*Writers warning: I apologize in advance for misspelling or bad grammar. I’m going on very little sleep and a whole lot of stress!!*
Yesterday I had a doctors apt in San Deigo. We almost didn’t bring Jana but she woke up seeming great. No fever, little coughing…we were happy 😊. During my apt we noticed her breathing seemed a little odd…by the time we got her in the car she seemed to have a fever. We talked it over and figured Children’s was right here. She wasn’t getting any better and they had already seen her for all her specialist.
When they got her in her tempature was 104 degrees. She was struggling to breath through the coughing and slightly dehydrated. After x-rays, they noticed she had the beginning stages of phenomena. She needed to be admitted at least overnight.
She needed an IV. I knew it would sucks…but I wasn’t prepared for this. Due to her dehydration it made it close to impossible for them to do it. After 4 tries…Yes 4 times of them poking her…her screaming at the top of her lungs…they got it. It probably killed the nurses as much as it did us to hear her. They were so upset they had to do that. I knew she absolutely needed it. But how do you explain that to a 7 month old??
That was bad…but not the worst thing. Her nose is so congested they had to suction her nose out with a machine. They do it twice. Once just a frontal nose suction. Almost like using a NoseFrida. The second part is actually sticking a small tube down each nostril and her throat. I am telling you, I’ve never heard any of my kids cry like that! It was so heartbreaking to hear. It helped so much…but so hard to watch. They’ve done that twice now.
She was up last night till around 2:30 screaming. We couldn’t do anything to calm her down. As soon as she would start to drift off she would struggle to breath and scream again. It was torture. I couldn’t snuggle with her because she couldn’t breath right. She could roll like she normally does because of the IV on her arm. She couldn’t really suck anything so that meant no bottle, no binkie, no hands. Finally the nurse wrapped her up super tight and caused her to stop fighting. She struggled for another 30 min then crashed. She’s woken up about 4 times since then. But almost immediately fell back asleep.
She’s struggling. Juan is struggling. I’m barely holding on. This has been the hardest thing I’ve faced. Being with Jaylen during her Anaphylaxic shock, her appendectomy…stitches for both boys. Nothing has compared to watching our tiny baby scream and freak out. I would do anything to remove this from her. To switch places, to have her back to her beautiful happy self.
Doctors are thinking it will be another night or two. She needs to be able to be off oxygen, not needing her nose suctioned and eating regularly for 8-12 hours. When all three are cleared we are home.
I know I’ve asked you to pray for our family in the past…but now we desperately need it. Please pray that Jana keeps fighting this and gets better. That the doctors and nurses that are caring for her are doing everything they need. Pray for Juan and I as we get very little sleep and have to watch this all helplessly. We want our Jana back and healthy. I can’t wait to hear her adorable belly laughs and watch her attempt to crawl. To snuggle her in my arms as she slowly drifts to sleep.