Ethan was admitted to Children's Hospital on Tuesday evening after he wasn't eating, extremely tired, difficult to arouse, and rapid breathing.
We were at the cardiologists office on Monday and he had a 4oz weight loss in 9 days. They started having us add a different type of formula to the breast milk and would followup in a couple days. Well I just did not feel comfortable with how he was doing on Tuesday so I made the cal to his cardiologist and they admitted him to Children's.
Everyone in our house has been sick with this nasty cold. I thought Ethan and I were out of the clear, then it hit me like a ton of bricks nearly a week ago. They did a viral screen and it came back positive for the rhinovirus aka "common cold". They're saying Ethan has suffered a hit from both sides, his heart is getting so weak that he needs surgery soon and the cold has unfortunately set us back for the surgery. It's everything we have tried to do to prevent him from getting sick, staying housebound and limiting visitors... I'm just thankful he did not test positive for RSV, that would definitely postpone surgery for 6 weeks. They were supposed to present his case to the surgical teams today, but since he is sick this is on hold...
They have made multiple adjustments to his medications for his heart. He is now on lasix 4 times a days (to decrease fluid around his heart and lungs), digoxin still twice a day (decrease workload on the heart), added enalapril twice a day (decrease workload on the heart, and zantac twice a day (to prevent reflux).
He does have a temporary feeding tube into his nose. We offer him a bottle and what he doesn't take we give the rest down his tube. He has been eating more, has finished a couple bottles. He still is so fatigued and that is related to his heart and I'm sure from not feeling well. They are planning of having Matt and I do the feedings, put down the tube, and care of feeding tube this weekend so hopefully we can take him home early next week.
I'm so excited Eli is coming up this evening. I cannot wait to see him!!!!! I have been staying at the Ronald McDonald house across the street, so they will get to stay with me this weekend. Also I am asking if you can collect the "pop tabs" off the cans, the Ronald McDonald house takes these for donations. The money is used to pay for electric, gas, water, food, ect. Please contact me if you're interested!!!
He seems to be tolerating all of this. He is doing nearly 100% better in my eyes since we were admitted. He sleeps a lot of the morning and afternoon, but he sure get a party going on in here in the evenings. The nurse was telling me last night they had to draw who got Ethan because they all wanted him. Makes me feel so good that when I'm not here he is loved and well taken care of.
Thank you all so much for your continued support, thoughts, and prayers! We love you all :)
I know you've been so careful to try to keep him healthy all this time. The stress of waiting on the surgery date is enough to way you down at times. Praying for him to get over this cold soon and his new meds to buy some extra time to get him healthy again and gain some weight so he can have his surgery and you can move on with life. It will be over before you know it, and you will look back with relief and a weight will be lifted. Until then, try to take care of him and yourself and realize it's in God's hands. We can't control out situations, only our response to out situations.
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