Consider Pure Joy

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. James 1: 2-3

Our Experience and Advice Part 1

on October 7, 2014

2014-08-23 10.22.35

Reese McClain in one of my favorite pictures ever. 

From the desk of Kyle

When we started this blog we had two purposes. The first was to keep up with family and friends about our journey with Reese McClain. But the second more important purpose was to help other families as they discover and research their new journey with a special needs child. These days one of the first things any parent in our generation or younger does is to Google for answers when it comes to their children. Having a medically fragile child with special needs, causes you to stay up for all hours of the night researching new studies, new blogs, and reading complex medical journals. It can sometimes be very overwhelming and downright scary.

When we first discovered Reese McClain’s had MECP2 Duplication Syndrome, we searched the internet for answers. We found some medical research, a few good blogs, and a very helpful facebook group. We’ve learned a lot these past 2+ years and we’re still learning every single day. We thought we would give our experience with a special needs and medically fragile child. This advice is from our experiences with our journey and these opinions are our own. Our experiences might be very different from yours, so please use our experience as a tool, not fact. Please comment below with any questions you might have.

(We also understand that we have many international families that discover this blog and we’d like for them to understand that experiences can be very different from country to country. This is ours in the United States.)

We’d like to start with the medical side of things. This is an area where I have surprised myself with overcoming my control freak fears of hospitals, needles, and doctors. A while back Elizabeth and I were becoming overwhelmed with Reese’s situation and we sat down and decided that we needed to divide things up. I’ll be honest in saying that I was putting too much responsibility on my wife and not sharing the load. So we made the decision that she would handle therapies and I would handle medical. This has been by far one of the best decisions we’ve made when it comes to Reese. Elizabeth schedules and fights for Reese on the therapy side of things, she talks with therapists, follows up with that type of paperwork, and keeps the calendar for therapy. I’m very blessed to work for a company that is flexible with family life and lets me take care of Reese when I need to. I’m at almost all of her doctors visits and tests and I’m the one that most often takes her to the ER. Reese McClain and I are regular visitors at our local children’s hospital ER and we know almost every nurse and doctor by sight and they know us. We have found that the medical side suits me. I can handle doctors and nurses and I’ve learned to speak the language. Elizabeth has excelled in keeping all of Reese’s therapies organized and fighting the bureaucracy to get more services. This has also worked well for our marriage and our mental health in dealing with all of Reese’s issues. We cannot recommend this strategy enough.

Our experience with Doctors have been amazing.They are saints, and they have blessed our family in so many ways. Yet doctors are not God. They are humans, they make mistakes, they don’t know everything, and they must be questioned. Reese has some amazing specialists that care for her and some of them have been with us from the beginning of this journey. A couple of her doctors are considered the best in their field and are nationally and internationally known. But through this journey we have had doctors who weren’t so great, we weren’t comfortable with, and we’ve had them replaced. This might sound like a tough thing to do but we will always do what’s best for our daughter. A doctors feelings and ego are none of my concern. I’m focused on Reese and her care, not a doctor’s pride. If you don’t feel comfortable with a doctor, find another one, even if you have to travel. Nothing is impossible when it comes to caring for your child.

During the cold and flu season we occasionally have to stay for a couple of  overnight visits at the children’s hospital so Reese can get her lungs cleared. It’s a process we’re familiar with but it’s not something we ever look forward too. When you are admitted to the hospital it’s important to learn the names of doctors and who ranks where. There is a pecking order in American hospitals for doctors and it goes something like this. Specialist doctors are the highest we will ever see. These are neurologists, pulmonologists, and cardiologists etc. If Reese is hospitalized and any of her specialists are consulted, they can call the shots. Most of the time we do not see these specialists and we only see what’s called the Attending Doctor. This is the doctor who is legally responsible for Reese’s care while in the hospital. The attending supervises resident doctors, med students, nurse practitioners and registered nurses. The attending is the one who writes all the orders for medicines and treatments and has the final say when you are discharged. The attending is the one can make things happen.

Back in 2012, Reese was on her 3rd visit to the hospital in less than 4 weeks. We had a bad experience in the ER and had been getting the run around for hours by different people as to what was going to happen with Reese’s care. I had to work that morning so my mom was staying with Reese and I had her put me on speaker phone with the attending doctor when she made her rounds. I was not happy and made my displeasure known. Over the course of the rest of that week, Reese was a top priority for a large team of doctors and the week ended with what’s called a care conference. This was 14 people made up of 8 doctors, 3 nurses, and 3 social workers who all got in a room with me to discuss keeping Reese out of the hospital. None of this happened without that attending doctor pushing for the care conference. She got things done and we are forever grateful for her that week.

After attending doctors there are residents. When the attending doc does rotations they bring a crowd with them. In this crowd is usually a nurse or two, medical students, and first, second, and third year residents. A resident is one who has received the title of doctor for finishing medical school but is now in the stages of medical training. You will see the med students and first year residents (who are sometimes called interns) more than the other doctors. Always ask when they are in the room who is what. Third year residents are just one rung below the attending doctor and they can also make things happen. They are a great resource because they are usually close by if you need them. Also, just like most things in life, it’s all about relationships. We’ve gone back to the hospital a couple of years later and our third year resident was a first year resident when she first saw Reese. She loved us and took great care of us. Getting to know the doctors, asking who they are and learning about them is invaluable to your child’s care while in the hospital. Write down names if you have to, and make the effort to get to know the hospital staff. You never know when that personal relationship might come in handy.

The backbone of any hospital is the nursing staff they are the people you have contact with the most throughout your stay in the hospital. I would say that about 98% of the time we have great experiences with nurses. They’re rockstars. But we have had that 2% who have a bad attitude, poor communication skills, or they just aren’t good at what they do. Nurses are the same as doctors, they’re saints and they are a blessing. Yet they sometimes are not up to the standards you hold for your child and it’s ok to ask for a different one. We’ve done this before and while it’s awkward, it has been necessary. Now granted we’re not picky, we’ve only asked twice out of the over 100 plus nurses we’ve had to be replaced. Both times were because of incompetence and not because of personality. You have to learn to deal with different personalities, but I will not compromise on my daughter’s care and you shouldn’t either. It’s a decision about what’s best for your child and you must get over everything else and focus on that.

Finally in this very long essay, I leave you with some quick tips we’ve learned. Not all might apply to your situation, but they’re what we’ve experience.

  • be nice and be thankful. Kindness goes a long away with doctors and nurses.
  • take breaks when you’re in the hospital. Go out and get a good meal, go home for a long nap. Do not wear yourself out by never leaving the hospital
  • always question the nurses about what medicine they are about to administer to your child, no matter if it’s by IV or oral. Do not accept that they have the correct medicine the doctor ordered. If you have a concern, ask to see the Doctor again before the medicine is administered.
  • If your child frequents the hospital often, make sure to keep good records of all visits. I actually scan Reese’s medical records once a year. I also take pictures of all of her medicines and put all pictures and scanned records in a program called Evernote. It has an app for every kind of smartphone and computer. Great resource

I could write even more about this topic but I hope I’ve helped this long overview. Being a parent of a medically fragile child is hard. The sacrifices you make and the journey you take are at times hard to swallow. It’s not easy to quarantine your child and home for a weeks at time and not venture out. It’s also not fun to make an ER visit for the 4th time in 7 days. Watching your child lie sick in a hospital bed is one of the most helpless times of your life. Yet God is there with you every step of the way. He has a very big story to tell and you and your child are part of that story. Stay faithful and give all the glory to God.

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.  – 2 Corinthians 4:16-18

This is a two part post, next week Elizabeth will write about navigating the world of therapies and early intervention. She’s one of the best at it and our precious Reese McClain is blessed to call Elizabeth her mommy.

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One response to “Our Experience and Advice Part 1

  1. Erica mercado says:

    God bless us all who are suffering with Mecp2. Although are girls are better off than most I still feel like my happiness has been sucked out of me.

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