Monday, October 14, 2019

Unexpected Hospital Stay

Well I say "unexpected" because it wasn't planned but the reality is, we always know a hospital stay is a realistic possibility at any point.
It started Wednesday, we were at church and when Ella came out of class I immediately knew something was off. She looked like she felt sick, her eyes were heavy, her skin was pale, she had a slight bluish tint. I asked her if she was okay and she said she didn't feel well at all. I assumed she had been too active in class because I wasn't there to remind her to take breaks and when she overdoes it she gets these same symptoms (It's not uncommon for her to get bluish/pale and vomit after playing too much), but she assured me that she hadn't been running more than usual. We got her in the car and when we got home we took her temperature and she had a low grade fever. This low grade fever continued each day but still no other symptoms besides a mild scratchy throat until Saturday. On Saturday we heard her cough once or twice and it sounded a bit congested. Jon went to work and Ella and I were home resting. We had been monitoring her sats at home to make sure everything looked okay but by late afternoon I noticed her looking much more blue than she had been so I hooked her up to the pulse ox monitor and her heart rate was a bit elevated and her oxygen was about 15 points lower than her base line (and her base line is already lower than a healthy person's). I called Jon home from work and contacted her Cardiologist and then the Cardiac on call doctor and they told us to bring her to the hospital ER just to be safe. We drove up there and they were ready for us (because cardiology had called ahead to let them know we were coming in) They got her hooked up to the monitors and then started her on some oxygen to bring it up to her baseline. They had to bump her up to 1 1/2 liters of oxygen before she started sitting where she needed to be oxygen wise. They started an IV (poor baby was SO brave even though it was terrible). Then they admitted us to the cardiac floor for overnight observation. Over the night and through the next day Ella continued to desat (drop her oxygen level) even while wearing her oxygen but only when she would get up out of bed. They ran some blood, and some nose swabs and a chest x-ray, the results showed that she was positive for two viruses. Then they did and Echocardiogram just to make sure her heart function hasn't decreased. Praise the Lord her heart function looked good!!! While doing her echo her cardiologist ordered them to get some pictures of her heart while she was standing (Echos are typically done while a patient is laying down) to try to find out why she was desatting with position change. When Ella had her most recent open heart surgery (the Fontan) she had a fenestration put in (which basically means her surgeon created a hole in her heart to help take some of the pressure off of her lungs. This helps the body last longer with the Fontan circulation but it is somewhat controversial. Thankfully for us, her cardiologists agree that it is best for her) Turns out that this virus or viruses have created some extra strain on her lungs and her body is using that fenestration a lot right now, which means it is doing it's job but this also means her oxygen will most likely be lower for the remainder of this illness. Ella's lungs are extra weak due to the damage done from poor blood flow before her surgeries so viruses based in the lungs hit her especially hard. Which is why we are so vigilant about trying to keep her well!! Side note, if you see us out and about and you or someone in your family (or someone you have been around) is sick (even a little), please love us by keeping a safe space between us! I can't begin to express how much anxiety it causes knowing how something so "small" to someone else's immune system can be so BIG to my sweet girl or anyone who is immune compromised for that matter. Ella was sick all summer and has already been sick a few times this fall. We are trying so hard not to isolate her and become little hermits who never leave home, but I have to admit hazmat suits sound pretty dang enticing after watching my baby suffer so much due to germs lately. Please just stay home if you are sick, wash your hands well and often, cover your cough with your arm, and always do your best to protect the most vulnerable among you! Please! I tend to get a bit passionate about germs because they hurt us so much, but back to Ella's hospital stay. Once we got the all clear for her heart function, we got the tests that show what viruses she is dealing with, and found out why she was desatting, they let us discharge her and bring her home! The virus is also causing her eyes to hurt so they had us see the ophthalmologist before we were officially discharged and they checked her eyes thoroughly (poor babe had to have them dilated). He said her eyes look okay and that this isn't uncommon with viral illnesses, he did however update her glasses prescription (due to a stigmatism it had changed). We just got home a bit ago and it will be a little tough waiting this thing out. We will have to bring her back to the hospital if it starts to decline rapidly, so please pray that she heals quickly! The doctor said best case scenario it would probably be at least another week of desatting significantly when she walks. Right now she has a pretty nasty sounding cough that's making us nervous and this virus can lead to pneumonia and some other things like that so please pray specifically against additional infection!
Also for those who have followed Ella's Journey for several years may remember that we have been trying for years to figure out some of her low oxygen issues. We've seen multiple doctors and her case has been seen by multiple hospitals but ultimately we've had no answers. After visiting with another doctor we had some possible confirmations for what Jon and I had been thinking might be the root cause. Well, during this hospital stay the attending cardiologist on the floor was a specialist in this type of problem and he confirmed that while we can't officially diagnose her while she's sick (because her desatting/elevated heart rate are definitely more prominent right now) he thinks we are finally on the right track to figuring some of this out. We are going to explore this more next month with her cardiologist to hopefully get more answers. We would be so grateful for your prayers over this process as well! Testing is complicated and there aren't a lot of clear answers.

Thanks for always praying for and loving our little family! It means so much to us!