Baby with a trach | Imamother

amother

Rose

Wed, Aug 16 2017, 9:25 pm

amother wrote:

Yes, my son was trached and I had a toddler in the house. What do you want to know?

General advice, tips etc. I'm in NY.
Also, did your son eat by mouth or GT? was he trached as a newborn? I'm curious to know if I'll be able to nurse her. right now she as an issue which doesn't allow her to nurse but I'm wondering if in another few months when that is resolved iy'H if she will be able to. (If I'll still have a milk supply)

amother

Rose

Wed, Aug 16 2017, 9:54 pm

Havtcha wrote:

My son had a trache for a year. He had an NG tube and was able to eat by mouth. Is your baby on a ventilator? We had nursing care for 16 hours a day. its a very challenging thing, I hope it will go smoothly and not stressful for you.

Her surgery was postponed so she is still intubated on vent. we are not anticipating her needing vent support though as her issue is airway, not respiratory.

was the 16 hr nursing care in NY though?
Also, did the hospital train you in everything? The social worker is suggesting we go to facility/rehab first as they do more intensive training there for the family...

amother

Ecru

Thu, Aug 17 2017, 1:48 am

amother wrote:

My son had a G-tube and did not eat by mouth. He was trached as a newborn. I pumped for him for a long time before switching to formula.

We did go to rehab and got our training there, but that wasn't the reason we went. If he would not have needed rehab, the hospital would have trained us. In retrospect, I'm glad we went because there were a lot of things they took care of for us that the PICU in a regular hospital doesn't think of. I highly recommend it.

Some general advice: Breathe. This seems like a huge deal to you now because it is, but within a short time, this will be your new normal and you will get through it. Life will go on, though it will be different than before. You will get used to it and your home can still be a happy and functional one. This does not have to take over your life.

As far as having a toddler around, you want to make sure s/he knows from the start where the boundaries are. Try to let him be involved in the baby's care as much as possible, I.e., take him into the room while you're suctioning, maybe let her turn on the suction machine for you when you ask, etc. You might also want to get him a doll and make it a "trach" so he can suction it himself. This should make it a little less scary for him.

If you don't have one, consider getting a double stroller with a very large basket so you can take the two of them out and keep the baby's medical equipment underneath. Make sure you have portable versions of everything--suction machine, pulse oximeter, a small oxygen tank, feeding pump if you need, etc. Try to go out and lead as normal a life as possible. It's hard in the beginning, but you do get used to it.

We did not get any nursing help, but if you do, that will hopefully make things easier for you. I know Brooklyn people who got 16 hours a day (not 24).

amother

Rose

Thu, Aug 17 2017, 8:16 am

Thanks Ecru.

I think pumping long term will be the hardest for me in this whole situation lol!

Can you give me an example of something they took care of in Rehab and not in hospital? was it equipment related or training related or something totally different?

How many people did you have trained in for trach care/change?

Another thing, my siblings wedding is coming up, and it will be in a different city. what in the world am I going to do? even if I'm covered for the full afternoon/night of the wedding I will not be allowed to leave the nurse home alone...

To those who have/had nursing care @ home- do you keep a video monitor in the room to keep 'tabs' on the child/nurse?

amother

Ecru

Thu, Aug 17 2017, 10:00 am

Maybe your baby will be able to eat by mouth. Mine couldn't because he had no swallow, not because of the trach. Plenty of people with trachs eat normally.

Rehab was great mostly with equipment. Their goal was to make everything as portable as possible so we could get out and lead normal lives. They also made him an appropriate stroller that the hospital would not have done. Another nice thing about being in rehab was connecting with many other parents in a similar situation. In the hospital, it was only us.

Only I did the training and then I trained my husband and eventually my mother so she could babysit.

Are you never allowed to leave the nurse home alone or is it because you're leaving the city? I know my friend definitely leaves her child home with the nurse while she goes shopping.

Can you take the baby with you to the wedding along with the nurse?

We did use a video monitor but that was without a nurse. It was so we could see the baby and know what was going on with him without getting out of bed every time something beeped.

amother

Brunette

Thu, Aug 17 2017, 10:12 am

amother wrote:

Worst case you go and dh stays home with the baby. Other options are seeing if your in laws might be willing to stay with your baby or try calling your local chessed organizations to see if anyone with experience in this is willing to stay for a day.

amother

Rose

Sun, Aug 20 2017, 1:13 pm

amother wrote:

She will most likely not be able to eat by mouth for a while.
What kind of stroller did he have? Did he also have positioning issues- or it was a regular stroller that was modified? I would love to c a picture of the stroller.

Was your child oxgyen or vent dependant?

The social worker mentioned something about not being allowed to leave the nurse home alone. I guess will c about that once we're home and settled

amother

Ecru

Sun, Aug 20 2017, 7:45 pm

As a newborn, he was in a regular stroller. He had no head control and was very spastic, so he had a special stroller once he turned 6 months so he could be seated. I'll see if I can find a picture of the stroller.

My son was vent dependent mostly at night, but when he got older he needed it during the day as well. When he was sick, he would occasionally need oxygen as well.

Find out about the nurse. I'm 100% sure my friend leaves her child home alone with the nurse quite frequently.

Hatzlacha!

Kugglegirl

Mon, Aug 21 2017, 12:38 am

You can definitely leave a nurse home alone with the baby. Probably they meant that you can not leave the baby and go on vacation/go out of town to a wedding. Everyone who works leaves the baby or child with the nurse. I have overnight nursing & do not keep a nanny cam on the nurses, but I do observe and work with them if they are new with my child.

Wishing you the best with your little one.

Kugglegirl

Mon, Aug 21 2017, 12:54 am

Regarding the wedding - ask your nursing agency as soon as possible if you will be able to use your nurses to travel to the wedding with you. Depending on the state, it may be possible. I know when I wanted to travel, the state I was going to had different medicaid benefits for care, so my agency would not. Alternately, you could arrange for a private pay nurse, either to travel with you, or to care for the baby at the wedding/where you are staying. If your finances permit. Honestly, I have missed many weddings and family simchas since having a child with medical issues. It is just a question of what H'shem really wants of my life & family or friends either understand that or they don't.

You will have to be the one to make a good decision about what is best for your baby, what you have the stamina to do, and the risks to your baby's health, not just with this wedding, but pretty much every day until you see how your baby is doing outside of the hospital or re-bag setting.

Your nurses can come out with you in the community when you feel the baby is doing well enough to handle being out. I hope everything will go well for you and your baby.

mandksima

Tue, Sep 19 2017, 1:25 am

Wow, just saw this post now. My daughter had a trach from 5 months old until 15 month old. Ate normally BH. Was on oxygen as well. She needed physical therapy because she had trouble with crawling/walking. Because she wasn't as mobile, I guess it was easier. She lived in a PICU (after four months in a NICU then home for a month) then rehab hospital until she was 12 months. 16 hours of nursing at home in NJ for 3-6 months. It was quite an ordeal but is a distant memory today as she is 16 years old now! Just wanted to send support and say, you can do this! I had two kids on oxygen at the same time but my other twin didn't have a trach so I can't say what is easier. We just weren't that social for a while Wink

I remember needing to buy a minivan for the babies, their nurse, us parents and all their machines (oxygen cannisters, apnea monitors and trach machine!) We needed to go back and forth to various doctors all of the time. We asked our accountant and wrote off a good portion of the van as it was necessary for medical reasons!

amother

Rose

Sun, Sep 24 2017, 2:27 pm

mandksima wrote:

Wow! happy to hear.

Do you happen to remember if you had a portable suction machine?
We got 1 suction machine from DME which can work on battery only but it is huge & soooo noisy. I see there are machines available to purchase but they're pretty expensive, and then there's one that's handheld, but have no idea if it will work for us. (baby b'H doesn't require constant suctioning, but still can't leave the house without suction machine...)

mandksima

Sun, Sep 24 2017, 2:36 pm

amother wrote:

We only used what we were given at the time. It was portable because we brought it along to doctors or anytime we went out. I remember the noise. I'm sorry but I have no idea what machines are like today but they must be improved since we had ours. I never thought to buy one better and in the end, we only used it 10 months. If you know now that you'll need it for much longer, then investigate more but for us it wasn't worth it.