Our 1st Hospital Stay Since Meningitis
Thursday 8/23, after making it a whole year without needing to be admitted to the hospital for health reasons, Madison was sent to the ER from her pediatricians office after a chest x-ray seemed to show pneumonia in her right lung. While most kids would have been sent home on an antibiotic, Madison’s health history makes things more complicated and it’s usually safer to admit her to the hospital for observation. It sucks, but we’re pretty lucky that we’ve been able to make it an entire year without her suffering from anything serious enough that she required a stay in the hospital.
She seemed to perk up, and we originally thought we would go home just 2 days later on Saturday afternoon. However, Friday night Madison’s breathing became irregular and she wound up needing oxygen support. It got scary real fast. Although even regularly healthy children could wind up needing oxygen support during pneumonia or respiratory illnesses, we always have a fear of things snowballing out of control when it comes to Maddie’s health. Because of the amount of oxygen support she needed, we were also transferred from the Pediatric floor, to the ICU.
Now don’t get me wrong, the ICU nurses and doctors are INCREDIBLE. They literally saved her life once. We know all of them very well. Consider most of them friends. And we know they will take the best care of her, buuuut typically we try to avoid staying on the PICU floor as much as possible. It really triggers some major PTSD in us. Children are monitored more closely on the ICU floor, their nurse pretty much sits right outside & has a window allowing them to see inside the room at all times. The PICU is loud with monitors constantly beeping, it’s just all around a more stressful floor with less privacy. But, if you want your kid to get that extra attention just in case, it is definitely the place you want to be! Crazy thing was, we wound up in the exact same room we lived in for a month watching her fight the meningitis. I definitely had a minor anxiety attack upon arrival. After we were settled even all of the nurses couldn’t believe we were back in that room. It was deja vu for everyone.
Anyway, Madison’s breathing seemed to settle with the oxygen, and all of her other vitals remained stable. It was decided that the original diagnosis of pneumonia actually no longer fit her symptoms, and that it seemed like she actually had something viral going on. As most of you I’m sure know, there are no antibiotics for viral infections, you really just need to let it run its course. Her viral panel wound up coming back positive for Rhinovirus, which caused Bronchiolitis, a common lung infection causing inflammation in the bronchioles. And so we waited. Each passing day we slowly weaned her oxygen support and let her rest. In all honesty, it’s been a boring stay, but we’re always happy to have Madison be the low key patient on the floor, knowing all to well what it feels like to have nurses in and out constantly adjusting IVs and oxygen.
Madison seemed to improve each day, just slowly. She tends to take her sweet time when it comes to anything. Anytime we’re given a discharge date, we always add at least a day to that, because we simply know our girl. After a week in the PICU, we were transferred back to the Peds floor, as her oxygen support was low enough that she no longer needed the extra eyes on her. This weekend we finally weaned the last little bit of oxygen and got her eating by mouth again. Yes, she wound up needing an NG tube for food during this hospital stay. Because she was on oxygen support & already struggling to breathe, it was less stressful to her body to tube feed her. It can be hard for a child to eat safely when their little bodies are already working extra hard just to breathe. The last two days we saw her feisty personality come back (as in, she was yelling at every nurse who touched her lol), oxygen was turned off, and the NG tube was pulled.
Our “2 day you’re here for pneumonia antibiotics course” turned into an 11 day stay, but we’re happy to say we survived her first illness since meningitis! Truth be told, we didn’t know what to expect when Madison got sick. When you’re told your child could be at a greater risk for death anytime she falls ill, it’s a really scary thing to think about. But in true Maddie fashion, she remained strong. She didn’t need to be intubated again (thank GOD!), and all of her other vitals and electrolytes remained stable. Aside from the night her breathing became irregular, it was a pretty uneventful stay.
As much as I wish I could keep her from getting sick for the rest of her life to keep her out of the hospital as much as possible, I know this won’t be our last time here. It’s definitely comforting to us though to know she can make it. She can get sick, and she can beat it without things getting too scary. I’m so proud of her. And being that we were still in the hospital at this time last year, I’m thankful we’ll get to spend the last little bit of this Labor Day Weekend at home! Hope all of you enjoy the long weekend too!
September 2, 2018
Thank you for the courage and the strength to write this BLOG. I am so glad Maddie is feeling better and she is back home. Enjoy the rest of your holiday weekend and hopefully to see you all soon. Love The Pines Family.
September 2, 2018
Thanks Aunt Gerry! Love you guys!
September 2, 2018
Glad Maddie’s feeling better and that you’ll be home soon!
September 3, 2018
Hi…thank you for sharing your story. I know the journey to well! I have a 27 year old son with brain injury and have experienced the events you spoke of so far. Hang in there and trust in God…everything is for a reason…All the best, Deb
September 3, 2018
Thank you Deb! It’s so nice to connect with others who have been through this. Madison has opened my eyes up to so much in such a short time, our kids are truly incredible. God bless & thanks for sharing in our journey! ❤️