My first visit here

[lukesmama]

Hi everybody!

I have been doing some searching for a support group and haven't been able to find any. My son was born on Halloween 2007 and he was 7 weeks early. They did an emergency c-section on me because he didn't look good on the fetal monitor. After barely surviving birth, he was intubated and the doctors could not figure out what went wrong with my pregnancy.

After several weeks, the hospital he was born at, GBMC, decided to transfer him to Johns Hopkins Hospital in hopes of a diagnosis. While he was there they made several extubation attempts to no avail. He still needed the additional ventilation/oxygen support. The decision was finally made to put the trach in along with the G Tube. Everything was going ok until he got RSV and we almost lost him. We were lucky that he was at JHH because they had a machine that's a "last resort" called ECMO. He was on ECMO for 4 weeks in March.

After he came off ECMO, they continued to try and get him stronger so he could go to the rehabilation facilty, Mount Washington Pediatric Hospital. He has been there since April. Twice he has been sent back to JHH due to infections but he is back there as of now and seeming stronger every day. He is still on the vent but they have him down almost to room air.

We still don't know when he will be coming home but I have been in training as well as my husband, mom and mother-in-law. I have done 2 trach changes and 2 string changes along with suctioning. It's been hard for me to overcome my fear of interacting with the trach but I am slowly getting more comfortable with it. He's such a good, sweet boy and doesn't seem to mind the cares so it puts me to ease.

In addition to my son, I have a 5 year old daughter who is about to enter kindergarten. I am worried about how I am going to manage sending her to school and caring for my son. I don't know how it's going to work out but I know it will. Just nervous a bit.

Anyways, I hope to meet other moms in the same boat. My friends try to understand what it's like to go through this but they just can't.

[faywrayy]

Hi and welcome! Jump in on the posting, you'll find lots of support and information here.

Did they ever give you a diagnosis for your son?

[My little figther]

Welcome - You will find a lot of support here. You can ask any questions one of us probably will have an answer but if nothing else we will be here to listen, vent, cry and even laugh. You could not find a better place for support. I am in Virginia by the way - You must be around Baltimore?

Michelle

[Peyton's Parents]

Although my daughter doesn't have a vent, we took her home at six weeks with a trach and a g tube. Everyone on this board has probably felt the same emotions you are feeling now. No one really can understand unless they have had the same type of experience - so don't be afraid to use this board to ask questions, vent when you are stressed and celebrate the wonderful moments. Good luck!

[KJKK8437]

Hey there! Welcome to the club. Sorry you had to join. Michelle said (above) that she is local in Virginia. Well, Michelle and I are neighbors, so we're local too. We're all close enough to get together on weekends if you ever want to, or to share doctor information.

We've never been to JHH, but Michelle's grandson has been seen at DC Children's, and my son has been there. We're seen at Inova Fairfax on the VA side of DC, and I have friends that are seen at Georgetown. We can chat about all of that if you ever feel the need. (I'm not trying to say you should switch docs or anything like that -- I just wanted to let you know that there are folks you can reach out to if you want more information on local docs and hospitals.)

Welcome.

[JWorthington]

Hi and welcome. I think we can all relate to the feelings you are experiencing right now. Hang in there, things will get better. we are here to support you so if you have any questions, ask away :) It's true, friends try to be well-meaning, but they just don't 'get it' We've all been there, worn the t-shirt, etc., so we know exactly what you are going through. Just allow your friends to help in any way they feel able, maybe with cooking, shopping or housework, I'm sure they feel at a loss what to do too.

Julie x

[alizesmom]

Welcome to the group. Don't worry about feeling uncomfortable with the trach, we all do initially. Later on it becomes second nature. Have they given you any inkling on when you'll get to take the little guy home? Soon I hope. I can't really help with the sibling question. My "baby" was 20 when Alize joined us. Karen

[haltec]

Hi and welcome. As everyone else has said, it is overwhelming, but it will get easier as you get more comfortable. Sienna is my first, so I'm not any help with how to handle an older sibling. Will you have nursing to help with your son? Nursing was a life saver for us. Again, welcome to the best group you'd never want to join. :) Everyone here is absolutely wonderful.

[lukesmama]

I am so glad that I have the ability to talk to other moms in the same boat.

Yes I am in the Baltimore area. I live in Bel Air, MD which is a little north of Baltimore near I-95. It was a bit of a drive to go to JHH everyday and he's still far away from me at Mount Washington Pediatric. That facility is in Baltimore City so it's about an hour to get there from my home.

I love the idea of getting together on weekends. I have checked so many places for a support group but haven't had luck. I think it would be so helpful to see other moms and their kids and learn from them.

Here's some pictures of my little man and my daughter...
http://www.carepages.com/usr/G71216/P1625874_FS.jpghttp://www.carepages.com/usr/G71216/P1448067_FS.jpghttp://www.carepages.com/usr/G71216/P1383523_FS.jpghttp://www.carepages.com/usr/G71216/P1404837_FS.jpg

[drct1245]

Hi and welcome - your lil Luke is a cutie!!! Just wanted to let you know that Ayden was 9 months old when he made it home from the hospital and was on a vent 24/7. It's tough, but it can be done, however, he is our only child. He is now 2 YO and we are going to try to decan him in less than 2 weeks!!
:hug:

[KJKK8437]

I am so glad that I have the ability to talk to other moms in the same boat.

Yes I am in the Baltimore area. I live in Bel Air, MD which is a little north of Baltimore near I-95. It was a bit of a drive to go to JHH everyday and he's still far away from me at Mount Washington Pediatric. That facility is in Baltimore City so it's about an hour to get there from my home.

I love the idea of getting together on weekends. I have checked so many places for a support group but haven't had luck. I think it would be so helpful to see other moms and their kids and learn from them.



Bel Air -- hey, cool. That's on the way to my Mom's house. I always wondered what was up there. Let us know when your little man comes home, and we'll plan a visit. If you want to get together beforehand, let me know, too, and we can arrange it. I imagine that you'll want to spend all your weekends at JHH, though, and I don't want to interfere with that. Just let us know -- no pressure -- your call either way.

[Hope]

Welcome! Luke is so cute!
Hope

[Karen Lucas]

Hi! My name is Karen and I sent you a private message!

[Boys3]

Good luck to you. I totally get the panic and uncertainty. I too have older children to tend to. It is amazing how they rise to the occasion. You will be ok even though it doesnt always feel that way!
kate

[My little figther]

Your little guy is so cute. Karen, you and I should meet one of these days
Michelle

[lukesmama]

Yes I would LOVE that. I think it would be great for me to meet other kids with trachs and also for my 5 year old daughter to see another kid with the trach.

[lil' G's mom]

Hi, haven't been on in awhile, so I need to update. My son just came home 6 weeks ago on a vent 24/7, and I have a 7 yr old too.... It's been hard but also wonderful, we don't receive any nursing, but it's ok. This is a great place for information and support. so hang in there...

[PetNL]

Hi, what a gorgeous son you have. Being apart from them is indeed very tough especially when you have other kids to love and support through this also. It may seem like an impossible task at the moment but you will get there. With regards to the school run make use of any helping hand you can although I know its hard when they want Mummy to bring them. Kristof has been launched into the push chair at 8am in his pj's with a neb on and his night-orthopaedic boots and all the paraphanelia that I need. It seemed mad in the beginning but it is our new norm. Exciting time for your little girl starting kindergarten but equally challenging when you have Luke home. Great that you have family training up in the trachi care and hope Luke continues to gain strength.