Sorry I didn’t write yesterday, but we got home yesterday afternoon. They provided us with some oxygen for emergencies (which we had been pushing our insurance for for months) which made us much more comfortable. Evie is worn out, but doing well. Overall this was an extremely mild case of RSV which we are so grateful for. It could have been so much worse! Thank you everyone for your prayers during this time!
Evie is doing pretty well, but struggles to maintain her oxygen levels all the time, especially while sleeping. They’d like her to stay another night to make sure she continues to get better and not worse. She should be discharged in the morning,
Had my first ambulance ride. Evie had fun chewing on the nose of a little fox the EMTs gave her. Admitted at Blank on the peds floor. She’s acting like she’s not even sick. What a goof. Almost feeling silly even being here. Almost.
We received some of the results from the three tests Evie had last Friday. We’re still awaiting a few things as well.
First off, the MRI. When Evie was first in the NICU, the doctors all took note of the rather large birthmark on her face and explained that sometimes there can be brain malformations associated with this type of birthmark. When they did the CT scan to check her choanal atresia they also checked her brain and we were told everything was normal. A few weeks ago we had a follow up appointment with the pediatric neurologist to talk about issues with CHARGE, or so I thought. He explained that a CT scan cannot rule out this other syndrome that they had suspected and she would need an MRI. Honestly, I felt like I had just been run over by a train. I was terrified of this other syndrome adding seizures to her list of challenges, but praise the Lord! She does NOT have an additional syndrome! The neurologist said her brain scan came back normal! We are extremely relieved, as you can imagine!
We’re still awaiting a few other things from the MRI, but just to help us plan therapies and understand her a little better.
Next, the CT scan. We had suspected a few things with Evie and wanted to figure out exactly what we were dealing with. Her CT scan actually came back completely normal as well! Praise the Lord there are no additional problems.
Lastly, the BAER test which is a hearing test. We had suspected some slight hearing loss in Evie’s left ear, but knew she could hear. We were surprised to learn that Evie has mild to moderate hearing loss on her right ear and severe hearing loss in her left ear. The audiologists suspect that her left ear loss may be compounded by fluid, so with time that may improve a little bit. It is fairly common for CHARGErs to have mixed hearing loss and for their hearing to worsen or improve depending on the amount of fluid present. Since Evie’s nasal passages are blocked it is difficult for the fluid to drain, but as she grows and we open her nose, that may help. We will be going in to get hearing aids fitted in a few weeks. We are glad to be finding out now when she is so young so that hopefully speech can develop properly. We are definitely saddened by this news. We wish Evie didn’t have another struggle, but we are so grateful to live in a day and age when there are so many possibilities for her in the future. Here is a great chart to help you better understand her hearing loss.
I wanted to add that her new gtube is working well, too! It’s nice to not have it leaking all the time! Her little tummy is still fairly sore though and she’s still not quite herself since Friday.
Please pray as Evie continues to heal up and get back to her usual happy self! Please pray that the MRI allows the audiologist to get a better picture of the structure of Evie’s ears and develop a plan to help her hear at her best! And please pray that when we do get Evie’s hearing aids that she will actually leave them on (we’re not so hopeful for our little girl who looooves to yank her feeding line out whenever she gets fed. She’s trouble)!
Thank you for your prayers! God definitely answered them with all of this good news!