Talk to me about tracheostomies

[LolaFerrarisleftboob]

Hello

My baby is in hospital now and one possible option being considered is a trachy to deal with his small nose and obstructed upper airway.

Obv we are trying everything less invasive first! Plans for overnight Cpap (which he is not tolerating, or Nasal stents/NPA which he did tolerate and made him look miserable too). But this has gone from a distant possibility to a possible option.

But can anyone tell me about what it is like to have a baby with one e.g. How it affects their development and how hard it makes your life.

I have pm'ed you Lola.

My niece has had one for 10 years and it saved her life.

My sister has been trained to do her care and it is normal for them now.

Getting carers and sorting school has been a challenge though because she always needs someone who is traccy trained with her.

She cant go swimming but other than that she does everything she did before but without stopping breathing several times a week!

She does have other life limiting conditions too so it hasnt been an easy ride for any of them!

Good luck

Thanks both. It's looking more certain now just need to get my head around it all. It's a bit step but hopefully will enable us to get ds home and start living some sort of life. In his whole life he has only had three weeks at home with us (out of 17)

Hi. My daughter had a trachy for six years. You mentioned nasal stents. Does your son have choanal atresia?

I can honestly say that a trachy is really the best way to go if obstruction is a major issue. My daughter has Treacher Collins Syndrome and has had many surgeries. She's now 15. Happy to talk through any questions and concerns that you have.

Thanks for your replies.

My Little man has midfacial hypoplasia and a floppy airway so it's a bit of a combo of those things causing the obstruction. It's mainly his throat muscles though I think. No diagnosis that explains these two things so all a bit random.

Is it wrong I'm actually looking forward to it now? I just want him to be able to breathe without it being like he's doing the 200m.

Will I be able to take him in the car by myself that's is one daft worry I have now....

Thanks for the replies and pms very kind.

Lola, you will be able to take him in the car by yourself.
You will have had lots of training and practice while you are in hospital.
I recommend getting a mirror so that you can see your baby's face whilst you are driving, not only so you can observe his colour but also his expression (eg if he is crying or struggling).
Always make sure your suction machine is fully charged before you set off, and make sure you have all the medial equipment, and carry extra supplies of suction catheters in the car (just in case you are held up for some reason).
Take a mental note of safe places to stop in your area, especially if you live rurally, and put the car seat on the passenger side so you can suction him safely.
Always have the apnoea monitor on in the car.
The first few times will be scary, but you will be fine.
Kindest thoughts for the coming few days.

Hi Lola, my son had a trachy for 12 years,he had it put in a few days after birth because he was born at 24 weeks only weighing a pound, and had chronic lung deasease, it's very hard work but work you get used too, specially when they have a cold, you can suction put away then it needs doing again, and as my son could not breathe well other than threw this, night time was also a complete worry one of us had to be awake with him all night,you also have a lot of equipment to carry with you everywhere you go, and unless people are trained with you, you can't leave baby with family, tapes need changing daily and the trachy weekly, I was not told about any of this untill after I had signed for the operation to go ahead, although he desperately needed it so to keep him alive id of signed anyway, but please make sure its the only resort before you go ahead, also because of the trachy they told me my son would never talk so I would have to learn sign language, however he did talk so we didn't need to, just unfortunately since he had it removed it's left him with a terrible stammer, I'm sorry if this sounds harsh but you need to no the truth, hope all goes well for baby

Hiya Elephants I appreciate it's going to be very hard but this needed to happen.

It is not good the ramifications were not discussed with you beforehand but what else could you have done.

I already have all that medical equipment to cart around plus oxygen and feed pump as my baby had an NPA. ?? luckily (?) my mother in law has a son with a trach so I will have at least one trusted babysitter. Not trying to be pollyanna about it but this is our life now so I need to make the best of it.

Trachy got blocked today in PICU and it was very scary but sorted quickly.

I am sorry you boy has these issues still with his speech. I am glad he was able to get rid of his trache.