Transitioning home after 7 mos in picu

[welovelucy]

Hi everyone, and thanks so much for the warm welcome! Â*If you read my intro, you know that Lucy is 7 months old and has been in the PICU since her birth (last July, 2006). Â*However, we're gearing up to go home soon!! Â* Â* (we think and hope, anyway--but depending on some medical stuff, we might be there a little while still). Â*Lucy's tentative discharge will be the week of Feb. 19!!!! Â*

I've got lots of things on my mind, but here are some questions for you all related to our transition home.

1) Â*How do we get organized at home? Â*We haven't gotten all of our supplies yet, but they're coming in large quantities... and we have a small house. Â*We've got different types of drawers, bins, etc. but I'm still not sure where to put everything. Â*Suggestions? Â*Photos?

2) Â*How do we prepare for our almost 3 year old Lizzy to have her baby sister at home? Â*Lizzy has seen Lucy lots in the hospital, but I'm sure she doesn't quite "get" that Lucy will actually *live* with us. Â*She seems happy that we'll bring the baby home soon, but I'm sure there's still the whole toddler jealousy thing. Â*Also, how do we cope with not having as much time for Lizzy and/or being tied up with medical stuff for Lucy (e.g., cares, meds, maneuvering equipment, etc.)

3) Â*How do I keep Lucy warm outside? Â*In particular, how to make it so her vent tubing doesn't freeze? Â*(It's VERY cold where we are.) Â*We don't plan to take her many places right away, but we will have loads of appointments. Â*She has the heated wire circuit, but there's still some rainout in her tubing, and how do I prevent it from freezing when we go outside?? Â*I always used blankets in the carseat in the winter with Lizzy, but I can't really pile blankets on top of all of the vent tubing...

4) Â*How on earth do I take her anywhere by myself?? Â*Most of the time I'll have help to go places, at least at first, but even inside our house, how do I get her from one floor to the other?

I'm sure there's more, but this is what's on my mind right now!!

--Sarah

[marqus'smom]

congrats on the home comeing it can be very overwelming...
Now the frist thing about organizing, it will never happen to what you want... we have been home now for 8 months and i STILL dont have it perfictly. I have 3-drawerd storage contaners that i keep in my liveing room that has all his supplies in and then some in his bedroom. I guess its where you want to put it. the vent thing i cant really say much my boys not on one but i do know they told me to cover his tubeing to is suction with a towel or something...dont know if it applies... Then about the takeing her out by yourself, I know you can do it. Its much harder but as a single mom i have learned that if i want a life of some sort i have to do it ALL myself. Through time you will learn what works best. I also dont have a car so i depend on my stroller. I suggest one with large storage, thats a must! also with a little window or something to make sure you can always see them... The car thing, For my dads car I bought a second rerview mirror to see marqus when no one could sit with him...
there are so many things you can do to make do, but you will also lose out in some as well...
best of luck...

[Kate]

Organization--hopefully Sandra (I think that is who it was) will post her photo of her organization! It's GREAT! We use a dresser-top drawer is stuff we use all the time--2x2s, qtips, saline...(the rest of drawers are clothes) then we have a 3 drawer organizer with more stuff. Then we also have a shelf/closet with his sterile water, tubing and just extra suction caths. Oh--we keep some suction caths in one of the dresser drawers also. We aren't all that organized but it works for us. I also keep a rubermaid tub in our living room and upstairs den that has stuff in it that we may need so we aren't carting EVERYTHING around.

The 3 year old-sorry can't help you there. Mitchell is our one and only.

Taking her out. I guess when Mitchell came home-we rarely took him out. Only for appointments. Then I tried to schedule when my hubby could help. I didn't feel comfortable taking him by myself, but after a couple of months-I did and now do. At that point he was able to tollerate his HME-so we really didn't have to have him "hooked up" to anything.
When we had to bring him out when it was cold we had one of those things that covered the car seat. (again he wasn't hooked up though) I'm sure someone will have more ideas about this.

I'm excited for you. It will be very overwhelming at first...but you'll get it all figured out with time. Honestly, trial and error along with these smart ladies....you'll get through.

[willsmom]

I am so excited you are getting to bring your little angel home!!

Our organization. hmmmmm. In Will's room, we bought a three drawer dresser/changing table that we filled up with all of his supplies. Then we used a large basket for our living room supplies and also one for the bedroom (he sleeps in our room).

We didn't have a vent, so I can't help you there. When we first brought Will home, it always took two of us to take him anywhere. Then as time went on, we got more comfortable with hauling everything and were able to take him all by ourselves. I know you can do it!!

[Livi's_mama]

While this is fresh on my brain....the tubing won't freeze because you won't use the heated wires when traveling, only when using the humidifier at home. You'll just use basic tubing which hooks right to the vent.

Now on to organization, which I am the Queen of!

We have a kitchen cart that has all of Livi's things on it and we can just pull it from room to room.

Supplies are kept in bins on a plastic shelf unit in a closet.

I can post a pic of the cart now and I'll have to take a pic of the supplies and post it later.


As for traveling out, I do 99% of it by myself with my son going along too. We have a regular graco stroller that the basket opens up on, we place the suction in the front of the basket then lay the vent down and set the pulse ox on top of it. (I will be taking a pic of it this week when she has appts)

Then we have a small rolling suitcase with all her extras in it. I rarely travel with the battery when we go to doc appts. I just plug her in when we get there. The vent itself should last atleast 30 mins.

CART



Basic stroller

[JWorthington]

Congratulations on the homecoming! You must be so excited.

We have a 3 drawer chest - one of these fairly cheap plastic ones with see through drawers so you can see what supplies are in each drawer. I also have an old storage chest/blanket box. Its great for holding boxes of suction catheters to keep them out of sight, I also put suction tubing, gloves and any other larger items in there. I have an open box of suction catheters just sitting by the bed, but in my lounge I bought a large, floor standing vase (I originally had a porcelain one, but Sam knocked it over on the fireplace, so now I have a wooden one) its quite attractive. We don't have a vent so can't advise you on that.
Our pt got us a solid metal tray that fits underneath Sam's buggy. It holds emergency trach kit, suction machine, O2 and ambubag. Once you get into a routine of going out you will find it quite easy. It is difficult remembering everything at first, but it soon becomes second nature. I frequently remember all Sam's kit then find myself at a shop without my purse! cos I've been so busy trying not to forget Sam's stuff.

Good luck
Juliexxx

[suzanne2545]

The bulk of our supplies are in a closet but smaller amounts are in a basket under Parker's bed. We refill them as needed. The nurses don't restock as part of their "job" but they all know where everything is if they need it.

As for transitioning home: We also have a 2 and a 4 year old. As soon as Parker got out of the NICU we took the boys as often as we could to the hospital to spend time with Parker. This helped them get used to his gear, his noises, etc. Also, washing hands and using antiseptic handwashes were required at the hospital, so it became second nature when it comes to their baby. We asked the nurses to casually mention to the older boys why they have to wash their hands and use "squirt" when the come home from somewhere or before they wanted to touch the baby. They also would talk them through the fact that sometimes there are things that need to be done for Parker "right now." I think hearing it from someone other than mommy and daddy helped them really rise to the occasion when Parker did come home.

Also, we just surrendered to the chaos. House doesn't have to be perfect. Meals don't have to be homemade. A little extra TV doesn't hurt. We allowed these things to ease our transition while Parker was in the hospital and when he came home. W'eve been home 6 weeks now and we are slowly getting into a groove at home so I've begun to cut back on some of it. I"ve also found that now more than ever it is important to find time each day to just get down on the floor and do whatever your kid wants to do. Even if it is just 20 minutes a day of really focusing on them and what they want to do- it makes all the difference in the world.

We also make sure our 4 year old gets to actively participate in explaining all the gear to visitors that might stop by. He is really proud that he knows what everything is and how it all works. He did, however, decline to take an old trach for show and tell day last week. That suggestion by my husband got met with an eye roll and an "are you joking" look.

Good luck. It is so exciting to bring your baby home!

Suzanne

[Isaac'sMomandDad]

Congratulations on going home!

It feels soo good to be home, scary at first, but just so much more comfortable.
What worked for us was having a set up upstairs and downstairs, sort of two stations, so that way you're not running up and down all the time. We have portable suction, suction cathethers, HME valves, saline, as well as extra trach and ties downstairs.

We also had family help when we first got home, my parents stayed with us and did laundry, and cooking so we could concentrate on taking care of Isaac. Remind friends and family that is like coming home with a newborn, and things like a home cooked meal dropped off can be very helpful to you.

[T-bone]

Congrats on the homecoming. I wish you all the best.

Tess

[Laurie]

Congrats on the upcoming homecoming! We took Evan home at about 8 months old with trach, O2, vent while sleeping. We set up his bedroom in the den downstairs, and this was much better than upstairs - it kept him in the mix, the kitchen was right there for cleaning and sterilizing, formula prep, etc. It also allowed us some privacy at night with night nursing - the nurse stayed downstairs with Evan, and we stayed upstairs - she called us in emergencies. We bought a plastic storage shelf for supplies in the room, and stored extra in cardboard boxes in the laundry room. Our house is relatively large and got pretty full of stuff, so be prepared for some clutter. Also, be prepared for the mist machine to be loud.

I did not take Evan out alone, although I know many mom's do. I was lucky to have a lot of nursing help, so I did not have to. I would not recommend it until you have made some outings with someone to help, and then definitely have a second mirror so you can see Lucy.

You can do it!