I'm not alone!

[momma3]

For the last couple days I have been looking around this site and reading some of the posts, then going to individual sites that some of you have listed. All I can say is Thank You! Thank You! I feel like this has been a saving grace for me these last few days. Guess I should explain....I am the proud momma of two beautiful babies, Kaison who is 2 1/2, totally healthy and as onry as any 2 year old!, and my beautiful little Kenlie who is 14 months. When Kenlie was born we were told that she had a heart condition (tetrallogy of fallot) and a cleft palate and low set ears, because of these things together they said they expected there to be a genetic condition, they were right, she was diagnosed with Digeorge syndrome. We did our homework, read up on Digeorge and tetrallogy we knew it was going to be hard but we also knew we could handle it, little did we know so many more things were going to be added! Kenlie began having seizures in May 09, she was sent to St Louis Childrens (again) she would desat so low that they decided to intubate her, she was intubated may 8th, Kaisons 2nd birthday, on may 18th they extubated her, that night she went into cardiac arrest, no pulse for 23 minutes, worst 23 minutes of my life! They were finally able to get her heart beating again and reintubated her but she bought herself a trach due to unexplained airway swelling. It was hard and scary but we managed, she had her heart surgery in June, got through with flying colors, in July she began having more breathing issues, she was just working really hard to breath. She was again admitted to Childrens and on July 22nd she was put on a vent, she has been on one since. She does great on it, we've learned all we were supposed to learn. She has been home since Sept 14th. We have somehow (the grace of God) been able to stay away from the hospital except for many many Drs appts. Every time she gets sick I have this voice in my head saying 'this could be it, she might have to be admitted for this' thankfully that voice has been wrong so far! She starts going to vent clinic in March, they are thinking they might be able to start weaning her off the vent! How awesome would that be! I might actually be able to walk around the house holding my baby, answer the phone, the door while holding my baby, instead of having to put her down first because she is attached to tubes! People with "healthy" babies do not realized the small things that they take for granted, I didn't with Kaison. I think that has been my problem for the past couple days, and she is once again sick (increased secretions, cough) so I'm trying to quiet that stupid voice in my head, but I am just so aggrivated that our "normal' life is now gone. I see my family and friends with their babies, walking around with them, not even thinking about it, wishing they wouldnt be so loud in church when I am praying for the day to hear my baby cry again, talking about buying baby food or what new thing their baby has eaten this week, much better than talking about g-buttons and if the DME co sent enough pediasure for the month! I'm just so frustrated right now, maybe hopefully its just a normal emotion in this kind of situation, we have been doing this for months, I know we can do it, thats not the issue! I'm sorry, I don't know anyones name yet, but I read the post about people asking "how do you do it?", I so agree with you, some times I just want to say "you know, some days I don't know how I do it either, but I do, I have to, I have no choice, she is my daughter and I love her and would do anything for her. It's not like any of us signed up for it! When I was looking around and reading I just felt this sence of relief, there are people out there who are going through the same thing we are going through, feeling the same things we are feeling, living this crazy life that we are living! We are not alone! When you are surrounded by people who have healthy children you begin to feel like you are all alone, no one can understand the trials and difficulties but someone who is going through the same thing. Thank you all so much for sharing so that others know they are not alone! I hope to get to know you all and share my feelings and stories with you! Sorry this has been so long, I had to make myself stop, I could go on and on. No one to talk to for so long makes you a little crazy! :) As soon as I figure it all out I will post a picture of my beautiful little girl!

[Niff]

:hug:s Welcome to the board, Aimee.

The parents and caregivers here have been terrific for me in dealing with my own demons and some days I don't know what I'd do without them. The beauty here is that no one judges and we've all been there at some point in time. :)

[Momoffive]

Welcome! I am really new here (although my son has had his trach for almost 12 years) and I now regularly wonder why I didn't join sooner. You'll find help, answers, a place to vent, a place where people understand and don't judge. I haven't figured out photos yet either!

[lynn]

Welcome Aimee!! looking forward to getting to know you and Kenlie... this board has been a godsend for me. A place to ask all the stupid questions I come up with(and am too embarrassed to ask the docs).A place to be able to vent to others who get it and dont judge when I am having one of those depressed days and can rejoice with me over the smallest of new skills Joseph learns. Cant wait to see a picture of your daughter

[Ann]

Welcome Aimee. My son spent many, many months in the PICU at St. Louis Children's Hospital. Even though we now live in Arizona, the doctors at SLCH still care for my son - it's a great place! I look forward to getting to know you and Kenlie.

[alizesmom]

Welcome Aimee, to you and your daughters. I love this group for the love, support and advice they give. Karen

[Shylent]

:hug: Welcome Aimee - this is really one special group of people ! They certainly make this crazy roller coaster ride much more fun - that is for sure !

Looking forward to getting to know you and your family !

[Kate]

Welcome! I'm glad you found the site-you're right it is a fabulous place that will help you through the darkest times...as someone will know how you feel. What struck me is your thoughts of, "this could be it". My son Mitchell is now 5 and I still get that from time to time. For me, I think it comes with having a dx. of a syndrome that doesn't have good odds. (though we've shattered those) I can't tell you that the thought will go away though I have noticed that with time it does get weaker and you aren't apt to jump to that thought everytime an illness hits...just when the big illnesses hit. :rolleyes:
I'm excited to get to know you and see pictures of your sweet daughter. Glad you found the site-it has helped me also realize that I'm not the only one going through this. Feel free to ask anything and everything-someone always seems to know or will point you to where to find the answer. These ladies are great! :hug: welcome:hug:

[twintotwin]

Welcome Aimee :hug:

[JWorthington]

Welcome Aimee! This is a great place for support and advice - there is always someone who has been there, done that, and bought the t-shirt!:) This life become your normal - just, a different kind of normal. And when you have those dark days - remember, baby steps, take it one day at a time. we all have those days and find support from our friends here.:hug:

[momma3]

Thank you all so much for being so welcoming! It's great to have a group of people who understand the craziness of having a child with a trach. Not all bad, there are good things too! Can't wait to have just the trach, a trach without the vent will be awesome! Baby steps right! :)

[TommysMommy]

Welcome!! My son was a heart/trach baby as well. He was O2 dependant and constantly tethered to his concentrator, but not on a vent. Our hardest thing was moving him around and eventually we were confined to our living room and his bedroom (side by side with concentrator between).

On a side note, did you know that Shaun White, Olympic Gold medal snowboarder was a TOF baby? He had two open heart surgeries and wore leg braces as a child. Now look at him go!!

[sarah78]

Welcome Aimee :)

I couldn't have gotten through the last year and half without the people on this board. Just remember you're not alone and everyone on here totally understands what you are going through. Look forward to seeing your pics,

Sarah x

[Baby1107]

Welcome...you are NOT alone!!!

I dream of driving in the car with my son some day, alone, just the two of us! Bliss!!

[Brooklyn]

HI, and welcome...I haven't found any support anywhere that compares. It's nice to be able to ask other parents what they found to work best. I am so so grateful to have this wealth of information and support! Talk soon! www.myspace.com/brooklyn31407

[jamie]

welcome aimee
i love this site no where else do people understand the highs and lows of having a trached / vented child.
it is not a situation i wish on anyone, but now that we have it glad we are here

[destinyandmiracles]

Welcome! I am new here too. My son had his trach done in December. I noticed you said your daughter has sats that are very low. Can I ask what they went to? Do the docs know why? I ask because my son still has undiagnosed cyanotic episodes.

[momma3]

[ I noticed you said your daughter has sats that are very low. Can I ask what they went to? Do the docs know why? I ask because my son still has undiagnosed cyanotic episodes.[/QUOTE]

Kenlies seizures are what caused her sats to drop. Even though she was an unrepaired heart baby at the time, she still had pretty good sats but then in May she started having seizures out of the blue. Thats what led to the trach. When she seized she would desat down to 40's once in the 30's so they intubated her which ultimately led to the trach. They don't know which happens first, the desats causing the seizures or the seizures causing the desats. She doesn't have many seizures now (thank the lord) but when she does she still desats and turns blue, we have to pop her vent off and bag her back up. Other than that her sats are actually pretty good. When she sick they go down and she sometimes needs O2 for a couple days but that is about it.
I hope they find out what is causing the desats for your son. Does he have any heart issues or is it all respiratory?

[Katelyns.mom]

Welcome!! We are new here with a trach as well. My daughter has only had her trach for about 3 weeks. On the vent at night and HME with O2 during the day. My daughter however is 10 y/o. I am so thankful to have found this website!!!

[kadiera]

Welcome! I am new here too. My son had his trach done in December. I noticed you said your daughter has sats that are very low. Can I ask what they went to? Do the docs know why? I ask because my son still has undiagnosed cyanotic episodes.

If you search in the pediatric tracheostomy area of the forum for cyanotic episodes, there's a lot of good information on various things people have found...


Hi Aimee! Welcome to one of the best support groups ever :)

[slpwoman]

I am new to this site. Our daughter who is 14 got a trach and is vent dependent in December. Rina has mitochondrial disease and in the last year her muscles in her lungs have become too weak to work adequately on their own. We went from BIPAP overnight to BIPAP 16 hours a day and even tried BIPAP 24 hours a day for a few months hoping it would give her the "boost" her lungs needed but due to the progression of her disease, we realized she needed more and needed to be on the vent 24/7. (We were doing NIV on BIPAP 24/7)
The BIPAP also was not giving enough and she needed the direct access that the trach would give to her lungs for them to work effeciently. Just wanted to say hello. Stacy

[JWorthington]

Welcome Stacy, I'm sorry your daughter has had to be trached as a teenager, that must be hard. but, it must be much easier for her to breathe:hug: