why I am so scared for my son to have a trach......

sewnostalgic · #1 12-09-2010, 09:29 AM

Hello everyone. I need some advice from all of you. My son Thurston has been constantly teetering on the edge of needing a trach. He had a gtube/fundo in October which went really really well and I couldnt have been more pleased with his progress and it got his o2 needs way down and he was able to come home on 1/2 a liter of o2 low flow cannula. That lasted 3 whole days when I tripped on the cannula(I feel horrible) and huge amounts of water went up my sons nose and down his lungs and he had to be readmitted to the picu. He got all the way up to 15 liters on comfort flow and then they were able to get him back down to 1/2 a liter a week later and we were slated to come back home and they were giving him those sweeties(sugar water) even though I told them he couldnt have them because he has a delayed swallow and aspirates and he had another aspiration event and now is back on ten liters. All of the doctors think this is just going to keep happening and that he has no reserve and he is just going to have to keep coming back to the hospital and that his first even little cold will put his life in jeaopardy. I am not afraid of the trach as much as the surgery, the after surgery recovery and the risk of infection. I had a friends baby who died of complications aftewr the surgery and I am of course petritied. My son has no airway issues he just has very bad lungs and so I am wondering if the surgery could also put his fragile body over the edge. But I dont want him rotting in a hospital bed either. He is very very far behind in everything, he was a preemie and he has some brain injury but so far at 6 months adjusted the physical therapist does not see any red flags as far as his muscle tone but I know that early intervention is a must when it comes to any hope of the brain rewiring itself and although he does see ot/pt in the hospital it just is not the same as what he would be getting from me and from being at home. I just dont know what to do. I would love your advice especially from BPD/Chronic lung kiddos and like I said I am not afraid of the trach itself but all of the complications and risks and infections that are associated with it. Thank you so much for all of your time and support.

kadiera · #2 12-09-2010, 10:17 AM

We too were all the way down to a 1/2 liter, but didn't make it home before the trach. Alexander was a 27 weeker, and had severe BPD/CLD, with pulmonary hypertension.

I think, for us, the trach was the best thing we could possibly have done. Alexander made so much more progress, developmentally speaking, when he wasn't exhausted from trying to breathe. It got him out of the hospital and home, where he's now 2.5 years and making progress.

Having a trach means an easy way to give breathing support in case of another issue, no matter what it is. Are there risks to a trach? sure....but you have to weigh the risks of what you're seeing right now against a possible problem from surgery.

JWorthington · #3 12-09-2010, 11:19 AM

I have to agree with Janet, having the trach makes a huge difference to the effort taken to breathe and gives the child a chance to develop. Sam was trached following airway surgery, but picked up an infection which caused CLD, he only had his trach so long because of his lungs and O2 requirement. he is now decanned and making excellent progress. yes, a trach is scary, but post operatively Sam's recovery was pretty straight forward and you will soon learn how to handle it. we will always be here to support you.

jamie · #4 12-09-2010, 02:06 PM

My son has a trach due to inabilty to swallow. He does not have airway issues or trouble with his lungs, but without the trach he would. I was really scared too, but it becomes easier and before you know it it is no big deal. Evan had three surgries in 3 weeks time. he had brain surgery, a peg tube, and a tracheostomy and of all the surgeries it was the trach surgery that he had no complications from.

Niff · #5 12-09-2010, 02:25 PM

It is very scary. The trach wasn't a choice for us, but an emergent necessity due to a rare airway anomally... but, as all of us can say, the trach has been a blessing and a curse. There are downsides to having a trach (suctioning, increased risk of infection, etc), but it also gives the gift of life.

s

faywrayy · #6 12-09-2010, 02:38 PM

A trach was a possibility for Kate from the very beginning and I resisted it to the last week. Ultimately, she was trached for upper airway obstruction. The surgery was difficult for me - I was terrified and feeling sorry for myself and for her. The recovery was straightforward and umcomplicated. She didn't have lung issues and was off the vent in a day or so, wearing an HME within a week or so and home 3 weeks later. No issues. Getting a trach allowed her to breathe easy, come home and get on with the business of growing.

Good luck!!

kshell · #7 12-09-2010, 03:49 PM

Natalie is an ex 25 weeker. She has Chronic Lung Disease. At her last extubation in the NICU she should have been able to stay off the vent. That's when we knew that in addition to CLD she also had airway issues. I will say they said we could try again before the trach but I was so done. It really is hard in the beginning but it was the best thing for us. It allowed her to start to develop. Natalie came home on a vent, I'm wondering if they feel your little one needs support other than the o2?

haikumama · #8 12-09-2010, 08:09 PM

Quote:

Originally Posted by faywrayy

Getting a trach allowed her to breathe easy, come home and get on with the business of growing.

Amen to this. My son was was a 28 week preemie and trached for airway issues. He does have CLD, though (that was most likely caused more from him getting very, very sick before he was trached, and from aspirating, than from being a preemie.) If we had known earlier that he needed a trach, it's possible that the worst of his lung issues could have been avoided.

Once he was trached and we were trained - and once we got over our initial hesitance to move him out of his bouncy chair (he just seemed so tiny and fragile), he flourished.

I'm in Austin, TX, too, by the way (and have donated items to Thurston's auction - yay!

) Please PM me if you want to talk more or get together to talk about trachs and stuff. I'm more than happy to meet for coffee or something.

Kari

Ainsley's Mom · #9 12-09-2010, 08:57 PM

I just want to offer

's. I know nothing about lung issues and how that is relieved with a trach. Just know it's a hard decision, but in many cases at some point it becomes clear that there is really no other option and so we make the best of it.

sewnostalgic · #10 12-09-2010, 10:56 PM

Quote:

Originally Posted by kshell

I'm wondering if they feel your little one needs support other than the o2?

There are no airway issues, just really really sucky lungs lol. Yea we have been dragging our feet but we have a care meeting tomorrow to discuss it. Yea I am kind of done with this hospital life, it is really getting old and I miss the dickens out of my son, he is just so interactive now and happy and kicking his feeet in excitement and he really is the squishiest baby you will ever meet I just have to get him home so we can be a family and for him to get better. Thanks for all of your advice and I actually found a thread where someone asked some great questions and all of you responded and everyone just seems so happy with the trach that I just know it is something we will really need to do and you all have really allayed alot of my fears. thank you again and I am sure that you will not be able to get rid of me now!!!!!