New here--vent dependent baby

[welovelucy]

Hi everyone, I'm new to posting, although I've lurked for the past several months since my 7 month old daughter Lucy got her trach (she was trached 10/06, but intubated most of the time before that). Â*Lucy has severe tracheobronchomalacia, caused by her congenital heart defect (Tetralogy of Fallot with Absent Pulmonary Valve) which caused her pulmonary artery to become huge and smush her lower trachea and bronchus. Â*She is only trached because she is vent dependent (i.e., she needs the positive pressure that the vent provides to stent her airway open to prevent it from collapsing). Â*However, Lucy's airway issue is a problem she will outgrow, and hopefully we can get her off the vent and then decan in time. Â*But as we all know, none of the docs will commit to predicting when this might be. Â*Could be a year, could be a couple years or more, who knows...

Anyway, I'm writing because I just needed some support. Â*I'm sure I'll be writing more in the near future, but for now, here's my long story short. Â*Lucy has been in the PICU since she was born last July (7 months and still going). Â*We hope to have her home within a month or so, but she has had SOOO many medical issues (mainly due to infections from central lines, but also cardiac issues due to her 2 open heart surgeries and artery ballooning procedure, GJ tube issues, and obviously pulmonary/trach/vent issues). Â*

It's so hard to imagine bringing her home, and to think of all the things that entails, but I desperately want to bring her home anyway. Â*As you might imagine, there are so many questions and concerns with bringing a vent baby home, especially one who has so many other medical problems. Â*DH and I have been doing most of Lucy's cares in the hospital for a couple of months now, and now are in the process of doing the 24-hour independent cares at the hospital. Â*But I'm stressed out and nervous as heck to actually bring her home, with a toddler and jobs to boot.

And then there's the home nursing. Â*Our agency has been trying (in my opinion half-heartedly) to get us nurses for over 2 months now, but we still don't have near enough coverage. Â*How many people out there have 24/7 coverage (or at least night coverage) for vent babies? Â*Some days I feel like I don't want any nurses (which I know is unrealistic) but most days I feel like I'll never be able to do it, especially in the evenings when we're home with our other little one (almost 3) and during the overnights when we'll be trying to sleep...

Also, how do you ever figure out how to transport them and lug all the gear?? Â*After months of angst about the stroller situation, I finally settled on a heavy duty regular stroller, but I'm still not sure how this will all work out, seeing as we still haven't done our little field trips yet. Â*At least Miss Lucy is off oxygen now and on room air! Â*So that's one less piece of equipment. Â*

Anyway, hope to meet everyone online soon!

--Sarah

[Mom2TwinsPlus1]

HI and Welcome Sarah! I am the mom of a vent dependent 2 year old daughter, she is a twin and I also have 5 year old son. Things are pretty crazy when you first come home but it is so nice to have your baby with you at home. Have you thought of a double stroller? That is what most people do I think, we have a special wheelchair type stroller for Emma becasuse she has muscle tone issues and has to be positioned diffrently than a reg. stroller can provide. Anyway with a double stroller you put your baby in one half and the vent and other supplies in the other part/and the basket on it. Maybe that will work for you. Its so nice to meet you, feel free to PM me if you ever want to talk or need advice

[tprocha]

Hi Sarah, we have a vent dependent daughter as well, she is 10 months old and just left the NICU January 23rd. She has no airway issues but rather is vent dependent because of severe lung hypoplasia due to congenital diaphragmatic hernia. She receives a continuous drip feed through a g-j and is very delayed physically. Her g-j was our biggest delay, aside from pulmonary issues. She also has right ventricular heart failure due to pulmonary hypertension. It's treated with Revatio (aka sildenafil/viagra). We have a kids cart that we use for transporting but don't go anywhere except specialist appointments. We have a great pediatrician who does house calls, he orders labs to be drawn at home.

Both my hubby and I work and we have 3 other children, including a 23 month old. Yep, it's been a rough transition for everyone.

We do our nursing through an agency affiliated with our local Children's hospital, the first two weeks we had virtually no night nursing, luckily it's picked up some as nurses have come off of maternity leave. We were lucky in that one of our favorite NICU nurses began working for our agency, specifically to work with Riley.

All of our hours are through the Katie Beckett waiver as our insurance doesn't provide for PDN. We get 38 hours for work, 56 for night and 12 for respite per week.

Good luck. For us it has been hard but worth it and is definitely a lifestyle change. We love having her home and being able to rock and cuddle in the middle of the night if we so desire. Feel free to visit her caringbridge site, the site name is rileyjaneprochaska

Since we're still new at this we probably aren't the best source but I've had several of my questions answered her very well. Let us know how it goes!

Teri

[Dylansmom]

Hello and Welcome~

As for nursing- we have never received all of our hours, but have managed and have our *normal*. Dylan is vent dependent at night, so I just get up when he alarms then go back to bed.

We also had the vent 24/7 for the first 2 years, we used a wagon in the very begining, then a double stroller, then a sit n stand stroller and now just a regular stroller. All I can say is they don't last very long with all the extra weight.

Good Luck in bringing home Lucy home, I hope everything fallsinto place soon!!

With Love,
Brittany
________
Coach Handbags

[T-bone]

Lizzy and Lucy, those are great names. Love them.

Welcome to the board.

Tess

[JWorthington]

Hi and welcome.

Sam is not on a vent, but does have O2. He will be 4 on Sunday and will start regular school in September (at present he is in preschool and loving it!). IMO home beats hospital anytime(Sam is a victim of hospital acquired infection so we try to avoid it as much as possible). Of course, it is scary bringing a trached and technology dependent child home, but life is so much better when you can do your own thing in your own, comfortable surroundings. Sam is mobile, but because of all the equipment he still goes by buggy a lot of the time as I can't hold onto his hand and manage all the equipment. He loves to run in school! We have a heavy duty buggy and our pt got us a solid metal tray to fit underneath (instead of the usual basket). This carries the suction machine, emergency trach supplies and O2, and I hang the ambu bag and diaper bag on the handles. All our nursing is taken up in preschool now, we don't have home nursing (we live in the uk and things are different here), though we do get the odd evening so that DH and I can go out. Its not easy, but it is doable, and you will relax more once you get Lucy home. It is a little scary too, but you soon find your own ways of doing things and that you feel happy with.
Good luck Julie

[Doug-Iowa]

Julie is absolutely right about being home. There truely is no place like it. Welcome to the boards.

[lovemymak]

Hi Sarah! I am so glad your little one will be coming home soon. We had a hard time adjusting to home life vs hospital life in the beginning, but it's also exciting and you have so much energy to get things exactly the way that they will work for you! Keturah is on a vent while she is sleeping. We also have to load it with us on car trips to the Dr since it's an hour and a half away. We do the double stroller method to transport everything. We don't always have all our overnights covered by nurses. If we don't have nurses we stay awake in shifts. I go to bed from 7p-1a and hubby goes to bed 1a-7a. We each get 6 solid hours and can still properly care for Keturah. Keep in touch when Lucy comes home and let us know how you are handling everything and if you have any questions!

Sarah

[sandra]

Welcome! You will find once you get home that a routine will be established and it is doable. Exhausting, yes, but so wonderful to be home.

We brought Brian home at 9 months on a vent. We did have 24/7 nursing while he was on a vent. It was an adjustment getting used to having people in our home, but we needed them. The nurses became like family. I am thankful that we had them, expecially while Brian was on the vent.

[madelyn and rynns mom]

Welcome to the boards!!!!

Kris