Does anyone have a child with a trach?

iVillage Member
Registered: 06-06-2006
Does anyone have a child with a trach?
3
Wed, 10-18-2006 - 9:13pm

My son ILyaas, is 17 months, just to give you a brief summary, he was brain injured at birth and as a result has, Cerebral palsy, Is fed through a G-tube(he can't swallow), has cortical visual impairment, hearing impaired, has a seizure disorder and myoclonic spasms, and has a history of aspiration pneumonia(this happened before the G-tube/Nissen fundoplication, when they discovered he has severe GERD. He was hospitalized for 5 months after his birth, he spent 5wks intubated and 2 months on the nasal Canula. We have been in and out of the hospital because of pneumonia and respiratory issues, since he came home (about 7 times). Well he was hospitalized recently for several apnea episodes(where he stopped breathing and turned blue). We (my husband and I) had to perform CPR on him. This has been very frightening and traumatic for us. Well everytime he is hospitalized the DR.s ask us have we thought about him having a tracheotomy. We just have been hesitant, and unsure, while he is breathing on his own, and doing well, when he is sick it seems as though it is becoming harder and harder for him to manage his secretions(we have a portable suction machine at home that goes everywhere he goes). I have really been in turmoil about this and wish I could make a firm decision on whether or not this procedure would be beneficial to him. HELP!! Any advice or comments would be welcome.

TIA, Saara mom of Naim 8, Ahsan 6, Ilyaas 17 mo, EDD 1/30/07

iVillage Member
Registered: 02-02-2006
Sat, 10-21-2006 - 5:41pm
Hi, I have a 6 year old with the exact same issues as your son, accept for the hearing. My daughter has had several aspiration phneumonias as well. The decision to trach is very personal and really about the quality of life the child will have after the decision is made. Jenna has a g-tube/nissan, vp shunt, baclofen pump and so many issues in general. She can't walk, sit up, or hold up her own head. But my husband and I have decided that if she wasn't able to breathe on her own, her quality of life would probably be over. Right now she is breathing unassisted without oxygen, but these winter months are approaching quickly and I am so worried about it. I also have four other children to consider, so all of our time in the hospital and living with nurses is time taken away from them. It is just a messed up situation to be in, I completely understand. Just remeber, you have to be able to live with this decision for the rest of your life. It is a terrible way to think about it, but people like us have to. When you are really faced with a live or die situation, your heart and your God will guide you through it I am sure of it. If you need to talk, email me at Michmom4xs@aol.com. Hang in there.
Hugs,
Michele (Julia 7, Jenna 6, Nicholas 5, Christian 4, Olivia 08.28.06)

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iVillage Member
Registered: 06-06-2006
Thu, 10-19-2006 - 3:59pm

Thank you so much for your response blest!! I really am in turmoil, after talking to my mother last night(she was a geriatric nurse for a few years), and our Pediatrician( she was very positive and helpful), I'm pretty close to coming to a decision. I just have to wait until my husband gets home from work and talk to him. You definitely help me look at things in another light. The fact that Ilyaas can't swallow is a big factor in coming to a decision. I keep hearing the Dr. (who was following him when he was hospitalized after birth) voice saying" Saara, Ilyaas cannot protect his airway, this is something you need to consider", I remember this sentence and it keeps playing over and over in my head. Anyway thanks for your input, I apreciate it soooo much.

Saara mom of Naim 8, Ahsan 6, Ilyaas 17 mo, EDD 1/30/07

iVillage Member
Registered: 06-09-2006
Wed, 10-18-2006 - 11:03pm

Saara,

I can well relate to all that you've written. Moise spent his first two years of life in and out of the hospital with open heart surgery, GERD, and seemingly ever present aspirate pneumonia. He is also deaf, has CP and MR. He spent weeks on the vent and had G Tube-Nissan. I am pleased to say that we no longer have the G Tube. After several life threatening episodes we also had to make the agonizing decision of whether or not to trach him. Keep in mind that every situation is different, every child is different, every parent is different. What's right for one may not be what's right for another. My husband and I made the decision not to trach him. For us it was a quality of life issue. It seemed that the more machines/tubes we put him on the harder it was for him to bounce back. However, Moise was able to handle swallowing his own secretions-therein lies a huge differnce bt he and Ilyaas. Moise is now (at 6 years old) eating on his own and loving every minute of life.

There was a child in one of Moise's classes who had a trach and it was life saving for him. He was a wonderful, ornery little boy.

The decision of whether or not to trach is so dificult. A decision that only you and your family can make. When we made our decision we put the decision in writing with all of our reasons for the choice. We knew that in making our decision not to trach we were accepting that someday we may not be able to save him from one of his episodes. All of this was put in writing and given to someone whom we trusted so that we would always have that to remind us of all our reasoning in the event that the unthinkable happened. Today I am very thankful and know we made the right decision. But again every situation is different.

Listen to your heart, feel what your gut tells you and go with it. I assume you and your husband can come to a mutual decision. Whatever decision you make, know the pros and cons, know the consequences. Remember if you decide not to trach you can always change your mind and so it later. If you decide to trach, they can be removed if his condition allows it. Neither decision is irreversible.

Please keep us posted on your decision.
Blest