View Full Version : 1st time here and need help - child still in nicu
08-29-2004, 10:19 PM
Our daughter was born at 24 weeks gestation on 3/8/04 and is still at the NICU - she has a mickey button (g-tube) and trach. and is now on a home vent with O2. Â*We are trying to prepare for her homecoming and don't know what we should get to move her (and all her equipment) around the house - some people have suggested a wagon but I think a double stroller would be more practical . . . any suggestions?
Hello and welcome to this message board. I have a baby with a trach, mickey button and vesticostomy. She is on cpap at night and o2 as well. We just got double of those things. Our insurance paid for them as back-ups. So we keep a o2 tank and cpap in the living room and one in our bedroom. We went and bought one of those storage bins for kids, the one that is like 3 shelves and it has the different colored bins that sit on each shelf and the bins are different sizes. We keep that in her room to store all her "daily needs" and we have one bin that we fill with everything to do her care and emergancy trach change stuff and we leave it in the living room as well. My baby sleeps in a crib in our room so her actual room is full of supplie for now. I hope this helped. I am not sure that I answered your question though!! Sorry
08-29-2004, 11:01 PM
We went the wagon route. Corey came home with a T-Bird ventilator, oxygen, and all of the associated monitors. With such a heavy vent, the wagon worked best. We actually just kept the vent on the wagon and only took it off to load it in and out of the car. We would take the wagon apart then and put it in the trunk. It was certainly not the most convenient way of doing things, but it worked for us. Our wagon was also able to move through doorways pretty easily too.
I can give you the name of wagon we used and other details about our setup if you need it. Just let me know.
Welcome to the board! I wish that I had found it while Corey was still in the hospital.
08-29-2004, 11:05 PM
Thank you for the warm welcome and I will happily take all the advice I can get. This site has already helped me a great deal! Steffanie
08-30-2004, 06:01 AM
I really want to welcome you to the board. My daughter was a 28-weeker, but the size of a 24-weeker, at birth. It is such an interesting ride, but we have navigated thru it, and now she is four years old, and just got her trach out (which is later than most preemies, by the way).
We didn't use anything to move Gaithy around the house, back when she was on the vent 24/7. We had everything set up in the livingroom at first because we had nursing. When we stopped our night nursing, we moved everything into our bedroom. If I wanted to move Gaithy away from her crib/ventilator setup, I would just take her off the vent and put her on her travel vent that was also an LTV 950, but wasn't connected to the heater, but had a travel circuit with Portex HME inline on the circuit. When she was on O2, we had really long tubing that would travel with us...but we had no stairs or anything like that. In fact, we, at that time, were in a small space of about 900 square feet (apartment), so it wasn't that difficult.
I hope that your little girl is doing well, and that she is home with you soon. Gaithy didn't get her trach until she was 7 months old, and I think that was a huge drawback for her. The NICU docs persisted in seeing if she could make it on her own, and she didn't! This all caused us to be in the hospital much longer (her first year) than what we probably would've been. If she had simply been trached earlier and placed on a home vent for homecoming, we would've been better off. After being on the vent for awhile (with the trach) and just having lots of time to grow without struggling to breathe---she started to greatly improve. It wasn't long til I noticed her breath rate slowing ALL the time, to a very normal rate. Her BPD (lung disease) started to resolve, and she obtained a much greater reserve. I would say she has been very healthy since she was about 1.5/2 years old.
I know I've rambled on, but I know you're handling so much right now. If you have any questions, please post...everyone is so helpful here!!! Feel free to email/pm me anytime.
08-30-2004, 08:30 AM
Welcome and I hope Savannah is home soon.
We don't use anything to move Brian around the house. I carry Brian and his pulse ox and the nurse carries his ventilator. We just stay close enough together to transport Brian while he is on the vent. We bought a wagon for this and never used it. Our O2 tubing is long enough to get from Brian's room to the living room, so we let that drag behind. We bring Brian out to play every afternoon. With nursing, I didn't want Brian in the living room all the time. The rest of the family needs a little time without the nurse right there.
When we go out, we use a double stroller. His car seat snaps into the front part of the stroller facing backwards. His suction machine, 2 O2 tanks, pulse ox, and vent go in the second seat. We carry an emergency bag with supplies. We usually leave the back up battery in our vehicle when we are out, because we can bag Brian until someone can go back to the car and get it. It is so heavy.
You will find lots of support on this board. It has been a life line to me. Brian spent 9 mo. in the Nicu and it has been wonderful having him home. You will do great. Email me if you would like a list of what is in our emergency bag. It sounds like Savannah is a lot like Brian. firstname.lastname@example.org
08-30-2004, 09:51 AM
Welcome to the board! We went to Wal Mart and bought a microwave cart. It is wooden and has a drawer and three baskets and it's on wheels. All his equipment sits on it, pulse ox, suction machine, vent, humidifier and feeding pump (dad put a flag pole holder on it and stuck the IV pole in there). We love it and so do our nurses (we get 10 hours during the day.) this way we have all his supplies RIGHT THERE. and everything is always in the same place and you can look at a glance on what you are getting low on ...catheters, 2x2's, sterile H2O, DIAPERS!!!, etc etc. When we found out about the trache my husband tore up the carpet and put hardwood down in all the rooms and that makes the cart easy for us to use. That is what works for us!
08-30-2004, 12:21 PM
I wish your family a speedy and safe homecoming!! Â*
We also have been using a microwave cart for Jonathans, vent and supplies. Â*He is now off he vent for 10 hours per day, so it has become much easier to move him around. Â*Hopefully you will get there soon also. Â*
We have 2 vents from our dme company, so we have one in his room and one in the living room. Â*We also have 3 suction machines, so we are never in a room without one. Â*Keeping supplies in every room really makes things much easier. Â*
I am sure you will get a lot of great advice from everyone here.
Good luck and keep us posted !
Seth and Hannah's Mom
08-30-2004, 01:07 PM
I didn't get a chance to read all of the other replys so I may be telling you something you already heard. Welcome by the way. You found this much earlier than I did. It is a life-line sometimes just to remind you that you are not alone.
We had a wagon early on. My husband built not long after Seth came home, a stand that holds the ventilator, monitor, humidifier, suction machine, feeding pump and supplies. It has big wheels on the bottom that we were able to put Seth on a changing pad on the top and wheel him from room to room in. We ran our o2 lines from the concentrator in the living room with one line to his spot and the other line running to the bedroom. My husband hung them so they run the ceiling so the line isn't laying all over the floor. If you'd like a picture of the stand, I'll send you one. Just let me know. It makes it nice because we have a power strip hung the back of it so there is only one plug to plug in when you get to your destination.
08-30-2004, 05:07 PM
We have a double-stroller and Kid Cart. Alex is on CPAP and O2 24/7 and whenever we go places with him we bring our pulsox, 3 O2 tanks, suction machine, etc. The stroller works pretty well whenever we bring his twin, Aidan along. We end up carrying the stuff we cant put in the stroller. Alex has CP and the Kid Cart provides nice trunk and head support. Once Alex outgrows our stroller, the Kid Cart will be the sole means of "transportation". The cart has a tray underneath we can sit his equipment on too. I hope this helps!!
We actually are lucky enough to have two vents. We worked out a system so that if we travel upstairs/downstairs we put him on the "portable" vent and my husband follows me with the vent while I hold Jared. We do carry the vent with the humidifier up and down the stairs though (big pain)
When going out we just got a normal stroller (graco) and the basket is actually fairly big underneath to house suction machine. We hang the vent and 02 on the handlbars.
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