Update on my Ella...

So Ella is still fighting the ear infection, plus cutting at least 5 teeth, and still running fever from time to time.  She now has developed a rash (see pics below) covering her front and back and now creeping up her neck. Also she is just NOT feeling good, she just wants to lay in daddy or mommy's arms all day long. She will play for short amounts of time, but mostly just wants "up". She is laying down for her 3rd nap of the day right now (her first 2 were 2 hours each) after sleeping 11 hours straight last night. After talking to the pediatrician we have two things to think this rash could be. First off she may be having some sort of allergic reaction to the antibiotic, or she may have something called Roseola (google it). Some people have mentioned to me the possibility that she may just have a virus coming out in the form of a rash, and that her ongoing fever since Sunday may have something to do with it as well. As of right now we are putting a hold on her antibiotic for today and trying some Benadryl to see if it is the antibiotic causing the rash. If the rash continues to spread and does not go away, we will resume the antibiotic and just wait for it to run it's course. Luckily if it does happen to be Roseola, the rash is the last of it and is a sign that it is near the end. Right now it is a lot of if's and I am just ready for Ella to be better!! This has been so hard on her. We also had to take Ella to the ER Tuesday afternoon due to significant drops in her oxygen level. Ella usually sats around 83% with a heart rate around 125,  when she is teething or has an ear infection her oxygen level usually drops to the upper 70s% and her heart rate generally increases to around the mid 150s. The drop in oxygen and the increase in heart rate is due to the pain she endures at that time. As long as the drop in oxygen isn't too significant and doesn't stay in the low 70's or lower for a prolonged period it is fine. Ella's oxygen dropped and was staying in in the low to mid 60's% This is alarming, because it is not supposed to be that low! After calling her cardiologist it was decided that Ella would be better off going to the ER vs. the clinic since it was at such a dangerous level. Jon and I were hesitant to take her in since other then looking blue she was acting fine. We worried that the germs/sicknesses that we would expose her too at the ER would be worse than going to the clinic and risking not having the faster care, but the cardiologist basically said if we didn't take her to the ER we were making the WRONG decision. So we took her in, she was evaluated and then she had another desat episode (her oxygen dropped) while we were with the cardiologist and he was able to see the low numbers and that she looked okay regardless. So he said to continue to monitor her at home and if it continues to happen we may have to intervene, but if it goes away with her ear infection, then it was just from the infection. Yesterday Ella seemed to act like she was starting to feel a bit better, but then later in the evening started running a fever of 101 again and then broke out in the rash, today she has not been feeling well at all again and the rash has worsened and spread up to her head and some of her face. :(  We know that Ella is special and that everything that she experiences will be different then whole heart kiddos, but this is so hard to see. other then one other ear infection back in Aug. she has NEVER been sick. She has never had a runny nose or a cough. She has run a fever only once before with her teething when she cut three molars and her top two at the same time! So this is all very new to us. It reminds me that no matter how careful we are, we can't keep all the germs away from her. It also reminds me to keep up the good but hard work in keeping her as germ free as possible!! As of Nov. 1st, it is officially the DREADED flu season. Starting tomorrow Ella will begin her 2 shots (at one time) every month for the next 6 months. :( they are the shots to help prevent RSV, RSV is extremely dangerous for Ella. The healthcare nurse will come to our house, and Ella will know her face. She will cry and shake with fear of what is coming. I will have to hold her down as she gets a big needle thrust into both thigh muscles. It will be horrible. I am torn sometimes, I hate that my daughter has to have so many medications/ vaccinations... and at the same time I don't really have a choice. Of course I do physically have the choice to say don't touch my child, but for me vaccinations have always been about weighing out the pros/cons of each. I think with a healthy child there are some sicknesses  that may be hard on them, but the chances that they would get them are so small, that the damage that a vaccine can cause may not be worth it. Well with Ella an ear infection put us in the ER... and some of the other sickness would end in death. That out ways the bad in my book. So as hard as it is sometimes to know what to do, I just keep praying and treading to keep my head above the water. Nothing like making choices that can save or take a child's life. Such is parenthood I suppose. The good news is no matter what God is in control, and I am just a small piece of all of this anyway. I am so grateful that Ella's fever showed up the very morning we were going to see her heart friend. I never thought that Ella could be a health hazard to anyone, considering that I have never seen a healthier child. But God was protecting Emma and the signs showed up in time to keep Ella away from Emma and all the other sweet heart babies in the CICU at CMC in Dallas. Just thinking about how close we were to possibly hurting one of them makes me sick at my stomach. Please keep praying for our sweet sunshine in this difficult time. She could really use a break soon, thank you all. 

As for Ella's sweet friend Emma, she is OFF of the ventilator!!! HALLELUJAH! She was not supposed to live through the night a week and a half ago, but she is a rock star and God isn't finished with her yet! And we are so glad! Please keep praying for that sweet spunky darling! 

Ella not feeling like her usual self :(

 Ella's rash. (front)

 (back)