Also new to site

Hi!

My name is Leigh Sumner, I have a daugther who is 14 months old and has a trach and a g-tube. She has had a trach for almost a year now. She was born at 34 weeks at 4lbs 2oz and was in the hospital for close to five months. Having children at home with medical needs can be hard and I was just looking for some advice and to read about other families with the same issues as mine. Right now we are fighting ear infections and trach infections. I work part time and have at home nursing care. Does anybody else have at home nursing care? How do you deal with somebody else taking care of your child?

Katelyn is now 1 year and almost two months old and except for the ear infection, is doing great. She has physical and speech therapy. She is now starting to vocalize, which is great. It took her awhile to learn how to sit on her own. Now we are trying to get her to crawl. Which has been a hard process. I guess its hard with the g-tube and trach tubes. She has a heart condition (AVSD) and requires 02 24/7 and is fed 24 hours a day. She had a malrotation and some other problems with her gastro system. But we are trying to decrease the rate of her food and increase the amount...which is hard with her heart condition and all. She retains fluid, but is own two diuretics. She has a chromosome inversion of the 4th chromosome. Katelyns history is forever long...I could go on for days.

Do you guys take your kids out a lot? I was advise not to, but she needs to get out of the house!!!!!!!! Do any of you have older kids? How do you find time for them too? I have a million questions.

thanks,
leigh

[sandra]

Welcome Leigh,

We don't take Brian out except for dr's appt's. We are looking forward to spring when we are going to get a little adventerous and take him out some. I even bought a little outfit that says short stop on it, so he can wear it to his big brother's baseball game.
I have 3 other children. It is hard to find time for everyone, but I try really hard. I try to schedule the nursing hours that I have for when the older ones are home from school, so that frees me up some to help the other kids. Since you work, that may not work for you.
You will find lots of support on this board. Please keep us up to date on Kaitlyn.

Sandra

[Evy]

Hi Leigh,
Welcome and I'm glad you found this board. The mothers here have knowledge beyond belief and all are willing to share with others. My grandson has a trach and G tube and has for one year now. Since it's winter, my daughter and the boys stay home except for visiting relatives (if we're all infection free). We are all concerned about germs and infections so the risk of going to the mall doesn't seem worth it right now. The boys are only 18 months old so they don't know what's out there anyway but we are anxious to show them off and do normal things away from home. Come spring and more growth I'm sure they will get out more.

My daughter has 16 hr of nursing care a day. Weekends are a different matter and she often is on her own. Other than one daytime and one nighttime nurse the others call off all the time. She weeded out several nurses before she found the day and night nurse she has now. Some were simply incompetent and some just didn't fit in with the family. I think it's always difficult to have someone else taking care of your children probably even more so in your own home. I'm sure there will be others with experience to share. I always recommend newcomers read past posts. It has been invaluable to me. Looking forward to hearing more from you about your daughter. I'm sure you have experience that will be helpful to others also.

Evy

[Stefan & Jennifer]

I know that Evy meant no insult, but there's a few dads on the board who have a lot of knowledge too. Welcome, you'll find a lot of support here.

We do take my son out a lot, but we take precautions. We pack his portable suction machine with hand sanitizer and anti-bacterial wipes. We won't go to anyone's house who has sick household members. At restaurants we wipe down the high chair and everything within Jake's immediate reach with anti-bacterial wipes and we keep an HME on him when we can.

We take Jake's for walks around the block and stuff like that as well. We clean his hands a lot when we're out and about. He loves going bye-bye so much, that it's hard to keep him at home all the time. When he's sick, of course, we don't take him out except to doctor's appointments.

Good luck and welcome again!

[Evy]

Sorry about that Stefan! I have just as much respect for you dads as I do moms

[Laurie]

Welcome - My son was born at 27 weeks and had his trach until about 7 months ago. He will be three at the end of February. We still have nurses 16 hours a day, seven days per week, due to Evan's heavy reliance on his G tube, but we opted for no day nurse on Saturday and a half day on Sunday, just to get some family time. We have maintained this schedule since day 1. Also, we have the day nurse from 9AM to 6PM and the night nurse from 11PM-7AM so that Evan is cared for by his parents only in the morning and evening, just like a "normal" kid with working parents. The home nursing experience has been mostly a positive one for our family, and I appreciate all they do, and my son is attached to several of them. They also respect our wishes in his care, etc. which is very important. Still, the lack of privacy, the need to document every calorie in and drop of urine out, and so on, can get very wearying.

We kept Evan very isolated until his trach was removed, and I think limiting outings to crowded places like malls, preschools, restaurants and so on during cold and flu season is a good baseline idea for a child with a trach. However, I also think your approach should depend on how long (approximately) you expect the child to have the trach. Evan's medical profile suggested his trach was indeed a temporary thing, so we decided to wait until it came out before allowing Evan to do a number of different activities. But, if you expect the trach to be part of your life for several years, then I would have the child out and about more, and just use the cleanliness precautions Stefan suggested.

My two cents on these complex issues. Again, welcome!

[mistymitcheson]

Welcome to the group. I'm new as well. I have a three year old daughter who has had her trach and g-tube since birth(She was born with a left lung only). She is only on her vent at night with O2. I agree with Laura about the amount of time your child is expected to have the trach. With Holly we are expecting at least another 2-3 years, so like Stefan we do take her out quite a bit, and we do the anti-bact. thing as well(I told my husband we need to buy stock in the company). Not to sound negative, but I don't know how long I have with her, so I want her to enjoy life as much as possible. She loves to go and she loves people so I hate to see her closed up in the house. We are actually going to Disney Land in May thanks to the Dream Factory.
Again it is really according to your childs health problems.
Welcome and Good Luck!!

[abby]

Welcome!You definitely came to the right place for support.
Jared is almost 18 months (15 adjusted) and has had a trach for a bit over a yr due to prematurity and severe bpd (newly found subglottic stenosis) We are basically hermits due to not wanting to get him sick and the fact that he only came off the vent full time back in September (right before the start of RSV season) However, when it was nice out we always went for daily walks around the neighborhood or over to visit my parents. We take stock in purell as Im sure everyone on this board does!!
Welcome!
Oh- Jared just started crawling last month. Yes, due to trachs, gtubes, their fight for survival at an early age, the kids are often delayed. I think we all have learned though that they have amazing drive and will. They are all truly an inspiration to everyone!

[hcs_mom]

Leigh,

Welcome. As already said, you will find so much information here...everyone is very supportive...and sometimes the only group of people who really understand what you are going through.

We don't take Hannah anywhere. She is a former 25-weeker and has BPD and was trached for subglottic stenosis. Her lungs are improving, but I don't want to "test" them by exposing her to unnecessary germs. Her big sister brings home enough from school. On nice days, we go outside, or for a walk in the park, but I usually try to avoid large crowds in tight spaces. I've even moved all of her regular check-ups to the end of March to avoid all the colds/flu/RSV at the hospital.

We too have battled ear and trach infections. The ear infections have subsided since Hannah got tubes in September. They did tube insertion and an airway scope all at once. As for the trach infections, ugh...we just can't get away from them.

We do have nursing...I work part time, so Hannah has a day nurse for when I'm working and we also have night nurses. It has taken us a LONG time to weed out all the "fantastic" nurses the agency tried to send, but we have 3 core nurses now and I refuse anyone else they try to send. Once we found the right nurses for our home and for Hannah, our experience with nursing has gotten much better.

Hannah was delayed too and we are working on that. She's picked up on the gross motor stuff...we are really strugging to transition her to table food. We work with speech therapy once a week...we are getting there, but as anyone on here can tell you, overcoming feeding issues is just a slow process.

Again, welcome. Visit us often.
Jennie

[Jimmysmom]

Welcome

This is a great site. My name is Anne and my son Jimmy is 5 and has had his g-tube. trach and been vent dependent since the age of 6 months. Thinking back I guess we didn't go many places the first year either, it seemed that we had enough dr. visits and therapy visits to keep us busy. After that we tried to get him out whenever we could. At first it was hard as he would get very anxious where ever we went. He started pre-school at the age of 3. School has really helped him get over his anxiety. Due to his diagnosis Jimmy has low muscle tone all over but worse in his lower legs and hands so he requires a wheelchair to get around.
Nursing is always a lot of fun. Jimmy was approved for 16hrs a day but we have never had more than 8hrs a day and every other weekend 8 hrs. Having nurses in the home can be trying at times but for the most of the time it is a blessing and allows me to take care of other things.
The best thing about this site is that there is never a "dumb" question. No matter what you are going through there will probably be a least one person here that has gone through something similar.

Take care

Anne