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For the past week I have only been home once. I have been living in the hospital and partially at the Ronald McDonald House nearby. Hospital living is not what I expected. Of course no one wants to have to stay at a hospital, but looking back I thought that getting the help we needed through staying at a hospital, would be great.
Don’t get me wrong, I am glad we are getting help, but the part about living here and dealing with the every day unknowns is the hardest part for me.
I sleep in a chair every night that folds out into some kind of “bed.” Let me just tell you, this thing is as hard as a rock. Between the nurses coming in every hour or so, the beeping of the monitors and the slamming of doors, sleep here is almost impossible.
Every morning a floor doctor is supposed to come in and talk to us about the plan of care for the day. Sometimes that happens, sometimes that doesn’t. I just get dressed and hope that it does. Every few hours a tech comes in to do weight and temperature checks. A lady named “Nettie” has been our tech for awhile now and she is the sweetest little woman you will ever meet.
My daughter is continuously hooked up to about ten different cords. One being an IV, two being a feeding tube, and several more monitoring everything the hospital can possibly think of. It’s hard to move her from place to place or even play with her without a cord coming apart, or ripping off the tape from her little body. Let’s just say that with all these cords, diaper changes are quite the work out.
After 4 days here, we finally asked if it was okay to give my daughter a bath since no one had told us otherwise. Thankfully, we were allowed to give her a sponge bath around every cord attached to her body.
In preparation for each test being ran (MRI, endoscopy, etc.), food is stopped anywhere from what they tell us is 4-6 hours before. The time they tell you a procedure will be done, is never the time it is actually done. In the end, both times they stopped her food came to at least 12 hours without food. That makes an entire 24 hour period in two days that she didn’t get any food.
We have learned that you never believe what anyone says, even the doctors because no one communicates here at the hospital and for the most part they are wrong. One person says you will go home tomorrow, another says after the weekend, another says probably today. I constantly have to make sure to keep track of everything, every choking/aspirating episode and that every medicine is given on time. I learned this after the one day no one knew if my daughter had been given her new medicine or not and no one could agree on what actually happened. Turns out, I was right.
One of the worst things about hospital living, is not being able to see my son. Due to flu season, no one under age 12 is allowed in the hospital. The only time I have ever been away from my son in his almost four years is when my husband and I went on a post-deployment vacation. Thankfully, the Ronald McDonald house has wonderful facilities: a playground and a playroom where I can see him and play with him. Since we live about 45 minutes away from the Children’s Hospital, he has only been able to come up once, but hopefully that will change in the coming days…
On top of a bad cold, my stomach has been sick from stress, nervousness, and from the constant barrage of fast food I have had over the past month or so with all the appointments leading up to the hospital visits and during. I am so thankful for the meals people have been making, and for the meals donated to the Ronald McDonald House.
While hospital living is not what I expected, we are taking control of our daughter’s health and taking it one day at a time. Sometimes I wonder why God chose us for this life. Why God thought it best to make us parents of two special needs children. We are not supposed to question God, but at times I do. While I love my kids and would never change having them even knowing everything I know now, there are some things I would change.
I would change the hurt I see, the struggles I see. I would change every hardship for them, every sickness taken on as my own, and every need I would want met. I would do anything to see them not have to struggle with things that are supposed to come naturally like eating, talking, and making friends.
I know that through it all I am blessed. I may spend my days doing hours of therapy with my kids, or hours working on teaching them how to eat. I may not get to go to parties, hang out with friends, get manicures and pedicures, or even have time to work out like I would like, but I am still blessed. I am blessed to be their mom. And nothing, NOTHING, will ever change that.
If you are just now reading this and trying to figure out what’s going on, catch up with it all here: