We had our follow-up appointment with cardiology on Friday and it was the best one yet. Probably because we had no tests. No x-ray, no EKG, no blood test, no echo. Lucy cried only once when I laid her on the scale to get weighed. She is almost fourteen pounds. The remainder of the appointment she smiled and played. I think it may have been the first time Dr. Husayni has seen Lucy happy. He listened to her and said she sounds clear. I asked about a couple of thing at the appointment. The first was removing the 3 am feeding. We will have an in home nutrition evaluation before we are able to make any changes. We will endure a little less sleep for another month or so and hope it can be stopped in January. The second was removal of medication. Lucy is currently on seven medications, potassium and a vitamin. I would love to get this down to two medications and her vitamin. The first ones to go would be the diuretics and potassium. However, since we have only been back on regular formula for a little over two weeks we will remain on the them until our next followup in a month. Then possibly the reflux medications. The throwing up has completely stopped, so we will keep the dosing the same and as she gains weight she will ween herself. The last question was oxygen. Can we remove it already? Wait for it..........
A week before Christmas we get to take Lucy off oxygen.
Next Friday we will remove Lucy from oxygen. I am excited and terrified all at once. After a week off oxygen we will head back to the hospital for an x-ray to ensure there is no effusion. This is huge. Her saturation's have been in the nineties since the ballooning of her aorta and we have had her on only an eighth of liter. Since the appointment I have moved her down to a sixteenth of a liter. As long as her saturation's stay in the low eighties and above we are okay off oxygen. I think it will be a good two months before we travel without our oxygen tank....but at least she doesn't have to be connected to it!
Then we can focus on removing that last tube from her face. Unfortunately the G-tube surgery has been postponed due to our extended hospital stay and unexpected surgery. We will start talking about surgery again at our next appointment in January.
In the last ten months I have asked for many prayer requests. Sometimes I think more than in my previous thirty six years. I know that the answer to my prayers is not always yes, sometimes it is no and sometimes it is not now. I mean Lucy came after seven years of praying. But yet again we see another prayer answered (and might I add quicker than I anticipated). When Lucy came home from the hospital, the condo was perfect for us, but as the months have progressed, it seems to be shrinking by the day! At the beginning of October we listed the condo, we had a couple showings and were preparing to remove the listing as we approached the holidays. Then we got re-admitted and I swear everything falls by the wayside. Well during that stay we received an offer and accepted. Since then we have been feverishly looking at houses so that we will have a place to live. Fifteen houses in one week and we found a house that we think will suit our needs for the future. So once again, we ask for prayers that the entire process: selling and buying, go as smoothly as possible.
And of course if anyone has any furniture they are getting rid of let us know. If we are need, we will gladly take it off your hands.
