They advised we see the cardiologist right away as it appeared advanced heart failure had to be the cause of her continued cough and now what was becoming a big hard belly!
I was scared and I was not ready to take the chance of her ending up stuck in the wrong hospital so I began packing our things in preparation for a trip to California where she could be seen at Lucile Packard. I called her cardiologist and we went through everything. Where this began, where it had progressed and where she was now. What we had tried, what worked and what was not working. Clearly, breathing treatments were not offering her any relief and she had finished the steroids and the antibiotics. He said that yes, this flu had been too much for her little heart and taking the sildenofil away at just about the same time... all a whole lot for her just recovering heart to handle. But in the mix of it, he really thought that a sinus infection had set in as well, and was the cause of her continuing cough. He told me to use my own judgement and if I felt that she needed to be back on the Sildenofil, to go ahead and do it. He had me call the pediatrician back and have her put Ivy on 20 days of a stronger antibiotic. I called. I spoke with the nurse practitioner we had seen that morning. She disagreed with my cardiologist... but said ok. She agreed to call in the prescription however she never did. I tried all weekend to pick it up but it was never called in. Friday afternoon, I decided it was time to start the Sildenofil. I was ready to do it a week ago, I just needed permission. I also gave her some rescue diuretics. We started seeing results right away!
This morning we saw the pulmonologist. He agreed that she needed her Sildenofil, her heart and lungs were not ready to handle all of this sickness and he also felt that she had sinusitis! We had 3 X-rays done to rule everything out and he called me an hour later to tell me she indeed did have raging sinusitis and he would be putting her on 20 days of a strong antibiotic! Oh yes, my cardiologist is a smart guy! I had Ivy in the pediatricians office how many times? Anyway, the only thing that matters now is that she is getting better every day.
By Sunday she was starting to stand and take a few steps and her spirits were way up! She hung out with one of her buddies while we went to church on Sunday. She made her first trip to Target in a very long time... Ivy is Target obsessed! By Sunday afternoon she had eaten more than her weight in veggies, eggs, shrimp, mushrooms, potatoes! Later that afternoon she surprised us all by asking to go for a little swim! She got in the pool and floated around for about 25 minutes. We were feeling very relieved and very confident that putting her back on Sildenofil was the right thing to do. Today she is walking, eating non stop and very happy! She has started her new antibiotic and we were told that this cough should be a thing of the past in 7-10 days. Her belly looks a lot better tonight and her face is no longer sunk in. I think her weight loss is nothing to worry about. The way she is eating she has probably already gained it all back!