Ivy's cardiology appointment~ Let go and let God!

Pin It It was today and it was GOOD!
Ivy woke up last Wednesday morning a different child than the one the day before. She was doing so fantastic on her new dose of carvedilol and she was so full of life! Then Wednesday morning she woke up sounding like she was aspirating. She had a frothy sound to her breathing and she was very unhappy. Her face was a little puffy and she was not interested in food one bit! (very much NOT her norm)
We watched her closely and this behavior continued throughout the day and the next. By Thursday evening I was very concerned and called her doctor. We spoke on the phone about all her symptoms and he felt comfortable with just having me keep a close watch over her. He said it could be a virus that is just pushing her over the edge due to her hearts state right now, or it could just be side effects to heart failure. Friday we had pictures done in the morning. She was coughing pretty much the whole night but sounded a little less frothy in the morning and she was not as fussy. After pictures she continued to refuse food and she slept the rest of the day. She slept most of the day Saturday as well. She would not eat still and she was getting more and more fussy when awake. I tried to reach the doctor but there was a problem with the phones and I kept getting disconnected. On Sunday morning she woke up at about 9am. She was so upset, nothing and no one could make her happy and she was putting her hand on her chest and saying owie. I tried to call the doctor again but there was still a problem with the lines and I could not get through. Bryan and I knew that we were not going to be at peace until someone told us she was fine. It was so scary to hear her breathing. It was very loud and frothy sounding and she would cry when she coughed. She coughed at least every 5 minutes at this point. So at noon we scooped her up and headed to the ER at Phoenix Childrens. They had no clue what to do with her. They agreed her lungs sounded wet and she looked swollen. They took blood, did the 8 inch Qtip swabs up the nose test. They started an IV. Gave her a high dose of Lasix. Her immediate tests came back negative for infectious disease and viruses. They had us feed her.... I guess when they saw how bony she is they wanted us to prove we feed her??? Anyway, we ordered her food and most of it she refused. Not the daily norm for her but the norm for the past week indeed.
Today when we arrived at the hospital, we were informed that Ivy did indeed test positive for influenza. Her doctor was very upset that we could not get through to him over the weekend. Upset that no one from Ivy's team was there for her when she was at the hospital Sunday. He felt terrible. Upset that the ER never informed them that Ivy tested positive to influenza. These results came in a few days after we were there and we did not get a call, nor did he. Doc said that Influenza would put any child or adult in Ivy's condition in the hospital and on the ventilator. He assured me that she is no ordinary child and it was unexplainable how she shook it all on her own and without hospitalization. I showed him all the gray hairs she gave me over the past week!! Ivy now has her own team of nurses following her too. We have everyones cell phone number and there will never be a need to go to the ER again. They are monitoring her a little more closely due to the state of her heart.


Today, she was coughing less and happy all day! She is eating a little more but by no means are we back to where we were prior to getting sick. She is slowly, throughout just today, getting more energy. She had not moved her body, not even a butt scoot on the floor, since Tuesday. Tonight she was crawling, creeping and so full of life again!




So the great news is that her ECHO revealed that her tricuspid valve leakage has gone down a good amount. Her ejection ratio is now 55. That is amazing for her! This all means that the meds are working and her heart is happy. August 16th we go back for another ECHO. They will then start her on the sildenafil and we should see the pulmonary hypertension go down some. The plan.... Use these medications while Ivy grows and gets stronger for the next 6 months to a year. They upped her to her full dose of carvedilol today and they are adding yet another medication on Monday.


Update: When I put Ivy to bed tonight she was still asking to eat. She had just finished a whole baked potato with 4 spoons of butter in it, a big bowl of noodles and 6 hershey kisses! Yes she is a carboholic!!
She was giggling and singing and playing with the iPad. She was herself!! It has been a very hard 8 days I must say!! But the reward of seeing her so happy tonight makes me forget the whole week!!!!


And top it all off, let me just tell you how good God is when you listen to Him and you step out of your comfort zone!
My son Brady has severe asthma. It is often scary and always comes out of nowhere. He takes advair twice a day. With insurance it costs me 125 dollars a pack. His albueterol is 60 dollars for a single inhaler.
When we started Lexi in speech, since she did not qualify through early intervention due to no other delays, it cost me 80 dollars per session. She went once a week! Our insurance would not cover any of it! ZERO! Can you say Broke?
When God said Ivy Joy was our baby and to hurry and get her, it was a HUGE leap of faith. We have the same insurance as we always have. We were not sure what they were going to cover or not cover. But God said she is waiting for you and I knew the moment I saw her she was my daughter! And so we trusted Him.
Upon landing in the U.S Ivy's cardiac care began. Echo's, Cath's. oxygen, hospital stays, it was one thing after the other from day 1. We had to meet our very large deductible which was not easy to swallow considering we just completed an international adoption and that in itself was tough. But let me tell you what God is doing. Ivy's most expensive medication so far is 24.00 a month. ??? Remember what I pay for Brady's? And her surgeries, one month hospital stay, all these appointments... all covered!!!
And yesterday I got a call from the hospital saying that Ivy qualifies for a special cardiac rehabilitative physical therapy  and it is covered 100%!!!
I do not look forward to busting out that super high deductible  again this January, nor do I know yet where it is coming from. Those Echo's eat up that deductible quite fast. But God said go and we did. God said trust me and we did. God said I will be here with you the whole way and He is!! So come January, He will still be here and we will trust Him still!!!
As For today, I'm Just giving thanks!


Romans 15:13  May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.


Pin It