Crisis brings clarity

9 Nov

Update: Proposition 302, which I discussed last week, did not pass. This means the funding for the First Things First program will not be reallocated, at least for the time being.

Also, I received several messages on Facebook regarding my interest in preschools, and the advice was greatly appreciated. Thank you to those who contributed!

As I mentioned last week, retention of health and wellness programs is a huge concern, and having the right kind of help to get your child through a difficult time is essential.  I never thought I would know this from experience, but I learned all about it a few years ago.

Hannah was born with a serious congenital heart defect in October 2007. We lived in Albuquerque at the time, so at one day old, Hannah had to be flown to Denver for surgery because the doctors in Albuquerque did not believe they could repair her defect.

We spent a total of five months in the hospital with Hannah before her first birthday. During this time, and up until this past February, Hannah was still receiving help from health programs, including physical therapy, occupational therapy and in-home nurse visits, as well as medical supplies delivered to our home on a pretty regular basis. By the time we moved to Phoenix last year, Hannah had “graduated” from all of the programs, except for physical therapy.

When all was said and done, between the lengthy hospital stays, all the tests, the surgeries, the supplies, etc, we would have had to pay somewhere in the $2 million range. We were fortunate enough to have good health insurance, and we were later able to add Hannah to a Medicaid plan, so a huge portion of this was covered.

I’m not going to go into the whole health care/insurance debate because I don’t want to keep you here all day, but I do want to talk about the help we received from the various therapies Hannah needed.

Hannah received in-home visits from a nurse, a physical therapist and a feeding/occupational therapist through Presbyterian Home Healthcare Services. You don’t realize the value of having someone come to your home for medical care until you really need it, let me tell you. When we first brought Hannah home, nearly three months after she was born, she was on several (six or seven) medications about every four hours, and she was also being fed every four hours through a feeding tube in her stomach, called a gastronomy or g-tube. Taking her out was a huge strain because of all the equipment needed to go anywhere, so having a program like this to relieve some of the stress was tremendously helpful.

For several months we also utilized WIC, which stands for Women, Infants, and Children. This program, which is intended for low-income families, helped cover Hannah’s very expensive formula and several food items for me after we came back from the hospital and were struggling to regain financial stability. One of my colleagues has a fantastic blog about receiving government assistance for his family, which I recommend visiting.

In addition to receiving help once we returned to Albuquerque, we were also provided with assistance from The Children’s Hospital in Denver. It was not only financial (such as meal vouchers for the hospital cafeteria, which was wonderful), but also emotional. Everyone was always willing to help us with anything we needed. We could not have been sent to a better hospital. At one point a staff member recommended a blog site utilized by many hospitals that gives parents the opportunity to keep loved ones informed while they’re away. This saved us from having to make a lot of phone calls while we were gone! I still occasionally update the blog, which is specifically about Hannah’s medical condition and how she is doing (the page name is HannahBananaIngram). Within the blog, I also talked about another place we received assistance: the Ronald McDonald House.

Ronald McDonald House Charities provided us with a place to stay while we were in Denver, which removed a huge burden. Sean and I alternated most nights—one of us would stay with Hannah at the hospital while the other would stay at Ronald McDonald to get a decent night’s sleep. When we weren’t at RMH or in Hannah’s hospital room, we also had the option of staying in a “sleep room,” which was another service for parents provided by the hospital. This way we could sleep comfortably, but we would still be in the hospital. Sean used to say he felt like he was homeless because we would have to get on a waiting list each day for one of these sleep rooms, and we would have to wait to find out where we’d be sleeping that night. Clearly, we have no real concept of what homelessness is really like, but this is the closest we ever came.

Also, if we had not received financial help from friends and family during this time, we would have been homeless when we returned to Albuquerque because we would not have been able to pay our mortgage. That being said, asking for help from loved ones may feel awkward (it was for us), but it may be worth it. In crisis situations, sometimes you have to do things you would normally never do.

Without the in-home programs, the financial assistance and help from our loved ones, we could not have survived this medical crisis. If you ever find yourself in a similar predicament, utilize your resources. There are plenty available.

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One Response to “Crisis brings clarity”

  1. karenselliott November 9, 2010 at 6:29 pm #

    Well done.

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