New/introduction

[Barb]

Hi, everyone. Seems like a lot of new faces are coming out today! I have actually been lurking here for a while and I have learned soooooo much from this site!

I have a little boy, Bobby, (my 4th baby) who, as of 3.5 wks ago, has a trach. He was a 32 week preemie and he has Beckwith Weidemann syndrome ("BWS"). One of the main symptoms of BWS is an enlarged tongue -- usually it doesn't block the airway, but sometimes it does . . .

To make a long story short, we made it through 8 wks of NICU and went home with only a g-tube. While in the NICU, he had 3 surgeries: an omphalocele repair; a Nissen/g-tube placement and some other abdominal stuff; and a heart valvuloplasty. We thought we were home free, but 2 wks later, at a routine cardio visit, the dr. was so disturbed by Bobby's breathing that he ordered us straight to the ENT or the PICU. Honestly, I was glad someone was finally listening to me b/c I knew that there was a major obstruction in his airway . . . . I went to the ENT, hoping to be told that it was "only" RSV, but he sent me straight to the PICU. We held out hope for a couple of days that it was just a respiratory infection, but no luck -- his tongue had grown significantly and it kept falling back and blocking the airway. Reluctantly, but knowing it was the best choice, we agreed to the trach.

Nothing went smoothly with the operation or the recovery -- he had major unexplained seizures after the anestethia and he kept hitting the vent and knocking the new trach out and they had to replace it 3 times in the first day. So, they put him on paralytics for a week and doped him up so much he couldn't even blink. That was miserable, but on Christmas day, they started letting him wake up a little. But, oops, they forgot to give him methadone to wean him from the morphine, so he had serious shakes for a day and I was convinced they had really damaged him.

Anyway, we finally got home with him and we are learning to live with the trach. It's not so bad, actually. It is much better than watching him stop breathing several times a day!!

We did have night nursing for a few nights, but it was very chaotic and, with 3 other little kids in the house, I just wasn't totally comfortable with a stranger in the house all night . . .
Am I crazy for telling them I don't want a night nurse?? Last night, he just slept in our room (snuggled next to me like my other babies, but with a mist collar, pulse ox, and feeding tube attached!!) He has been in the hospital so much, I just want to let him be a baby and not a medical experiment, you know??

Anyway, just wanted to say hi -- I actually have a million questions for you experienced trach moms, but I'll hit you with those tomorrow!

-Barb

[annerae63]

Hi Barb and welcome-
You've come to the right place! This board was a lifesaver for me when Evan first got his trach-although our life is much different now, I still lurk and post when I can. You know, we never had night nursing and he was in his own room the week after he came home and we managed just fine. Yes it was stressful at times and we got no sleep but what else is new when you have a new baby, right? One thing you may want to think about investing in is a video baby monitor-we could see him as well as hear him and it was wonderful. Good luck!!

[Jacks Mum]

Hi Barb,

Welcome to the board, glad you have stopped lurking http://www.tracheostomy.com/iB_html/non-cgi/emoticons/blush.gif
My name is Jess, Im from Australia, I have 2 Children, Jasmine 5 & Jack 16 Months old, he has XMTM, a rare form of Muscular Dystrophy.
He was trached at 9 Months as he could not get rid of CPAP.
He has a G-Tube and now is on a Ventilator 16+ hours p/d.
Jack spent 15.75 months in hospital is has been home for almost 3 weeks, we have no nursing, only respite at the PICU when we want it.
I know of a little boy who has BWS, he also has a trach.
You have had some scary times, I hope that is hte end of it for you.
I bet you had a horrible first day, with the new tube being knocked out 3 times, the seizures, I bet it was traumatic, I was so traumatized after we trach Jack, I thought I had done the worst thing in the world to him.

If you can cope without a nurse, you are not crazy, plenty of people do it without nursing, however having 3 other children, I can imagine it being hard at times, I have a 5 year old daughter, who is on summer holidays, getting her back to school will test us, lucky for us the school is only 2 minutes walk away.
I know what you mean about having your baby as your baby, not an experiment. I have tried to keep it that way with Jack from an early start, It best to do it that way.
I also bring Jack into our bed some mornings, Vent, Suction unit, oximeter all! Takes 5 minutes of my time, not much really!

Sounds like you are adjusting really well with having Bobby home. I bet you are enjoying the time you missed when he was in hopsital.

I look forward to hearing more about you and Bobby on the boards.

Take care
Jessica http://www.tracheostomy.com/iB_html/non-cgi/emoticons/inlove.gif

[Judy]

Hi Barb: I am with you......I do not have nursing at all for any of our little ones, even the one with the trach. With all the machines she is hooked up to with alarms, we hear her if something goes wrong. I do not feel comfortable with anyone taking care of my children but my husband and myself. We do have an elderly babysitter who has learned to suction our adopted daughter (we have adopted 3 severely medically fragile children and foster 2 others) and take care of everything except changing out the trach and the G or J Tubes. We do not allow anyone to do this but us. When we are away from Kenya (1 with the Trach) our cell phones are on and we make sure we can get to her within a few minutes to replace a trach. Once her Trach came out and the babysitter called us as we were almost home as it turns out, and she had already figured out that she should keep the 02 going in at the Trach site and she did it. When we ran into the house, our daughters sats were at 98. When I slipped the Trach back in she looked up at me as if to say, "I was fine without that thing". Ha! We do not leave her if we are going to be more than a few minutes away from her. We, therefore, try to schedule all appts. for the others when she is in school where the Nurse can handle any emergency. We have the greatest school and Nurse in the world. We feel so
fortunate and lucky to have the support we have at their schools, hospital and all our doctors, therapists and professionals.

[Colin's mom]

Hi Barb!

Welcome to the board! Glad you joined. This board has done so much for our family. It has helped me have a sense of empowerment to do "normal" things that I didn't before because my baby has a trach. I have also met wonderful people that I can relate to and they actually "get" what my life is like.

Colin slept in our room till he was 8 months old. He spent alot of it in our bed. Cords, suction machine and all. Now, I bring him to our bed in the morning for cuddling till he is ready get up and start the day. This morning it wasn't untill 8:45! Mom and Dad were sooo appreciative! http://www.tracheostomy.com/iB_html/non-cgi/emoticons/tongue.gif

Lesley

[arielsmom]

Welcome Barb! You guys have been through quite an ordeal, I hope things start to "normalize" now and you can start to enjoy your little baby! I love this board it has been a real life-saver for me. I hope you visit often.

When Ariel had her heart surgery they didn't wean her sufficiently off the fentanyl and I was thinking, "Oh my god, what did they do to my baby" her eyes were rolling around in her head. She had to be put on methadone for almost a month. That was bad....

Hope it all gets better from here!

Karen

[Jacob's Mom]

Barb, Welcome to the board. This a wonderful place for support. Ask all the questions you want!! I know that someone will have an answer for you.

My son, Jacob, has x-linked myotubular myopathy (same as Jack-above) and as a result cannot swallow. He will be 2 on Feb. 3. He is doing extremely well.

I am with you on the night nursing. If you can handle it, I say don't have it. We have never had a nurse - day or night - and we do just fine. However, we don't have 3 other children to tend to either.

[christyw]

Hello Barb! http://www.tracheostomy.com/iB_html/non-cgi/emoticons/smile.gif

I totally understand what you mean when you say you just want him to be your baby, not a medical experiment. I can say that I totally relate to your not wanting nursing at night. I didn't enjoy having nursing, and nights was the first shift that I cut. I kept days (M-F, 6a-2p) for quite awhile, but Gaithy would sleep til noon...and so would I, or later (I am a night owl!) and so by the time I got up, the nurse was soon to go home, and Gaithy and I had plenty of time together then. I loved having my privacy at night - just our family. I didn't get as much sleep at times as I would've if I had night nursing...but I wanted to be in full control, and enjoyed being her main caregiver. We kept Gaithy in our room, but in a crib. And at about 2.5 years of age, gave her her own room. She is almost 3.5 now.

I hope you will continue to find this place supportive. I love this board and anytime something goes awry, or I need any answers or opinons, I post them here.

Christy

[Barb]

Thank you all for the warm welcome! You guys have all been through this and more, and I really respect you!

Unfortunately, Bobby has gone back to the hospital b/c of some respiratory problems . . . his sats keep dropping and he is breathing really hard and very fast. I'm not leaving this time until they figure it out!!! I hate that place, but I'm going to have to be very nice and patient, but persistent, so that he can be okay at home.
My WONDERFUL husband is up there tonight and we have decided that, unless something else is added to his care, we aren't going to have night nursing -- we'll just trade off nights doing the suctioning, etc. Of course, I'll still wake up and check on him, but I'd be doing that with any baby!

Again, thank you for all of your support and knowledge.
-Barb