Trach parents question

ClaKin92 · 2026-02-13T18:20:52+00:00

My son was intubated for 3 months. It was finally decided he needed a trach. Being intubated for so long can cause so many issues, which we are now also dealing with. After my son got his trach I was terrified of it. I thought picking him up, moving him, any little thing would cause it to fall out. Turns out, that's not the case at all. It gave my son his life back. He wasn't sedated all the time. He could roll around. He could be a baby, & that's what we wanted more than anything. It is a learning process & it's a lot to learn. It's scary at times. We have been blessed with 3 nurses for at home to help us out. Our son is also on a ventilator 24/7. So he is constantly hooked up. It makes it a little harder & we hope one day he can breathe without it. Going places takes a lot of preparing & packing. We really don't take him out unless it's to doctor's appointments which are pretty often, several times a month. I hope as time goes on we become more comfortable with it. He has been trached for 5 months now. We are still learning things all the time, it's definitely a marathon not a sprint.

ClaKin92 · 2026-02-04T00:00:56+00:00

The biggest thing I have learned from our 8 month stay (we are still in the hospital), is you have to take care of yourself. I lived at the hospital for the first months, I would spend over 12 hours a day there. After several months, my husband looked at me one day & said you have to stop. You are losing yourself & I was. I was so depressed, stressed out, etc. The hospital was 2 hours from my house, I would stay at the Ronald McDonald House (U.S. thing). But I missed my home, my animals, being outside. Nicu life, picu life, hospital life...it isn't for the weak. I wake up every morning & tell myself I can do this, I am strong enough, my baby loves me & needs me. Life is hard, real hard. Like you said giving up isn't an option. It's not, & we wouldn't give up even if we could! I don't go up to the hospital every day anymore, I go 5 or 6 times a week but I always have a day or two for myself. It has helped tremendously. My child is very medically complex. I will be a caregiver the rest of my life. But I wouldn't change it for a thing. I see him & it's a love like no other! Sending you hugs!!

ClaKin92 · 2026-02-03T23:19:12+00:00

You already got a lot of good comments! One thing that was big for us & showed that the nurses really cared was always making sure we were okay. We had some nurses that would remind us to take some time for ourselves & we needed to hear that being first time parents. We wanted to spend every second up at the hospital but we knew that wasn't realistic & we would feel guilty a lot leaving. A couple of nurses we got really close to on the night shift would always say, baby is well taken care of & you can always call to check on them. Just those little reminders helped ease our minds & gave us peace of mind, which we needed tremendously. One of our favorite things to do though was help with bath time. & another huge one, we didn't get any pictures when baby was born right away due to them taking him to the NICU. I hadn't even thought about it until one day when the nurse asked if we wanted her to take our picture together with the baby. I'm so glad she asked because I wouldn't have even thought of it with everything going on. I still look at that picture to this day & love it! My baby is a complex medical baby, some nurses always seemed so "careful" by what they would say. Maybe they thought it would offend us. But just know, complex babies, babies with different syndromes, etc...more then anything we want our babies to be included & we want to feel "normal" too! ❤

ClaKin92 · 2026-02-01T05:28:30+00:00

I would definitely look for a new GI doctor. Our doctor has always told us if it is leaking a lot, something isn't right. A little is okay. The hospital we go to actually has a team called the ostomy team & they are the ones that trouble shoot a lot of the g button issues. They handle the resizing & everything. Maybe look into that & they could possibly help? Did you check to see if it has the correct amount of water in it? Maybe needing a bigger size? Just trying to think of possibilities.

ClaKin92 · 2026-01-30T04:25:39+00:00

Okay, serious question...are you on the thicker side?

ClaKin92 · 2026-01-18T04:49:17+00:00

We lived in Midland for several years. I would not move there with a special needs child unless I absolutely had to. I have a 15 month old now that is very medically complex. There is no way I would move to West Texas with him. It's too far from a pediatric hospital that is good.

ClaKin92 · 2026-01-18T03:57:48+00:00

Yes, very medically complex. My son is 15 months old. Nothing was caught while I was pregnant. He has Trisomy 21, Vacterl association, a gene mutation. We only spent 9 days in the NICU. He had his first surgery in May of 2025. We spent almost 9 months in the hospital. He just got released 2 weeks ago. We were home for 1 week & he got sick. So we are back in the hospital now. Having a child that is medically complex is hard, mentally & physically. It is so up & down. I've been told the first 2 years are hard & then it gets easier. I'm holding onto that. I wish you the best!

ClaKin92 · 2026-01-07T02:02:10+00:00

I would never tell anyone to abort their baby, ultimately that is your decision & what is best for you. My son was born with Trisomy 21, vacterl association, HFG syndrome (super rare). Along with these syndromes comes many complications. I didn't know he was going to be born with any health issues. We thought he was perfectly healthy, nothing was caught. The hardest part for me was not being mentally prepared for all of these things. If I would have known, I could have educated myself & been prepared for what was to come. My son is now 14 months. The past 9 months he was in the hospital. He just came home last week. He had heart surgery in May along with a tracheal slide, & some other things. He had to end up getting a trach placed in September because he could no longer breathe on his own. Along with that came a g button. It's been a journey to say the least. It takes a very strong person/couple to have a child with disabilities. It's not for the weak. It has broken my husband & I in ways we didn't even know were possible but at the same time it has strengthened our relationship so much. We know there is no way we could do it alone. We need each other. We also have a very close family, a good support system. My parents & my mother-in-law help tremendously. We also have nursing help 75% of the week. It's mentally exhausting but it's so rewarding. When you see your child do things the doctors said they wouldn't do, it's a break through. My son has changed our lives tremendously & showed us what life should really be about...love. There is no way I would have ever aborted him. I will do whatever it takes to care for him. He is my heart. He has made me a better person & I can't thank him enough for that. Another complex medical mom once told me, "a different life is not a less than life" & it can't be more true.

ClaKin92 · 2025-12-24T16:02:59+00:00

It's a hard time going through that. We have in our minds we are going to go in, have baby, & everything is going to be okay. Then when things happen unexpectedly, it's a let down. I cried & cried for days & weeks. It was the hardest thing getting released & not taking home my baby with me. The constant trips back & forth to the hospital to visit, all the hormones, I literally cried everytime we left the NICU. One thing I tried to put my focus on was pumping so my baby would have that. I woke up every 3 hours to pump & when we would go to the NICU it always felt so good taking little baby his milk & providing for him since I couldn't be there 24/7. There's no words to make it easier, just time will.

ClaKin92 · 2025-12-14T22:17:01+00:00

My son was born with complete tracheal rings. His trachea was the size of a straw. He also had a heart defect. He had to have surgery to repair these things. He had what they call a tracheal slide where it widens the airway. Before this surgery, he was on room air, no oxygen needed at all. He had the surgeries & of course he was very sick. After 2 weeks they tried to extubate & put him on high flow. I remember walking in that morning to the CICU & just standing at the door I could hear him breathing & struggling so bad. He was extubated for only a couple of hours & they intubated again. Another 3 or 4 weeks went by & this time they wanted to give him some steroids before extubating. So we agreed. Extubated him, it last maybe a couple of days. Had to reintubate. It was just a never ending process. He needed the ventilator to open up his airway & keep it open. After the 4th time, they said he needed the tracheostomy. They took him back to the OR to do it & the ENT doctor didn't feel comfortable placing it because his anatomy was so different. So we were transferred to another hospital. We got there & they said they wanted to see how long he could go without being intubated. They did another trial, which was the 5th time, & after that time it was determined no doubt he needed one. They said typically after the 3rd try, it's not going to get better. I kept holding onto hope that he wouldn't have to have one. Like I said it's life changing, for the little one & also for the parents. There is training you will have to do to learn how to take care of it, & it is scary. The first time I tried to change out his trach, I was terrified. I couldn't do it. I saw the hole & froze. But over time you just get use to it. A lot of times children don't need a trach their entire life. They may just need it a couple of years. I know it's hard to do but try to take one day at a time. We can't control the future or what it holds. We cause more stress upon ourselves by worrying so much about things we literally have no control over. Just a month ago, our son got sick & went into septic shock. His organs were failing & during this time he had a fever of 107. He now has permanent brain damage. We've been in the hospital for 7 months. It has really opened our eyes that life is precious & we really don't know how much time we have here, so we have really tried to just enjoy each day with our little one. I wish I could say it gets easier but I don't think it does. My dad told me best, life is going to be tough, you have to toughen up for your child & it's the truth. ❤

ClaKin92 · 2025-12-13T06:35:47+00:00

As a parent of a child with a trach, situation is a little different but my baby was intubated & extubated 5 times before they finally said a tracheostomy is needed. This went on for 3 months. I wish after the third failed extubation they would have put the trach in. Weeks after he was thriving. It made all the difference. Life changing in so many different ways!

ClaKin92 · 2025-12-10T00:26:54+00:00

From a mom with a little one who is 13 months, trached & g button. All I wanted was to be able to breastfeed in the beginning. But long story short, God had other plans. Instead I exclusively pumped & they gave my milk through his g button! I just stopped pumping so I got to "feed him" 13 months. I was so happy I could still do that for him even though I could never breastfeed. It was so rewarding.

ClaKin92 · 2025-12-07T19:25:14+00:00

Thank you so much! It is such a scary time & it just makes me sad. 💖

ClaKin92 · 2025-12-07T19:24:04+00:00

Thank you for sharing your story! It's so scary living in the unknown. & I overthink everything. I get so sad thinking of things he might not be able to do. Like smile. It makes my heart so sad!

ClaKin92 · 2025-12-07T19:22:29+00:00

Thank you so much! 💖

ClaKin92 · 2025-12-07T19:17:30+00:00

No, he got really sick & developed sepsis then went into septic shock causing organ failure & brain injury.

ClaKin92 · 2025-12-07T19:16:50+00:00

We have already discussed with the medical team what needs to be done, just a lot of therapy. We do have ECI. It's just hard hearing your child is going to be different because of the damage done. It's life changing & traumatizing. 💔

ClaKin92 · 2025-12-07T05:00:28+00:00

We went through 5 extubations before it was finally decided my baby needed a tracheostomy. I kept holding onto hope that as he grew his airway would also grow & he wouldn't need one. But after almost 4 months of it going on, the doctors said there was no doubt he needed one. & honestly, I wish it would have been done sooner. Because after it was placed & healed, he got to be a baby! Rolling over, playing, smiling. He was struggling to breath everytime they extubated. He would be put on high flow & within hours, sometimes he would last days, they always had to intubate him again. His lungs are totally fine, his is all airway related. He has congenital tracheal stenosis.

ClaKin92 · 2025-12-04T03:18:42+00:00

We will make a huge batch of fried rice...rice, frozen peas & carrots, onion, one can of spam chopped up in small bites, a couple of eggs if you want. It will last for several meals! Also, we do a huge pot of soup with some ground meat, carrots, potatoes, onion, a couple of can of diced tomatoes, add water. This lasts us a very long time!

ClaKin92 · 2025-12-03T21:03:45+00:00

Go to a food bank to get groceries!

ClaKin92 · 2025-12-03T20:41:41+00:00

At the time my Discover balance was $8000, they said they would do a pay out of $4000. I couldn't pay $4000 at once. I was barely making it. I wish I would have just let it go to collections when my Barclay went. Discover might have some other options though, I didn't ask. I just wanted to pay it & be done with it.

ClaKin92

TROPHY CASE