New here

[Brandon & Angel]

I just wanted to say Welcome....

We already have one thing in Common....My Wife was Trached..2 Years ago on Boxing Day.....

Before you now it ..The Trach becomes Old Hat....

Good Luck....Just getting the Ball Rolling for the Day here....

B and *Angel*

[Brandon & Angel]

Ps....

There is a Topic just below about TUMMY TIME....

We us A Boppy Pillow For that....Angel Luves her Tummy Time...

Gotta Run

B

[Jacob's Mom]

Hi Jen, Welcome to the board! This is a great place for questions, comments, experiences. First of all, congratulations on the birth of your baby girl! The questions and worries you have are so normal and expected, but I promise this will get easier and less stressful as time goes by.

To answer some of your questions: The amount of suction catheters you will be allowed will definitely depend on your insurance or whether or not you have medicaid. MOST companies, and medicaid, I believe, allow 100-150 catheters per month. There was actually a thread a few weeks back discussing how to keep them clean throughout the day. I will search it for you and post the link. As for the nursing visits, it really does vary from situation to situation. We have never had nursing for our son, who is almost two, but, then again, we don't have any other children. That is sometimes a factor, as is the stability of your child. You should contact your insurance company and ask them how many hours of nursing they have approved. Once you know that, you can accept or deny all or any of it. Maybe you could start out with as much as possible, then as you become more comfortable, start weaning down until you feel comfortable.

We use a changing table for SOME of Jacob's equipment and supplies. I strongly suggest buying some of those stacking, plastic drawers from Wal-mart to hold supplies. They are easily accessible and a cinch to keep clean. I found that the compressor was too heavy for the changing table, so for awhile, it actually sat on Jacob's dresser. Now he uses a vent, which is on the top shelf of the changing table, along with the suction machine. The middle shelf holds the pulse-ox machine and apnea monitor, nebulizer and a basket of trach care supplies - cotton swabs, peroxide/water, gauze, spare trach, ky jelly, etc. Diapers and sterile water are both on the bottom shelf. His feeding pump is on an iv pole and his Vest machine is on another table.

As for your other concerns - holding her, bathing her - these will become so second nature to you that you won't even think about it. It is of course important to protect the trach. If she is on the trach collar, that big, bulky tube will be a big reminder. Other times, she should be able to wear a heat-moisture exchange filter that will also protect the trach opening. As for giving a bath, you should be able to do so carefully in an infant tub. Once she gets older, bathing in a few inches of water in the tub shouldn't be a problem. Basically like you said, it is mostly like a normal baby, just use a little more caution!

I wish you much luck! Please keep us posted on what happens.

Take care, Amanda

[hcs_mom]

Hi Jen!

Congratulations! Homecomings are both exciting and overwhelming. My daughter (25 weeker) came home this past Monday. We are still overwhelmed by it all, but it is starting to get better. We are in Ohio too (Cincinnati).

As for your nursing, I would start with the staff at the hospital. The discharge coordinator initiated everything we needed to come home--equipment, nursing, setting up doctor's appointments, etc. This will be your best source, especially if insurance denies the nursing or if you don't feel they have given you enough (the boat we are in now). In this case, the discharge coordinator is also helping us get an appeal together to get additional nursing hours. She is incorporating information from ALL of Hannah's doctors to build the case as to why Hannah needs additional nursing hours (it can't be about why my husband and I need it. It must be for the baby.)

I posted here too, nervous about my daughter's homecoming. If you haven't done so, you might want to read through some of the replies. Excellent advice from other parents who initially had the same fears I did. Just continue to do as much of her care when you are visiting. We had a mandatory overnight "room in" with Hannah before she came home. That was a great experience.

Good luck! Feel free to email me anytime!
Jennie

[abby]

hi jen, I am also preparing for my son's arrival (28wker, surviving twin) after 5 months in the nicu. Its overwhelming I know!
Our insurance (Bcbs along with medicaid) has told us they will provide us with a ton of catheters. Enough to suction every hr if we needed to but again, im sure this depends on state and insurance.
Nursing is a whole other issue and again, depends on the insurance. We were approved for 16hrs/day 7day/wk but we cant find a soul!! With 2 other children in the house I am sure you will qualify for more than once a month. A coordinator at the nicu should be helping you with all of the discharge work.
Bath, holding, tummy time, etc. Are you doing this stuff at the nicu? We have been doing jareds cares as well as bath time, snuggle time, pt, etc with them in the nicu. I find it really helpful bc Im with the nurse if I get worried but am essentially doing it myself. I would try to do these things in the nicu before discharge so you feel comfortable. Although he isnt home yet, I do believe as everyone posts here, eventually it will become second nature to us.
Congrats on your little one!!

[christyw]

Jen,

Welcome to the message board...I have had many great ideas and answers from everyone here...it is a wonderful support.

You will probably grow quite comfortable with your child and with the trach after awhile - especially once she is home with you. A lot of my nervousness came from just being the hospital. Once we were home, and relaxed, everything was much smoother and calmer.

A lot of parents get 16-24 hours PER DAY of nursing. We had 24 hours, 7 days a week at first. I hated that. I started sharply cutting the hours myself. A lot of people just cut down to nights only - I cut down to days instead, because I like having our privacy at night.

Since Gaithy had a vent at first, the supply company set her up with this large cart that held the vent, the suction, nebulizer machine, etc...etc.... I don't know if they would've brought this if she had no vent, but I think they would've. Otherwise, a sturdy, larger, nightstand could be used. We use a nightstand now for Gaithy's compressor (for the mist) and for her other supplies.

Having your mother to help will probably be good. My mother also knows Gaithy's care and that has helped me out a lot. You will need to get out and away from time to time! I know you are nervous - but you will find that it will all grow to be easier and although taking care of a trached child is more challenging at times, you will become a pro at it!

christy

[annerae63]

Jen-
Where in Ohio are you? I'm in Columbus and would love to get together with you if Raegan is here at Childrens.

[christyw]

jen,

I forgot to mention this in my first reply. You had said you were worried about bathing...I use the Evenflow Infant-to-toddler bathtub for Gaithy. It is a white tub with a blue seat in it. The seat reclines, but it is the perfect incline for safely bathing her. I can easily wash her hair (taking a cup to pour rinse water thru her hair). You have to pay attention to the trach area, and if I'm rinsing her body off, I just put my hand as a barrier to the high, upper chest area, so water won't flow there. I have had no problems, no choking/aspiration of water. I know these are still sold, we have Wal-Mart stores down here, and I saw one last night.

christy

Welcome to the board Jen. This board has been a great support. I live in Troy and I could come down to Childrens to talk if you want. Good Luck house hunting! Kim

[akabot]

Where in Indiana will you be moving to? We are in Fort Wayne. If you need info regarding doctors, etc. in Northeast Indiana, let me know.

Amy