In an attempt to encourage Miss Josie JoJo to take an afternoon snooze, I put her on Mom & Dad's bed and set up my laptop so I could keep her company while blogging. We just returned home from the hospital yesterday afternoon after a successful tonsillectomy and adenoidectomy.
Because of Josie's complicated health history which includes open heart surgery to repair 2 VSD's, chronic lung disease, a G-tube placement and subsequent eating difficulties, what may potentially be an outpatient surgery for some kiddos was a hospital stay for Josie. The biggest factor in determining when she could go home: demonstration of a willingness to eat and drink post-op.
Josie is no stranger to the hospital scene and as a result, Travis and I, have learned a lot about advocating for our little patient. Here are a few tips we can share:
1. Research - Any surgery and hospital stay, no matter how minor, is stressful for both the parent and the child. I have found that the more information I have going into it, the more comfortable I feel about things. I searched web pages and YouTube videos about tonsillectomies. I ordered a children's book about it. I talked to friends whose children had done it before. And I was glad I had because I knew what to expect to some degree. For example, I had a wonderful friend call me the morning of Josie's surgery to warn me that sometimes kids thrash around as the anesthesia wears off and it can be really scary to watch but it's normal. Boy was I glad she told me that: Josie thrashed violently for 2 hours! And it was awful to watch. But it would have been much scarier had my friend not warned me it could happen.
2. All Patients Are Different - Just because two people have the same surgery, it doesn't mean they'll have the same recovery. I talked to a lot of friends whose children had a Tonsillectomy and Adenoidectomy (T&A) prior to Josie's surgery. Some children were miserable for weeks afterwards, refusing to eat, drink, or take medications; while others woke up ravenous, inhaled a plate of spaghetti, and bounced back like nothing ever happened. Josie's recovery has been somewhere in between: She has been eating and drinking soft foods at our request and taking medications but you can tell she's not quite herself. As long as we stay on top of her pain management schedule and administer her medications on time, she doesn't get too uncomfortable/cranky.
3. Ask Questions - Most of Josie's hospitalizations in her infancy took place in a teaching hospital that had a medical school affiliation. It was great because there were tons of fellows, residents, and medical students learning, and the staff physicians were eager to teach and answer questions. And as stated above, the more information you have, the more comfortable you are. So ask the doctors what type of procedure is being performed. Ask about the risks and side effects. Physicians generally don't like "crystal ball" type questions - for example, my favorite question to ask when Josie was g-tube dependent was when she was going to be able to eat orally. No one has those answers. But I found that it helped me to phrase the question like "In your experience with kids her age with Down syndrome, what's the average time frame for a child to use the g-tube? What variables affect a successful transition to oral feeds?" If physicians use a word that you don't understand, ask! If they're describing a condition/procedure you'd like to research further, have them tell you the official "diagnostic term" and write it down so you can Google it and read more about it later. We've found that medical staff appreciate informed parents who are eager to learn all they can about their child's condition.
4. Speak Up! - Travis and I don't have medical degrees but we are the experts when it comes to our children. I believe people who enter the medical profession do so because they genuinely want to help people. However doctors, nurses, respiratory therapists, etc are human, too. They are dealing with a lot of patients with various and complex issues and sometimes things fall through the cracks. That's why, as parents, we must be vigilant and speak up when something doesn't seem right. For example, yesterday, Josie was supposed to receive her pain medication at 11am. By noon, Josie was started to get really irritable and I realized the nurse had never come in the room to give it to her. So I went out in the hall and found her and requested it.
Admittedly, assertiveness comes easily (sometimes a little too easily) to me. I realize this isn't the case for everyone. If you're weary of coming across demanding or disrespectful, perhaps phrasing your concern in the form of a question may help. Say "This doesn't seem to be providing relief for my child; is there an alternative plan of action we can explore?" Or "Do you have any suggestions for how we can help my child ____?" Remind yourself that errors occur in the medical field just like in every other field and it has been proven that parents who advocate for their children receive better medical care.
I'd like to take this time to thank some people whose support was invaluable to us:
1. Mama Hop and Aunt Leanne - They are always there to help when we need an extra set of hands. Because of them, Travis and I could both be with Josie at the hospital and know that our other kiddos back home were receiving tons of love, care, and delicious food!
2. Family & Friends - Stacey, Kristin, Deanna and everyone else who let me inundate them with questions and concerns regarding this surgery. I am so very grateful for your guidance. And to everyone who called and texted to check on our little JoJo, we truly appreciate your support and concern.
3. Blog Friends and InstaFriends - I am so proud to be a part of this fun and supportive social media community. I truly believe that we have a valuable platform to share information, offer support, and change the way the world perceives Down syndrome. Your kind words and prayers mean the world to us.