Wednesday, December 3, 2008

Advantages/Disadvantages to Having a Medically Fragile Child.....

I was recently asked this question in an Email from a mom who is just embarking down a similar road that we have been on. At first I thought, gosh I don't want to tell her the disadvantages of it. I mean, as a new mom of a medically fragile child you would think all you would want to hear are the advantages and positives.

But then I realized this isn't true. What I would have given for the oodles of information out there when I first had Rhett. We did his heart surgery all on our own. We had no support from anyone other than friends and family ~ Who up till this time had never even dealt with a child with a heart defect.

I know I have said this before, but we had no idea that they could leave the chest open after surgery, and that it actually is a pretty common thing that is done to help resolve potential complications. We were just floored. We thought this was the end of the world.

All I had heard about up until this point was all of the stories of how kids had come flying through the surgery and were in and out of the hospital in 4 days after having an open heart procedure done. So in all reality we were ready to be home in 4 days. That's what we prepared for. Come day 4 when Rhett was still on a ventilator, we had a very rude awakening.

So I thought I would share part of this email, and put the advantages and disadvantages that we have seen in our journey thus far.

Advantage ~ We were given the chance to be the parents of an amazing child who has taught us more in his three short years of life, than I had learned in my 30 years of being here.

Disadvantage ~ I have learned more than I ever wanted to know medically wise. I would rather have not taken crash courses in heart defects, oxygen use, apnea monitors, NG/G-tube placement and usage, CPAP machines, pulse ox machines, how to set up feeds/rates, and suctioning, but in the same breath, I wound not change anything about Rhett for the life of me.

Advantage ~ Rhett gives hugs and kisses more freely than anyone I have ever known. There is never a shortage of that type around here!!

Disadvantage ~ Money. It always seems like there is a shortage of it around here.

Advantage ~ Money. We have learned how to save and make things stretch, how to make things work on a super tight budget, and that money is NOT as important as family, values, and friends.

Disadvantage ~ Things can happen health wise out of the blue. I can't tell you how many times I have put Rhett down for a nap and he has woken up extremely ill, enough to warrant a trip to the hospital to be admitted.

Advantage ~ You lean how to make Ramen Noodles 105 different ways to add a twist to the same thing over and over again.

Disadvantage ~ When you go to the hospital your heart drops everytime a monitor goes off. You learn the difference between the "things are okay" alarm, (slow beep) the "things are not okay beep" (high pitched ding ding ding!!!) the vent alarms, which are so loud they make you jump our of your skin every time they go off (beepbeepbeep, beep beep beep, then in a lower pitch beep beep beep,) then repeats again as needed. You also become glued to those same monitors and screens. You can't tear your eyes away from them. It sucks.

Advantage ~ Your hospital stays become shorter over time, because you get to a point where you are home sooner. Why? Because you, unlike most families have become a seasoned veteran in taking care of your child. You can do things at home that most families can't do. You have oxygen, you have all of the monitors, you know your child better than anyone else. Your child also heals so much faster at home, and the Dr's and you both want to be home before you catch any other "cooties" to prolong your hospital stay.

Disadvantage ~ Your child is more than likely going to be a hard poke for an IV. I can't tell you how many times we have had a blood bath in the ER trying to get an IV started. It's not fun, and then once they are started, if something isn't continuously running through it then it's blown, and you have to start all over again. IV's aren't fun for anyone.

Advantage ~ You will learn to love life and live for every moment, every breath, every second of the day. Not just for you medically fragile child, but for anyone you come in contact with. You will make friends with other mom's who have been there and done that, and they will become part of your family. You will turn to them when your extended family doesn't understand what you are going through. You will grow and mature, and look back on all of your experiences as learning ones. You will realize that your child was put here for many reasons, many of them beyond your comprehension ~ Most importantly you will learn that magic, faith, prayers, and miracles will become a huge part of your life. I know magic sounds like an odd word, but that is the best way I can describe Rhett. Everything about him is magical.

Today I am thankful for the magical things in our lives, and that we have the opportunity to believe in ourselves and our children every day.


Anonymous said...

Thank you for your are an inspiration to me.


My name is Sarah said...

This is Joyce. Beautiful post. I just read and absorbed every word. It sure sounds like Rhett is following much of the same path we traveled with our Sarah. Part of me is disappointed that after almost 20 years, we still have kids repeating the same medical challenges. I wish we were a little further along in the research to avoid some of these issues, but then again at least we have come as far as we have. Rhett is such a cutie pie and a strong fighter. I look forward to hearing about his future triumphs.

Kaden and Angel Ava's mommy said...

Well said!!!

As for the ramen. I thought that was pretty hilarious, but of course true. I have a ramen recipe that would make enough to feed you all. I always make this amount and Nate and I can reheat it for about two days (it taste even better lie). The first time I made it for Nate he looked at me like "I'm not eating THAT!!!" I made him taste it and for the longest time he asked for it all of the time.


1 lb ground beef
4 pkgs beef ramen
1 can of corn (drained)
4 cups of water

Brown the ground beef. Add the water, noodles, seasoning from Ramen and corn (drain first). Cook on medium heat stirring occassionally, until water is gone. It doesn't take long at all.

Let me know if you try it and how you like it!!!

Aimee said...

That was such a great post. You're such an amazing person! Oh... and I've got some more stuff for Hunter as well.

Jake & Stephanie Ellinger said...

That's about the best way that anyone has said that. You have a great way with words!

David and 'Becca Black said...

Thanks again, Pam.

Mara said...

Stop by your blog to visit and wanted to say thank you. Thank you for leading me to Francine and Sophia who are wonderful and thank you for having gone through things to maek it easier for those of us coming behind you.Our heart surgery is next week and I am not affraid after meeting so many others who have been there and lived through it ! Thank you

Rebekah said...

Hi there. I don't think I have introduced myself here. My name is Becky and my 13 year old son Ricky has cystic fibrosis and other stuff. I just wanted to thank you for this post because you have said so many of the things that I have thought to myself about this journey that I have never asked to be on.

So thank you for saying all of that. Rooting for you guys over here!