Home Oxygen Parent Exchange

Music Group - May 21, 2011 - Last One For The Season!

2011-05-16T16:40:00.002-04:00

We have reached the end of another wonderful season for the HOPE music group. We hope that you will be able to join us for the last class of the season.

Our talented music teacher, Sara, has the honor of performing at Earth Fest this weekend. Therefore, we will only be holding one group at 9:30am this month. We will not restrict the group to the usual number in order ensure that everyone who would like to participate this month can. Since we are having only one class, we want to mention that it will likely be a larger group than everyone has experienced in previous months.

Please RSVP so that we know how many people to expect.

We look forward to seeing you this weekend.

2010-2011 dates are:

May – 21st – last group

The timeline will be as follows:

9:15 arrival for the first group

9:30-10:20 first music class

10:30-11:00 parent discussion

*** We will continue to meet in Byers A and B on the first floor of the Enders Research Building, the building just to the right of Children's as you enter the Parking Circle. Free parking stickers will be provided.

We are looking forward to seeing everyone. Thanks!!

Larry Rhein, Brooke Corder, Tash Kiernan, Rena Holzer, and Phoebe Chase

March 2011 Music Class!

2011-03-16T16:51:00.001-04:00

Spring is finally (maybe? hopefully?) upon us! Please take the time to read the message below and RSVP if you’d like to attend!

The Home Oxygen Parent Exchange is a program dedicated to providing safe social outings for graduates of the NICU and their families in order to meet other families with similar issues of transitioning to life after the NICU. The class is offered one time per month from October to May.

2010-2011 dates are:

March – 26th

April – 30th

May – 21st – last group

We will be offering two music classes with a parent discussion group in between. The goal is that one group will attend the first music class and stay for the parent group. Then the second group will come for this same parent discussion time and attend the second music class. A sibling program will be offered in the adjoining room for older siblings who wish to attend.

The timeline will be as follows:

9:15 arrival for the first group

9:30-10:20 first music class

10:15 arrival for the second group

10:30-11:00 parent discussion

11:00-11:50 second music class

We will continue to meet in Byers A and B on the first floor of the Enders Research Building, the building just to the right of Children’s as you enter the Parking Circle. Free parking stickers will be provided.

***When you RSVP, please indicate whether you prefer to attend the first or the second class. It is critical that you RSVP because we will be limiting each group to no more than 14 children. Once you reply, you will receive a confirmation. If the time slot that you chose is already full, you will be invited to attend the other time or will be asked to wait until next month.

***Please let me know if you will be able to make the March date and if any siblings will be coming so we can prepare our Child Life volunteers.

Visit the website at http://hopeboston.wordpress.com. Please take a look, make comments, and provide us with any feedback on things that you would like to see included. Thank you to Amy Farrell who made the changes and will continue to update the website as we move forward.

We are looking forward to seeing everyone. Thanks!!

Welcome Back!

2009-11-29T21:32:00.003-05:00

It's been a while since we updated our website, and we've added a lot of new families, so we wanted to offer a welcome to new families, a welcome back to our returning families, and also provide some new updates about our program.

As many of you know, the program has expanded dramatically, so now we are offering two classes to accommodate the larger numbers.
The Early Class starts at 9:30 and runs until 10:30, with discussion from 10:30 to 11.
The Later Class begins with the discussion at 10:30 (shared with members from the Early Class) and then the class itself runs from 11 to noon.

We have had to change our location - we are still based at Children's, but instead of our room in the Enders Building, we will be in the Main Pavilion Dining Room - as you enter the main entrance of Children's, go up the large staircase to your left, and it is the room on your left, next to the Blood Donor Center.

We were asked to hold off on the November date due to safety concerns about Swine Flu, specifically that by that time, few children had been immunized. We are expecting to be able to proceed in December.

Please don't hesitate to contact us with questions. We'll look forward to seeing you at our classes!

Join the Mail List

2008-12-19T15:08:00.006-05:00

If you would like to stay informed about the program, know about schedule changes or email the HOPE Program about ideas, please use:

hope.program.chb@gmail.com

Nursing Resources

2008-12-19T14:42:00.003-05:00

At the December 13 meeting, the topic of home nursing was brought up. There was discussion around the difficulty of finding qualified nurses and - if a family does find a good nurse - the expense.

It would be interesting to hear more on how parents deal with this issue; how couples find time for themselves and get a break from the daily routine of care.

We'd also like to hear input on the possibility of creating a list of nurses. Are there nurses that families have had good luck with - nurses that are well qualified, reliable and would be willing to help other families? What kind of rates do these nurses or agencies usually charge?

Would parents post their feedback by clicking on "comments" below. Thanks!

HOPE Benefit Event at the Vault

2008-11-09T16:36:00.020-05:00

On Saturday November 8th, the HOPE Program held its first Benefit Event at the Vault in downtown Boston. See the photos to the right.

We had a great turnout and everyone had a great time! Over $5000 was raised to help support our program!

Thanks to everyone who attended and made the night such a success!

Getting Ready For The Winter

2008-10-08T20:01:00.003-04:00

At our first class, the opening discussion topic was "Getting Ready for the Winter". I wanted to share some of the advice that was discussed at this session.
(1) Know your child's healthy baseline breathing status, and make sure your pediatrician also knows it before the start of the viral season.
This means counting the respiratory rate, determining how long it takes your child to finish an average feed, whether there are baseline retractions, baseline saturation, etc. It helps to keep this information written, on your refrigerator, so you can refer to it for comparison wen you think your child might be sick.
(2) Know your winter sick plan.
Whatever baseline regimen your child is on, the clinic should have helped discuss what you should use as a first-line treatment when your child starts to get sick. If you are on no maintenance meds, it may mean starting the use of bronchodilators. If you're on inhaled steroid, it may mean increasing the dosing. If you are not sure what your sick plan is, then discuss with your providers at the CHILD clinic or your pediatrician's office.
(3) Make sure your child gets all eligible protection.
If your child is eligible for Synagis or the flu vaccine, make sure this is in place.
(4) Make sure you have the medications you need in your home.
Don't wait for the midnight snowstorm to run out to the pharmacy to get your medication prescriptions filled!
(5) Practice common-sense infection control.
Try to avoid settings where your child might come into contact with people with obvious viral symptoms. Bring plenty of Purell or WetWipes when you are out and about.
(6) If you ever have any questions about your child's breathing, don't hesitate to get help! Talk through questions with your pediatrician or Dr. RHein and the CHILD Clinic staff!

Please feel free to contact us or post comments if you have additional suggestions that may help other families!

2008-08-26T16:50:00.029-04:00

Background:
The Home Oxygen Parent Exchange is a program dedicated to the providing safe social outings for graduates of the NICU and their families in order to meet other families with similar issues of transitioning to life after the NICU.

Target Population:
The program is specifically targeted to families of NICU graduates who still may require home oxygen supplementation or home ventilation, but will also be open to any graduates from the NICU without such needs. Most children participating in the program will be under two years of age.

All parents/guardians and caregivers (home health nurses) are welcome to attend. Siblings of NICU graduates will be invited to participate in a simultaneous program, but must RSVP to ensure that we can staff appropriately.

All participants should be free of obvious viral symptoms to protect other attendees.

Schedule:
Our first events are scheduled for October and November of 2008. Based on the anticipated success of these dates, we expect the program to continue on a monthly basis.

The program will run on the first Saturday of each month, from 9:30 am to 11:15 am:

9:30-10am: Refreshments will be available.
10am-10:40 am : Music class
10:40-11:15am : Facilitated discussion

Location:
The program will be located in the Enders Research Building, on the 1st floor in rooms Byers A and Byers B. The Enders Building is attached to Children's. As you stand in the main parking circle facing the large revolving door at the main entrance to Children's, when you look to your right, you will see a smaller revolving door. That is the entrance to the Enders Building. The Byers rooms are to the right as soon as you enter the building.

Discussion Group Facilitation:
An experienced NICU graduate family member will co-facilitate discussions with our social workers and/or Dr. Rhein.

We are asking everyone to post ideas on specific topics for discussion.