry for all you've gone through. But let me say that many of us found that by having a trach, our children finally had a stable airway and were able to come home. Although it seems scary at first, you'll get lots of training in the hospital before you come home. Perhaps you'll have at-home nursing? That way you might get some much needed sleep and rest, I hope! (And I say this as a person who stayed up all night giving breathing treatments and meds to a sick Shelby. :( )And it gets so much easier after you're home. The first month or so is rough, but you'll get to know what's normal for Tori. I'm glad you found this board. You'll find lots of supoort here.

Hope

[TommysDad]

Tommy has severe Tracheal and Broncheal malasia. He is vent dependent, although, with the Dr's permission, we are taking him off for very short intervals each day. He has an extremely high peep due to the malasia. Our pulmonologist has indicated that time will ultimately be the best treatment for Tommy and as he grows and gets stronger, so to will his lungs. If you have any specific questions on vents, please feel free to ask. We do our best to give Tommy as normal of a life as possible even though he is on a ventilator. Many nurses and therapists are surprised when they come to our house and see Tommy because he is so active on his ventilator.

[TommysMommy]

Hi and welcome! I also have a son named Tommy. He has acquired severe subglottic stenosis as the result of being intubated for open heart surgery. He was born 7 weeks early and has another birth defect that affects his esophagus that caused a poor swallow. All of these factors caused him to fail extubation 3 times and a trach was our way out of ICU.

He isn't ventilated, but he is oxygen dependant due to lung issues. He wears the humidified trach collar 24/7.

Feel free to jump in an ask any question you have! You'll find that although all of our children have a different diagnosis and some require more care than others, caring for a trach child is doable and once you've become comfortable you'll find that the hardward just kind of disappears and you only see your child.

[alizesmom]

Hi and welcome. Sorry for the rough time you have been going through. The good news is that you can learn and even become comfortable with a trached child. Sleep will be your biggest issue initially. Ask for in home nursing if possible and see if any family members are willing to be trained to care for
Tori. The more who do the better it will be. Karen

[drct1245]

Hi and welcome to the board. I am not much help as Ayden doesn't have structural issues, he has severe BPD, but he did come home on a vent 24/7 after 9 months in the hospital.
see you around!

[lil' G's mom]

Hi! welcome were pretty new here also my son is ventilated and still hospitalized. You'll get used to caring for Tori, Just be sure to ask lots of questions and get in and do as much of her care while still in hospital. these ladies and gentelmen are a great help and support... And again welcome:)

[haltec]

Welcome. I'm sure you are very overwhelmed. We all were, but it does get better. This is a great forum with very helpful people!

[JWorthington]

Hi and welcome. It takes a bit of getting used to but life with a trach will soon become second nature to you. I hope you can get some nursing support. Hope you can get your daughter home soon - and don't forget - we are always here to help.

Julie

[Kira]

Hi, and welcome to the board.

[Tori's Mom]

Thanks everyone, for your words of encouragement...Tori had her surgery just over a week ago, and we are getting used to things. She is doing fantastic, and we are learning what helps her with suctioning. It is so wonderful to see her face free and her comfortable and able to breathe.
We are hoping to get a harness of sorts to keep the ventilator tubing in place (we are having trouble keeping it from pressing on her G-J tube, and keeping it out of the way of her arms, since she is still small - about 10lbs). Any suggestions from others on how best to deal with the tubing to allow more mobility?? Thanks again for all the support!