Long overdue

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I have not updated on here in quiet some time. I've had a lot of emotions running 90 since Andrew's last major hospital stay. Since Andrew came home from the biggest scare of our lives my life has forever changed.

I will say that since my son was on death's door in January that God's been working on me in so any ways. You wouldn't believe the change that's coming from me since then. When we brought him home I felt true fear for weeks and still do at times. Sleeping next to a sweet baby that can change with the drop of a hat in less than 24 hours is terrifying. I have adjusted to very little sleep and to devoting every waking minute to my son's needs, and couldn't imagine my life any different now. I think what's so scary is that fear is always going to be in the back of my mind. I find myself questioning what his future would be like or if he will still be with me then. Only God knows and I hope we get many more years with him.

Just a few weeks ago Andrew had gotten sick with a tummy virus again (that's what landed us in the hospital before he went on the transplant list) and we were terrified. I was up day and night checking vitals, maintaining fluids and praying like crazy. I maintained him for a day and ended up having to take him in. He started throwing up and got strangled to where he couldn't breathe. He started turning very blue and his sats just bottomed to 60 and we completely lost it. Shaun panicked and handed him to me and I began working as fast as I could to clear his airway. Every time he throws up I have to manually clear his airway for him or he can't breathe. He was fighting a very high temperature and his heart rate kept creeping higher and higher and I was afraid that we were going back down this same path again. Luckily our last hospitalization was only 3 days.

I don't think the fear ever leaves. Good days or bad, it's always there lurking. We're lucky that Andrew has been having more good days then bad lately. We are constantly struggling with his weight gain and weight loss. I have a feeling that gtube surgery is in his very near future. We will do whatever we need to get him healthy and strong as can be, but I was hoping to keep him home for a little while before another procedure.

We are still seeing cardiology weekly right now, hematology is to be seen every 3 months and blood draws monthly. He is supposed to start physical therapy and see them weekly while still going to routine pedatrician visits. Life is full of doctors and Andrew is beginning to show how much he dislikes them. :( He cries and screams every tie we're in any doctor's office now. Poor guy. Other than that he's doing pretty good at home. We're still working at meeting all his goals, but he's definitely getting stronger! Thank you all so much for your prayers!