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Old 09-25-2008, 09:15 AM
CathyC CathyC is offline
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Default Hi I'm new and have questions!

Hi everyone,

My name is Cathy and my 10 week old twins girls had trachs put in two weeks ago today due to swelling caused by their breathing tubes. My girls were born prematurely at 28 weeks, 4 days. The doctors who performed the surgery (a different hospital than where they are in the NICU) expect the trachs to stay in six months to a year. Since the surgery, they are continuing to have "breathing spells," usually caused by secretions. But the number of spells they have had since the surgery has been around two or three per day, compared to 8 or more before. Also, one twin passed the barium swallow test last week and one failed. The one who failed is taking it again next week.

The hospital said they will not discharge babies who have spells and ng tubes. This hospital doesn't get trached babies that often and are making them accomplish the same milestones as other babies before being sent home (no spells for five days in a row and full bottle feedings without aspirating). They are suggesting moving them to a long term care facility. I'm freaking out about this. I was hoping to have them home with me next month. Has anyone had to do this? Should I be worried? Also, has anyone had experience with heavy secretions after this surgery? Is there a chance they will subside once their bodies get used to yet another foreign object in their bodies?

Thanks in advance!
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Old 09-25-2008, 09:42 AM
LaurenS11 LaurenS11 is offline
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Hello and welcome to the forum Cathy...I just wanted to say hello and I know you will find answers to all of your questions here!
Searching for quality incontinence products for my five year old son.
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Old 09-25-2008, 09:46 AM
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haltec haltec is offline
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HI Cathy and welcome to the group. This is a fantastic place to get support and answers. There's usually someone on here who's 'been there done that.' What are your girls' names?
Can you explain what you mean by 'breathing spells'?

We came home with the trach and NG tube. But we had nursing. Have they talked to you about home nursing? Are you working with a social worker? I don't see any reason why you couldn't bring your girls home, but you may want/need the help of a nurse. I don't know what we would have done without them.

Sienna did have a TON of secretions after the trach was placed. They did get better, but it took some time.

Good luck with the second swallow test. I hope she passes.

How is the one eating who passed? Does she have any issues? It took Sienna a long time to want to eat by mouth even though she was safe to do so.

Keep us posted.
Claudia - Mom to Sienna (4-22-07) and Sammy (12-14-2008).
Sienna was trached 9-27-07 for vocal cord paralysis. Right cord now moving.
Decannulated on 7-16-2008!
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Old 09-25-2008, 11:06 AM
CathyC CathyC is offline
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Location: Massachusetts
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Hi there,
Thanks for the welcome! My girls’ names are Courtney and Chloe and they are identical twins. We have a family meeting scheduled for Friday, so I will definitely ask about home nursing and what programs, if any, we may qualify for.

By breathing spells I mean bradycardia, where the baby’s heart rate and oxygen rate drops (usually caused by apnea or secretions). Sometimes the girls need to be bagged to get them to breathe normally again, and sometimes they pull themselves out of it. My girls are breathing 100% room air, they are not given oxygen on a ventilator.

Chloe is doing okay (I think) in her feedings. She just started last weekend (just one try per day) and on her first try drank 23 cc’s, which is a little more than half her bottle. She had breathing spells during the next two or three tries but has done well the last few days. Initially they were talking about having her take the barium swallow test again (because of the spells), but I think they’ve changed their mind on that.

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Old 09-25-2008, 11:25 AM
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TommysMommy TommysMommy is offline
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Instead of a long term facility, is there a nearby Children's hospital that they can be transfered to? Not for the long term, but because I think it would make getting them home easier. You would have training with people more experienced in your babies needs.

My son, Tommy, came home with a gtube, trach, and apnea monitor. I understand the need to want them bottle fed and not having breathing spells before they will send them home, but that can't always happen. Tommy failed his swallow study because he physically could not swallow.

I hope the family meeting goes well and you can get some answers. Definetly ask for nursing. I don't know your financial situation, but according to SSI guidelines, low birth weight is a qualifier for a child to get benefits every month including medicaid. It may help you get nursing and other help.
Rene, Mom to my Angel, Tommy. Born 9/25/06 at 33 weeks, with Single Ventricle Heart Defects and Cricopharyngeal Achalasia (Gtube dependant, poor swallow). Trached at 2 months for Severe Subglottic Stenosis. My little flirt died unexpectly 8/20/08 from complications from undiagnosed bronchopneumonia.

Forever, Tommy's Mommy
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Old 09-25-2008, 11:42 AM
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faywrayy faywrayy is offline
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Hi Cathy and welcome!

I have to echo what Rene said, look into having them transfered to a children''s hospital. Sounds like the hospital they are currently in will have stricter guidelines for discharge, and like Rene said, it isn't always easy or possible to do that.

My daughter was initially in a similar situation she was eating ok, but not taking full feeds because of her jaw and palate issues. She was working at it, but it could have taken a very long time and the hospital told us they would not (under ANY circumstances) discharge her until she was eating full feeds all the time. Once her airway became an issue, we had her transfered to the Children's Hospital of Philadelphia (CHOP), where her trach was ultimately placed at 7 weeks old. CHOP had absolutely no issues at all with sending her home with an n/g tube and they provided all the training we needed to care for the trach, helped deal with our insurance company, gave me contacts to Early Intervention, and helped us set up private duty nursing. We came home 4 weeks later with a trach and an n/g tube.

A meeting sounds like a step in the right direction. Let us know what happens!
Angela - mom to Zach 14, Jake 12, Nick 9, & Kate 9/28/06 Pierre Robin Sequence, Stickler Syndrome, decannulated July 4, 2008 -- Kate's blog

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Old 09-25-2008, 01:28 PM
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alizesmom alizesmom is offline
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Cathy, welcome to you and your girls. You've already gotten good advice. Go to the family meeting with a plan to request discharge with nursing or transfer to another facility if needed. If going home able to eat totally on their own was a criteria for my kids they would both still be in the hospital and they are 5 and 3. Karen
Karen, married to Charlie. Mom to Gilbete', Jeanette , Andrea, Ben, Ciara, Brian and Brady. Also mom to Alize who is with God. Grandmother to Marek, Paige, Vincent, Leilani and Cayden, Emma and Samuel.

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Old 09-26-2008, 09:43 PM
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mayasmom28 mayasmom28 is offline
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Hi Cathy, I am also in Mass if you need any help/advice trying to get nursing for your girls. There is so much I didn't know back when my daughter first got her trach that I have figured out along the way. Both by myself and with the help of other moms in my situation. My daughter is covered by my husbands primary insurance but she also has Masshealth that covers anything our private insurance doesn't pay. She gets 48hours/week of nursing and is only on the vent at night. If your girls qualify for MassHealth I would think they would qualify for some amount of nursing. I also take care of a little boy (i am a nurse for a home agency) who does not have a trach and his insurance allows him 45hrs/week. He has lung issues.

Hope your family meeting went well.

Mom of Makayla 9, Julia 5 and Amaya 3 years who has spina bifida, hydro/vp shunt, chiari II malformation and decompressed 3Xs, VCP, central sleep apnea, trached and g-tube at 1year, sleeps with vent/cpap. Is cruisin around in her pink chair and loving the FREEDOM!!
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Old 09-28-2008, 09:23 PM
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drct1245 drct1245 is offline
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Welcome to the board Cathy... Everyone has great ideas. I think giving the girls some time to get used to the trach is a good idea. I don't know what the soonest any of our kids on the board were allowed to go home after the trach was placed... ?? I know we aren't.

As for eating... (I am getting ahead of your questions...but wanted to give you a heads up) What we learned, that no one told us, is where ever you end up, make sure that there is a speech or feeding therapist working w/ you every step of the way. We didn't push it and when you miss your child's "window" to eat solids, it is 10x harder to get them to learn the techniques of eating solids. Ayden drank his bottle great, but we didn't push for feeding therapy.

I hope you can get your girls' home soon... they thrive in the home environment. I know Ayden took off after coming home.

former 26 weeker -- 4/2006 -- trach, g-tube, nissen; came home 1/07 vented 24/7; Successfully decanned 8/8/2008 -
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