It Happened…And We Survived

Every parent has a fear that they just don’t want to face. And every parent’s fears can be similar or drastically different and most of them change over time and with experience. Over the past year, Matt and my fears have morphed incredibly from the fear of birthing an unhealthy child, to fear of saying good-bye to fears of caring for a special needs child. Lately, one of my biggest fears is having to re-insert Jack’s Mic-key button if it were to be pulled or fall out. For this reason, Matt and I check the water in the balloon often to make sure that it is in securely and won’t fall out accidentally.

Cut to Wednesday night. Matt’s mom came over after she left work to watch Jack. Matt and I were getting ready to go to a movie that was sponsored by my company. Jack was laying on the floor, being set up for his 6pm bolus feed when Debbie arrived at our house. She set down her things and sat on the couch while Jack was being ‘suited up’. As soon as he was ready and his pump was turned on and running, she reached down to pick him up. In the same movement, her foot landed on Jack’s feeding tube and the button came out. It gracefully popped out of his abdomen and landed on the area rub between her and Matt. Now, just to be clear, this was a total accident and there is no blame pointed anywhere. This is just a milestone to share.

Of course the hysteria commenced immediately. Debbie and Matt were lamenting loudly, Jack was crying from fear of the obvious concern and I was not so calmly yelling at everyone else to calm down.  Thinking back at it at this point, it would have made a great sitcom scenario in which only families dealing with gastric feeding tubes would appreciate.

Once Jack was calm and a towel was placed over his belly, Debbie occupied Jack, Matt kept him from kicking around excessively and I rounded up the supplies. It was time to face our fears and insert Jack’s emergency Mic-key button. The water was drawn in the new syringe to inflate the  button after it is inserted and the button ‘stem’ was lubricated with a water based lubricant. The only thing left was to muster up the courage to insert the collapsed balloon into a gastric stoma the diameter of a coffee stirrer (the average coffee stirrer is 3 millimeters in diameter and a 12-french gastric tube is 4 milimeters…close enough).

But it’s done. I was able to insert the new button and fill the balloon with 5 milliliters of water. Matt, however had to finish cleaning and dressing the button site because my hands were shaking too bad to apply the powder.

Observe, the old button; balloon still filled to the recently-refilled 5 milliliters. Jack, you’re a trooper!

                         

I hear that most gastric buttons find their way out of their stomas pretty often so I was pleasantly surprised to finally realize that Jack’s lasted a couple of days over 6 months.

I Wish I Would Have Known Then…

…What I do now. This posts is geared towards all the things that I wish I would have known before now. These are things that I know now because of experience, things that I found out about too late, and things that I was told but was lost in the sea of over-information.There are blue links below to guide you for more information.

Volume 1: Financial Assistance and Programs

Become an LPN

In home nursing is expensive! In the state of Ohio (I can’t speak for other locations), you can care for your own child with special needs and get paid for it. That’s right! Be a Stay-At-Home-Mom (SAHM) and get paid for the toughest and most rewarding job that life has to offer.

Some babies will go home after hospitalization and require special needs. For example, Jack requires oxygen and continuous feeding 24 hours a day. He also has an ileostomy that requires (constant) attention. Teamed with the fact that he is not healthy enough for day care, he requires an in-home nurse while Matt and I work out of the home. Now speaking from experience, the in-home nurse staffing companies are less than accomidating when it comes to finding a nurse that will fit your needs as well as someone that you will be comfortable having take care of your disabled/fragile child in your home. An LPN certification will be your life-saver at this point (unless your child requires a RN). Some in-home nursing agencies will actually hire you on to take care of your own child! I have not researched the average income you could receive from such ventures, but for some and especially those that intend to be SAHM, this could be a dream come true. It can take up to one year to receive your certification and some staffing companies require that you have your LPN for a minimum of 1 year prior to hire, but there are some out there that will hire you to care for your own child with only the certification. At this point, the staffing company will bill your insurance or government sponsored program which will in turn pay you.

I am only a couple credits away from being eligable to take the LPN certification exam (dietetics undergraduate). So why am I not taking the test? Matt feels that my current career is too valuable to leave for a two year gig in the long run. Maybe he’s right…I’m still struggling.

Government Sponsored Programs

My last point brings me to government sponsored programs. These all may vary depending on your residence but below are the programs that Matt and I are researching for our situations. All these programs have some kind of quilifier to be eligable for benefits, so check with your city, county, or state. I have found that the best resource for this is the social worker at the hospital of which your child was/is being treated. Cincinnati Children’s Hospital was (and continues to be) more than helpful!

BCMH:Bureau for Children with Medical Hanicaps. The BCMH website lists major componants of the program to include “conducting quality assurance activities to establish standards of care and to determine unmet needs of children with handicaps and their families; funding services for the diagnosis and treatment of medically eligible conditions; collaborating with public health nurses and local health departments to assist in increasing access to care; supporting service coordination for children with selected diagnoses; and assisting families to access and utilize appropriate sources of payment for services for their child.”  This program tends to work along side Medicaid within the Ohio Department of Health (ODH).

Medicaid: Ohio Medicaid is offered through the Ohio Department of Job and Family Services (ODJFS) and assists in the financial aspect of medical care. We are currently submitting some of Jack’s hospital bills to be covered by Medicaid.

Social Security: In Ohio, you are required to be approved for SSI before you can apply and be approved for Medicaid. Thought this isn’t a major support in Jack’s financial sand pit but anything helps, and this opens the door to other programs available to disabled children.

Help Me Grow: Provided by Ohio Department of Health “Help Me Grow provides many types of services to infants and toddlers with developmental delays or disabilities and their families. A system of providers works together to provide early identification and family-centered services that ensure your child receives identified services and access to community resources. The program will provide appropriate specialized services and will help you identify present and future needs of your child.” I know that this program is offered in other locales with a different name. Check with your local health department for the name of the program in your area. Matt and I are currently setting Jack up for his Developmental Evaluation to see where he falls on the developmental milestones. His Occupational, Physical and Speech Thrapies will start in the home once his need level is established.

Easter Seals Disability Services: The Easter Seals provide services and support to ensure that children with diabilities “can live, learn, work and play in our communities.” We are using their services to help minimize the financial burden that comes with early intervention. An example is assistance in the cost of a orthotic helmet to correct plagiocephaly or ‘flat head syndrome’ which Jack suffers due to being bed-ridden for an extended period of time. The average helmet can cost around $4000 and most insurance companies view this as cosmetic and will not cover the cost.

Easter Seals is an international charitable organization and is not reginally specific. I encourage everyone to contect the Easter Seals and inquire about assistance.

That will be it for now. I will add more in a continuing post. Keep checking back.

Is there a program that you are aware of that could help parents of a disabled or speacial needs child? Please comment and let us know!

Maria Lin: 7 Things You Don’t Know About A Special Needs Parent

Maria Lin: 7 Things You Don’t Know About A Special Needs Parent.

This article was posted on Monday in the Huffington Post. After reading it, I can now start to realize what I am feeling now that Jack is home and I am his caregiver. I thought I would be scared to have him home, but I am so much more than that. I have been spending the last couple weeks with Jack and trying to realize what I feel and how I should act. It’s hard to define your feeling when there are so many colliding in your head that you can’t pick out just one.

I do have to agree with Maria’s last sentence, however. This whole experience is hard, but I wouldn’t want my life without Jack.